Table of Contents / sitemap
HOME PAGE
http://scandalousdave.googlepages.com/home
About this file
Overview
Table of Contents / sitemap
ALS (“Lou Gehrig’s Disease”) Introduction
F.D.A. Notice
PART I CASE HISTORY
http://scandalousdave.googlepages.com/alspart1
[Note: I intend eventually to put internal hyperlinks in this page.]
Introduction
Pre-Nov 04 ff (“ff” means “and what follows”)
Nov 04 ff
6 May 05 ff
1 Aug 05 ff
7 Oct 05 ff
Early Jan 06 ff
29 March 06 ff
14 April 06 ff
[late June 06] What’s Next?
PART II ALS & ALS THERAPY
http://scandalousdave.googlepages.com/alspart2
[Note: I intend eventually to put internal hyperlinks in this page.]
My understanding of ALS
My perspective on ALS chemotherapy
My perspective on physical therapy
PART III MY CHEMOTHERAPEUTIC REGIME
http://scandalousdave.googlepages.com/alspart3
[Note: I intend eventually to break this up with hyperlinks.]
My chemotherapeutic regime and its rationales (long page!)
PART IV BROADER HEALING ISSUES
http://scandalousdave.googlepages.com/alspart4
[Note: I intend eventually to put internal hyperlinks in this page.]
My perspective on broader healing issues as they relate to ALS
Prayer (long essay!)
Herbal and nutritional therapy: patients vs. doctors
Understanding nonprofit foundations
Bringing it over the bridge (importing medicines esp. in
Don’t own the disease
How to buy nutritional supplements & herbs etc.
Resources
Diagnosis
Printing instructions for MS Word .doc electronic format (Ignore this if viewing on the Web.)
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CASE HISTORY
Introduction
This case history is written from my (the patient’s) point of view. The variety of ALS I have is sporadic limb-onset primary lateral sclerosis, with lower motor neuron involvement as well. My case is fairly typical of that variant of ALS. Although at this time [June 06] I appear headed toward complete remission of neurological signs and symptoms, I do not claim to have “cured” ALS in the sense of having made it go away forever. It’s probable that I have managed only to put it into a depth of remission sufficient for healing processes to overtake it, and that if I were to abandon therapy the signs and symptoms would re-emerge. It is also possible that the signs and symptoms will re-emerge despite this therapy.
I’ve been “my own doctor” since the early 1990’s (quite successfully) and can read and understand medical stuff a lot better than the average person. On the basis of detailed descriptions available on the Web of ALS and of alternative diagnoses, I self-diagnosed ALS in late June-early July ’05. This diagnosis was substantiated by information I found in a neurology textbook shortly thereafter. It has also been substantiated indirectly by my neurologists.
It’s possible to argue that I never had ALS, inasmuch as the international El Escritorial Protocol for diagnosing ALS requires (in effect) that the patient already be half dead. By this standard, whatever you were suffering from before you were half dead wasn’t ALS, and it wasn’t anything else either (!). Doctors don’t like to render a diagnosis of ALS because that’s like saying, “Kiss yurass goodbye, there’s nothing I can do for you.” I have discussed this with my neurologists, who (as I understand it) agree with my explanation of why they’re reluctant to say that I have ALS. One is willing to describe it as possible early ALS without any alternative diagnosis being suggested. The other preferred (as I understood him) to define ALS as the presence of both upper and lower body involvement, and that the presence of upper motor neuron disease together with atrophy of leg muscles could theoretically fulfill the requirements for ALS. He wasn’t ready to use that set of clinical observations to press the “ALS” button yet, but said I do have primary lateral sclerosis, a diagnosis which (as I understand it) does not exist independently of the ALS syndrome. ……….NOTE: I hold both my neurologists in high regard, as doctors trying to do conventional mainstream medicine as best they can. Few doctors seek the knowledge or have the gumption to step out of that mainstream, because the socioeconomic world in which they live inflicts harsh punishment on those who don’t knuckle under. Since I admit that doctors in general do live in that world, I am grateful for the limited amount of good they manage to accomplish from inside that tragically confining world. …… In this sense they are like priests and preachers who lack the strength to break free of the dogmas and canon laws which Churchianity has imposed on them, and yet these priests and preachers are still of good character striving to do what they can within the boundaries they have accepted as beyond their personal capacity to conquer at the present time. (Yep, many priests and preachers do understand what I’m talking about, and you should beware the ones who don’t.) THEREFORE: although I am very critical of the system in which medical doctors find themselves stuck, I am in general favorably disposed towards the doctors themselves.
A few folks may argue that I never had ALS, because after all, “ALS is untreatable and 100% fatal”. This argument holds water only if ALS will never be a treatable disease, and I hope nobody is foolish enough to make such an assertion. I’m reporting successful treatment. What I am reporting may prove in the long run to be hogwash, but not because ALS is inherently untreatable.
UPDATE! Please see the journal entry for 14 April 06 for an updated discussion of the issue of my diagnosis.
I am a 59 year old Caucasian male in generally good health. In comprehensive screening the only abnormalities usually found are high blood uric acid and sometimes high cholesterol. Dealing with the medical & insurance bureaucracy raises my blood pressure 20-30 points. The same thing probably happens to you.
* * * * *
In this narrative I am frank about some things which have displeased me in my interaction with the “medical establishment”. If you are a patient, some of this will probably sound all too familiar. If you are a doctor, it’s intended to give you a glimpse at how things go wrong in dealing with patients.
As an ALS patient, you need to keep in mind that your neurologist sees too few cases of ALS to warrant his or her becoming an expert in this disease (unless he or she happens to be a specialist). Your neurologist sees a constant stream of patients suffering from stroke, Alzheimer’s, Parkinson’s, head & spine injury, and diabetic neuropathy. Those are the things your doctor has to be good at diagnosing and treating. Furthermore if your doctor were to actually participate in healing an ALS patient, he or she would risk being treated as a Judas by the medical establishment for which a sick patient is more profitable than a healed patient. (Christian history teaches us that only 1 in 12 people understand servitude well enough to sacrifice their own reputation and risk getting their belly slit open by zealots, when the responsibility to deliver the patient to
It is up to you as the patient to become the expert on ALS. Ten years ago that would have been almost impossible. Now, with the Web and online booksellers and information merchants, the problem is not a shortage of information, it’s having to do the work of sifting through it to figure out what part is relevant to your personal situation.
Even if your doctor is unable to discuss healing, he or she is probably competent to participate in monitoring progress through clinical evaluation, and to provide advice and referrals on issues such as living with disability. It is also possible that you will not get better and that your doctor’s knowledge of the path to the grave will prove to be a valuable resource.
In dealing with the “medical establishment”, in most cases the relationship is not between the doctor and the patient, it’s between the group practice and the insurance company. As the patient, you are just a pawn on the chessboard to be maneuvered from one billing opportunity to the next, and the doctor’s job is to do that maneuvering while trying to guess the insurance company’s most likely countermoves.
Many doctors wish they could practice the healing arts with a reasonable degree of autonomy, and genuinely want to do right by the patient. They resent being forced into the role of gaming the insurance company on behalf of the group practice’s investors. If your doctor feels as oppressed by “the system” as you do, that dissatisfaction is a resource you can tap into to mutually plot better medical care.
* * * * * * *
Pre-November 2004
THE POISONING INCIDENT MANY YEARS AGO
When I was about 23, I was poisoned by something that put both kidneys in much aching pain for many hours, was diuretic, and I pissed pink. Didn’t notice any other symptoms. Hadn’t knowingly ingested anything unusual. No mechanical trauma was involved. It came and went too fast to have been an infection. It wasn’t urinary tract stones: I’ve read descriptions of those and this wasn’t that. So-- I was poisoned by something. I have no idea by what, inasmuch as I’ve never come across a description of a poison which has that set of symptoms.
I mention this incident because of the possibility that whatever I was poisoned by, may have set the stage for development of ALS much later.
TWANGED MY BACK
In 1982 I twisted my back with an awkward movement, was flat in bed for a week and had very limited mobility for another couple weeks. X-rays on the day of the injury didn’t show anything serious. For about two years afterwards whenever I felt a twinge, I’d grab a pick and spend some time digging adobe clay out of the yard (which I was slowly converting to good soil). The pickwork always restored muscle tone enough to solve the problem.
The primary symptom was sciatica of the right leg. Since about 1985 or so I have not experienced any sciatica or back pain which I believe to be related to that injury.
JOHN McKISSICK
John McKissick was a distant acquaintance through church, and father of my daughter’s best friend. When he was diagnosed with ALS about 12 years ago, I knew most of his friends would abandon him, so I knew I was needed, and stuck by him. He faded out fairly fast, I think it was less than a year.
I designed for him and his family and myself the “McKissick Communicator”, a modified “eyeblink alphabet board” based on communications engineering principles to enable communication go much more quickly. Unfortunately it does have a learning curve, and he and his family didn’t have time to learn it to the point where they preferred it to a regular alphabet board.
When it got to the point where communication of any type was too fatiguing for him, during my visits he just asked me to read to him the Psalms. I think that was a greater gift from him to me, than it was to him.
I still have a Xerox copy of the McKissick Communicator together with a magazine article which explains the communications engineering principles on which it is based.
THE “HOT SPOT”
For several years now, I’ve occasionally had a sensation of surface hot confined to a very definite region on my right leg, a region which I now realize is over the top of the quadriceps. The sensation of hot was like chile or liniment (not vascular warmth), not painful (at most a minor annoyance), and would go away in a couple minutes. When the sensation of hot was not present, there was usually a sensation of slight numbness. The sensations were not strong enough to entirely block pinprick, pressure, or scratching sensations.
The sensation of hot seemed to come at random, not provoked by anything in particular. During the last year (2005) I’ve rarely had the hot sensation but the region of slight numbness remains.
I suspect that this sensation is somehow related to my neuromuscular disorder because the region of the abnormal sensation is directly over the muscle which became so atrophied, the quadriceps. This could point to a diagnosis other than that of ALS; or, it could point to a mechanism of the development of ALS which has previously been ignored.
UPDATE: January ’06: I have several times felt the “hot” after mountain hiking or other vigorous exercise. I particularly notice it above the distal quadriceps rectus when bending the leg (stretching the muscle) after exercise. This would seem to confirm the connection between the hot sensation and the underlying muscle.
November 2004
I participated in the fall cleanup & yardwork detail at my church, which included shoveling gravel and screening dirt. I expected to be sore for several days since being a pencil-pusher, I’m unaccustomed to heavy exercise. Three days later my left knee swelled up. It got better in a couple weeks, but meanwhile the right knee swelled up. The level of incapacitation was such that I required a cane or crutches. I didn’t plan to see a doctor about it because I know knees can take a while to heal, and better for the knee to heal on its own than having a doctor screw around with it at great expense and inconvenience.
Early 2005
In early 2005 the right knee still wasn’t getting better, so I figured I better get ready to deal with the medical bureaucracy. It had been about 4 years since I had a comprehensive checkup, so I got big bunches of screening tests done by Quest Diagnostics and by Cathedral Health Services.
I also saw a general practitioner whom I will refer to as “Dr. GPX” in order to do a checkup exam, to help interpret the diagnostic data I’d obtained, and to order any additional tests Dr. GPX felt appropriate. Because I feel that everyone ought to have a GP where doctor-patient confidentiality really exists, instead of being the sham it is once bureaucracies or insurance is involved, I told Dr. GPX that I would never bring to him insurance related matters. I also made it explicit that the knee issue was probably about to become such a matter and therefore I wasn’t seeing him about the knee.
No abnormalities were revealed by all this testing other than high blood uric acid (expected), and elevated cholesterol and homocysteine (not expected but not surprising). Tests for “AIDS” and Hep C were negative. The cardiovascular testing done by Cathedral turned out good. These results (other than those which would identify Dr. GPX) are available for research purposes.
I have screening test data going back about 10 years to which the most recent tests can be compared.
During early spring of ‘05 I noticed that the character of the knee problem was changing. Early on, staying off that knee was helpful and putting it to work made it worse. Now, I had discovered that I could be on my feet for a long time (with crutches of course) and although I might be in a great deal of stress discomfort (sometimes approaching agony), afterwards I wasn’t any the worse for wear. Also I noticed that my right thigh was losing mass, which I attributed to lack of exercise since I was using crutches.
6 May 05
I saw an orthopedist, “Dr. OP1”, who did an examination including X-rays. At this time there was little swelling of the knee. The X-rays revealed nothing suspicious except slight osteoporosis of the knee presumed to be the result of having been on crutches for several months. He suspected a neurological condition, and quickly determined that my right quadriceps was severely atrophied and totally paralyzed. When he asked me to raise my leg (kick motion) I quite literally didn’t know how-- he may as well have asked me to wiggle my ears. All I could tell him was, “It doesn’t happen”. Up to this point I had been unaware of paralysis. I thought my immobility was the result of a reflex originating in a damaged knee joint trying to protect the knee joint.
Dr. OP1 said that a quadriceps atrophied as severely as mine usually won’t “come back”-- too much permanent damage has already been done.
Dr. OP1 prescribed an MRI of the upper thigh and lumbar region, an abdominal ultrasound scan, and also referred me to “Dr. N1” for neurological electrodiagnostics.
Dr. OP1 He also offered a knee brace, which I refused after trying it out, because the pressure from it provoked spasticity and because being able to flex my knee was essential to relieve discomfort. Furthermore there was no rationale for using the knee brace which might have warranted its use despite the problems.
I don’t recall whether or not Dr. OP1 mentioned ALS as a possible diagnosis of the neuromuscular problem. I was however aware that with a diagnosis of a neuromuscular problem where ALS hasn’t been ruled out, ALS is a possibility, because about 12 years ago a friend of mine died from ALS.
The MRI’s and abdominal ultrasound scan were done on May 16th.
Mid-May 05
Several days after being in a deep funk over being given a diagnosis which I knew from prior experience could be untreatable and fatal, and seeing that there was neither a sense of urgency nor interest in therapy on the part of the “healthcare system”, I realized that I was on my own, and would have to be my own doctor. I put together what I intuited about neurophysiology, figured out how to operate the quadriceps again (what was left of it), and the following day walked about a mile partly with crutches and partly without.
I began regular evening walking exercise, on most days several hundred feet, some of the time without using the crutches for support. And, almost always after several beers to get the legs loosened up first.
NOTE: On the surface, the foregoing may sound pretty bad on Dr. OP1. However, he was recommended to me by a patient, and did fairly well from a technical point of view considering that he is an orthopedist, not a neurologist. It just happened to be his fate that he had to be the one to give me a refresher course on the subject of in whose interests the medical establishment is supposed to work. With a patient like me, it wasn’t a role in which he could possibly have come out smelling like a rose.
1 June 05
Dr. N1 did electrodiagnostic testing. He told me he’d found significant abnormalities in the right leg and some abnormality in the left, and that the abnormalities did not clearly point to any specific diagnosis. He gave me a copy of the nerve conduction printout, which I somehow lost several months later. Dr. N2 has a photocopy. My own subsequent interpretation of the printout was some loss of myelin and some development of giant motor units in the right leg: however I would much rather trust an experienced neurologist’s interpretation if available, than my own.
When Dr. N1 asked me about symptoms, I told him the difficulty in mobility was not the result of pain, but of struggle, i.e. effort. He didn’t believe me, and hyperextended my leg until I was willing to admit that it was getting painful.
This was the second time in a row that a doctor thought he knew my symptoms better than I did, even though I live in this body and can articulate better than most patients what goes on with it. I wasn’t a happy camper in this establishment. I suspected that Dr. N1 was actually just a lab tech who had been given a courtesy title of “Doctor” in order to keep patients flowing smoothly through the billing system. Afterwards I figured out that Dr. N1 was indeed an M.D.
Although I didn’t know it at the time, the symptoms I had described in both cases, were consistent with the most obvious diagnosis-- early ALS. That an orthopedist might not recognize hyperreflexia is not surprising, but there’s something a little worrisome about a neurologist who can’t recognize a plain-as-day description of paralysis which he already had in his hand instrumented measurements of.
Dr. N1 referred me to another neurologist for further evaluation, but the appointment was for July 7, and with a possible diagnosis of ALS, I had no intention of waiting that long to see a doctor. So I found another neurologist who could see me sooner, and cancelled the appointment with the neurologist to whom Dr. N1 originally referred me.
In particular I wanted to see a neurologist as soon as possible, because it was my view at that time that my primary physician on the case was an orthopedist and that neurologists were consultants whose reports were needed by the orthopedist.
UPDATE: On 4 Jan 06 I obtained a copy of Dr. N1’s written report. It is well written and detailed, and I suppose accurate. It makes no reference to the “make it hurt” incident.
13 June 05
On this date I saw a neurologist, “Dr. N2”. He did a routine neurological exam and as I recall offered a possible diagnosis of ALS without a suggestion of an alternative diagnosis.
15 June 05
Because Dr. OP1 and I had mutually agreed to be dissatisfied with each other, my next orthopedist visit was with “Dr. OP2.” He explained to me that the problems I still felt in my knee were the result of the imbalances created by the neuromuscular problem, and did not originate in the knee joint itself. Regarding the neuromuscular problem, he mentioned ALS as a possibility and didn’t suggest an alternative diagnosis.
Dr. OP2 prescribed physical therapy at the clinic of “PT1”, where I went later the same day and began a routine of weekly physical therapy.
Dr. OP2 also said that the best primary doctor for my case would be a neurologist, not an orthopedist, and recommended that I continue with Dr. N2 rather than himself as my primary doctor.
As I recall, perhaps erroneously, Dr. OP2 requested copies of the various reports, and reported back to me a couple weeks later that there were no abnormalities found in the MRI or the ultrasound. I don’t recall him commenting on the electrodiagnostics, which he may not have commented on since he knew I was planning on seeing a neurologist.
29 June 05
Followup visit with Dr. N2. I brought to this visit a page of comments primarily about symptoms, and a page of questions. We didn’t really get around to discussing the questions very much. A copy of this file is available for research purposes, and is presumably included in my records at Dr. N2’s office.
The physical therapy was really helping. The prominent symptoms were limited to the right thigh, where the quadriceps was gaining strength and the occurrence of fasciculations and spasms was reduced.
By this time I had done enough Web research to know that my condition was almost certainly ALS, and was proceeding on that assumption.
July 05
There was a period, I believe in early July, that I was having a lot of difficulty doing alternate steps on the stair setup at the physical therapy clinic. The setup is 3 short-rise up and 2 regular rise down, with handrails. There was one visit that I figured it was the last time on the stairs, but gradually over several weeks the ability to do the stairs returned.
During this time the fasciculations and spasticity were spreading to my right calf muscle and to the muscles which control the tendons that go right behind the lateral ankle.
At my upstairs apartment I always did the stairs single-stepping except on evenings where I was beer-fortified and doing better than usual, where I would go up alternate-legged. Going down alternate-legged was a much rarer feat, and never very pretty.
The stairs at home were often a real struggle even with the handrails, and I feared the day was coming soon that I would be unable to negotiate them. I began looking for a downstairs apartment and finally moved into one in early November.
July was a real “headed downhill fast” period. I figured I’d be in a wheelchair before the end of the year. My life was basically about trying to figure out how to bail out gracefully, what some people call “end-of-life issues”. Living in this mode had its low points, but I really enjoyed being in “give-way” mode, especially at work where I devoted myself to mentoring.
If I had simply “gone along with the program”, accepting passively what “the system” offered, I have no doubt that my prediction of a wheelchair for Christmas would have been fulfilled. However, as you know by now, I am disobedient, do not “go along with the program”, insist on finding out how many rules need to be broken to get goodness done, and then I break them damn rules.
1 August 05
During the prior weeks I had researched naturopathic therapies for ALS and set about obtaining the necessary materials. I initiated these therapies on August 1. They comprised the following, in summary:
1. Minimizing dietary free glutamate and eliminating aspartame entirely.
2. Antioxidant therapy, with emphasis on maintaining glutathione.
3. B-vitamins, including megadosing B-12.
4. CoQ-10 for mitochondrial support.
5. Magnesium citrate to minimize the possibility of muscle cramps.
6. Lecithin for nerve repair support.
7. Natural COX-2 inhibitors occasionally augmented with ibuprofen to preserve good joint function.
8. Vitamin D and minerals to help rebuild weakened bone.
9. Plenty of beer in the evening followed by whatever walking that the resulting subsidence of spasticity and fatigue being beer-buzzed made possible. (This was immensely helpful with the physical therapy I was doing at home.)
It was about this time that I also began taking NAC, Acetyl-L-Carnitine, and Alpha Lipoic Acid.
Since August 05 I have made some changes to the chemotherapeutic regime, but the basic core of it hasn’t changed much (as of June 06).
10 August 05
Another visit with Dr. N2, to which I brought several pages of descriptions of symptoms, self-prescribed therapy, physical therapist’s report, and other comments and questions. We didn’t get to the questions very much. The file is available for research purposes and I presume is included in Dr. N2’s file.
The self-prescribed chemotherapy is summarized above in the entry for 1 August. A summary of symptoms is as follows.
1. Tightness of abdominal muscles, somewhat reminiscent of some of the sensations I’ve had in the right upper leg.
2. Frequent weakness/clumsiness of right hand and arm.
3. Pattern of weakness, fasciculations, and hyperreflexia previously seen in right thigh, spreading to lower right leg.
4. Frequent weakness in left leg, but with few fasciculations and no noticeable hyperreflexia. (Note: doctor’s notes may reflect positive Babinski sign, I don’t know.)
5. Continued improvement in right quadriceps.
6. Despite the apparent spreading of the symptoms, my overall mobility was improving since I started self-prescribed therapy, but too soon to attribute any significance to that. There’s huge day-to-day and week-to-week variability in the symptoms.
Because I was concerned about the spread of symptoms, especially possibly involving abdominal muscles, I figured it was about time for another round of electrodiagnostic testing. Dr. N2 does not have his own electrodiagnostic lab. For this reason, and because my employer wanted a second opinion, I went shopping for a neurologist with access to electrodiagnostic equipment who was willing to see me. That doctor turned out to be Dr. N3, to whom Dr. N2 subsequently gave me a written referral.
In late August I made the mistake of carrying a couple of boxes of books down to the car. A couple days later both legs were so weak that I couldn’t say the left one was any better than the right, and ambulation even with crutches was a very slow and agonizing struggle. I describe this event as a “neurological collapse”. I figured I was doomed, but over the next 2-3 weeks I recovered to my customary level of mobility.
Early September
By now I had learned enough of how physical therapy works from my physical therapy provider, that I stopped further professional physical therapy and proceeded on my own.
My physical therapist’s parting words were, “Get plenty of rest”, something he hadn’t said before. I don’t know what prompted those words at that moment, but I decided to heed them. I had previously been averaging 7-9 hours of sleep, but now decided to go to bed early whenever I felt the need, and to wake up when my body was ready, not when the clock said to. (Fortunately I have an understanding boss.) Now I probably average 10-11 hours’ sleep and occasionally go 12-14 hours. There’s a widespread belief that most healing takes place during sleep. I’m not sure what that widespread belief is based on. However it is in agreement with an algorithm-based model of natural and/or artificial intelligence which I elucidated about 6 years ago, which illustrated the role of sleep in learning and creative thinking.
Unfortunately sleeping 10-14 hours doesn’t leave much free time during the day.
Jan-Feb 06 UPDATE: The fatigue has diminished to the point where I usually manage fine with 8-10 hours’ sleep, though I occasionally need more.
7 October 05
On this date I saw Dr. N3. He did a routine neurological exam and then proceeded with detailed electrodiagnostics on the right leg. He told me that the electrodiagnostics showed no neurological abnormality in the leg itself. This suggests that Dr. N1’s electrodiagnostic results of 1 June were erroneous, or that the lower motor neurons had been damaged but had since healed. My poorly informed interpretation of the data suggests redistribution of giant motor units to normal function, which is not something I’ve seen described in the literature. I look forward to professional critique and interpretation of these two sets of electrodiagnostic data.
UPDATE: 4-14-06 Dr. N3 did detailed electrodiagnostics (EMG etc.) on the upper and lower right leg and found no evidence of lower motor neuron disease, just upper motor neuron disease. See additional comments in the journal entry for 14 April 06.
Dr. N3 told me that with the atrophy of the right leg and the evidence (primarily hyperreflexivity) of upper motor neuron disease, I could plausibly be diagnosed with ALS, and in any case was diagnosable as having primary lateral sclerosis.
Late October 05
About this time I decided to begin weekly massage therapy. The massage therapist “MT1” who was recommended to me by a friend is a medical professional who has training and experience with neuromuscular massage, including with ALS patients. During the first session we got acquainted and tried massaging the offending leg to see what would happen. I didn’t perceive any benefit, so in subsequent sessions we shifted mainly to relaxation type massages, with the idea that when circumstances began to point to something more specific to ALS, we’d try it.
Early November
Finally moved into my new downstairs apartment, brand new unit just a block away, arguably the nicest one within a mile of here. No more stairs!
And, Dr. N2 wrote me a prescription for a handicapped parking tag. This should have happened months earlier. Here’s how the system he’s stuck in works: a handicapped parking tag is real cheap and nearly 100% effective, whereas Riluzole is horribly expensive and nearly worthless. The logic of this situation as seen by the patient is very different from that which prevails in “the healthcare delivery system”.
Late November 05
We had a visitor at church whom I hadn’t seen before and haven’t seen since, who by sheer coincidence I discovered was a neurologist who’s done leading edge research on ALS, esp. the use of neurotrophic factors. I’ll call her “Dr. N4”. I was so excited to be able to have a two-way conversation with someone about the kinds of therapies I was engaged in, that… get this… I forgot to ask her name!
UPDATE: In January 06 I figured out a way to possibly find out who she was. I succeeded on that score, but because she’s moved my efforts to contact her have so far failed.
UPDATE #2: In mid-February 06 I found out she’s in El Paso once a month, and found a probable way to get a copy of this passed on to her through a patient of hers who someone I know also knows. UPDATE mid-April 06: I have not received any information that she actually received the report.
9 December 05
Danced my ass off briefly at the company Christmas party, with crutches, but at moments without. The following day I walked over a mile without even taking crutches with me, during the day, no beer necessary. On the 11th, I could barely stand even hanging on to something. Thought I might be doomed, but I recovered in several days. Heckuvalot better than that book-carrying incident in August where recovery took several weeks.
In late November- early December I decided to stop using crutches except when really necessary, and to learn to walk normally without first having to get liquored up. I made progress rapidly.
Also sometime early to mid December I upped my mag citrate to 400 mg/day, in response to a clearer understanding of magnesium’s role in blocking calcium ion excitotoxicity. At the same time I began taking tulsi (holy basil), an Ayurvedic herb regarded as a strengthening adaptogen and neuroprotectant. Also Dong Quai, an herb used in traditional Chinese medicine for many purposes including treatment of “flaccidity diseases”.
I attribute the remarkable progress in December in part to this modification to my chemotherapeutic regime: however there’s no way to know for sure if that’s what made the difference. It may well have been all that stuff I was doing for several months finally kicking in.
Mid-December 05
I decided to declare my massage therapist a neurologist, physical therapist, massage therapist, and research scientist, all rolled into one, on the cheap. Works for her: she’s glad to be thought of as a real medical professional, not just someone who does back rubs.
So weekly, she checks each muscle individually, and we work out physical therapies I can do at home to work on the deficiencies. We also do experiments with hyperreflexia.
We paid special attention to gaining control over the right foot in all dimensions, and gaining control over the knee when not locked. On Dec. 30 I hiked about 1 ½ miles mostly through sand dunes and up and back down a steep hill, using the crutch very occasionally as a walking stick, without falling once. Those things can’t be done without foot control in all dimensions, and control over an unlocked knee. My overall stamina and aerobic capacity did not seem impaired. ……On 2 Jan 06, I went hiking in the Franklin Mountains, totaling probably about a mile, mostly fairly good trail but I did some [very slow] rock scrambling too.
19 December 05
Second visit with Dr. N3. Was first seen by an intern, Dr. I1., who basically started out from scratch with me, taking a history and doing a routine neurological exam. We had very pleasant conversation: he seemed to be someone I’d like to get to know as a friend.
Dr. N3 did a routine neurological exam and observed that my walking ability seemed to have improved since the last visit (which was true). He was under the mistaken impression that the MRI’s done in May included cervical and head, and when he found out this was not the case, he wrote an Rx for the necessary MRI’s. He wanted to rule out the possibility of a tumor etc. which could possibly cause symptoms mimicking those of ALS.
27 Dec 05
Had cervical and head MRI done. They used gadolinium chelate as a contrast agent. Hope the diagnosis doesn’t turn out to be gadolinium poisoning.
Early Jan ‘06
I still have occasional weakness, fasciculations, and spasticity in my right hand and lower arm. It’s worse if I’ve been doing a lot of guitar playing and/or computer mousework. (Keyboard doesn’t seem to be a problem.) Can’t rule out the possibility of a localized repetitive stress disorder, which might be the entire right arm/hand picture or superimposed on ALS. Hyperreflexia is arguably present but not prominent.
I also frequently have tightness of the muscle layer of the abdomen (usually bilateral) and fasciculations (mostly on right side).
I’ve recently experienced an odd fasciculation on a certain abdominal wall muscle: it’s amplitude modulated with an envelope of about 0.3 Hz, and a carrier of (I would guess) about 10 Hz (almost a buzz), lasting several minutes. Although the modulation envelope is a rate close to the breathing rate, it is not synchronized with breathing and holding my breath doesn’t affect it. (UPDATE: This occurred several times at night over a 3 day period, with no subsequent episodes.)
In early January I started to practice jogging/running about 30 feet at a time. Last summer even on days where I could walk pretty good after imbibing the evening beer ration, my attempts to jog or run always failed, the legs just wouldn’t do it, not even a little bit.
On Dec. 31, I slogged through Red Sands and climbed Juniper Hill. On 2 January I went hiking for an hour or two in the
12 Jan 06
On Saturday 7 Jan I hiked Juniper Hill from the other side. Sunday I hiked Cottonwood Springs the long way around, about 2 miles and about 1,000’ elevation rise of moderate to difficult mountain trail. Experienced some muscle soreness and a bit of increased spasticity and fasculations for several days afterwards, but no neurological collapse such as occurred late August and early December. Haven’t had to use cane or crutches (although I used a walking stick for the hike itself). A 1,000 foot rise hike was my limit, though, for a more or less nonstop hike. Could probably have done it again with a couple hours’ intervening rest and refreshment. The lack of any significant neurological collapse I consider more important, than the mere physical ability to do the hike.
On Wednesday my massage therapist and I decided that neither of us place much confidence in the Babinski sign as a diagnostic tool. My daughter as a baby exhibited a toe-curl reflex, which I presumed was entirely normal (“ontogeny recapitulates phylogeny”, as biologists are wont to say), and my massage therapist says many patients who have no diagnosis of neuropathy give a positive Babinski sign.
January 18
Appointment with Dr. N3. A young fellow who was evidently a student or intern, was also present. MRI’s were normal. Dr. N3 was pleased with my progress and said he would read my (12 Jan edition) report. He also scheduled me for an additional round of electrodiagnostic testing on April 19th, limited to probing those items which were discrepant between his own findings in October and those of Dr. N1 in June.
At this time I do not use crutches or cane, only a hiking stick when hiking in the mountains. Symptoms in abdomen (esp. tightness) and right arm (esp. fasciculations/spasm) are reduced to the point where I hardly notice them. Can walk (with some effort) without locking knees, and can stand briefly on right leg with knee unlocked.
Last spring and summer, dorsal reflexes in right were very noticeable when pressure was applied to the bottom of the foot by standing and occasionally from the accelerator when driving. Nowadays I never notice dorsal reflexes when driving and rarely at other times.
Last spring playing the guitar resting on my right leg tended to provoke tightness and spasticity in the right quadriceps. For the last several months resting the guitar on the right leg causes no symptoms in the leg.
25 Jan 06
Last Sunday I did a short but difficult hike in
Am starting to learn how to sprint a few tens of feet at a time, and to control the stop.
Diameter of left thigh seems to have shrunk slightly, and that of right thigh seems to have grown slightly, so the difference is diminishing. My massage therapist reports improved muscle tone in both legs, so at this time the apparent reduction of circumference of the left leg is not a cause for concern.
Right lower leg circumference at calf max, is on the order of 2 cm less than right.
6 Feb 06
Last couple Saturdays I climbed Juniper Hill. It is a hydrologically unique ecosystem which will probably be destroyed by human activity within another ten years or so. I hope that someone at UTEP will research and document it while it’s still there, seriously degraded but still functioning. (In a former life I was an arid-lands hydrologist-climatologist-botanist, and so I recognize how unique this site is. Surely it must be archeologically rich as well.)
On 1 Feb I visited GP1 and told him what has transpired in the last year. You’d expect a GP to respond with, “And are you finished? thank you, next patient please!” but I gots better than your average GP. He was full of questions and eager to read the then-current version of “ALS Therapy”.
7 Feb 06
Last couple days right leg has been both rubbery and stiff. (Sorry if that combination doesn’t make sense to you.) Well, every Tuesday a friend takes me on a “Tuesday with Morrie” turkey trot. I got liquored up and we hoofed it down past
9 Feb 06
My massage therapist ordered me some 20# ankle weights a couple weeks ago. They finally arrived yesterday and I now use them to dance the monster mash. I can’t do a full leg straighten with the 20# yet, can very nearly do 16#, and 12# is easy. UPDATE: I didn’t stick with doing the ankle weights.
Since I discovered a couple days ago that the right leg was good for a half-meter lift, am now single-stepping up on chairs and on the picnic benches at work.
Last fall and early winter I was frequently experiencing symptoms in my right arm/hand. Now and then I experienced episodes of clumsiness keyboarding, playing guitar and piano, and (no joke) wiping my ass. The sensation of heaviness combined with excitement in the arm was common during the night, though infrequent during the day. …….Nowadays the sensation of heaviness in the arm is still very common, but not usually accompanied by the feeling of excitement, and the clumsiness episodes aren’t happening any more. The middle finger spasticity that I used to be able to provoke by straightening my fingers in the ass-wipe maneuver, is gone-- my attempts to provoke it don’t get any results.
15 Feb 06
On the 10th I experienced spasticity of the right thumb enough to impair slightly my ability to use the computer keyboard at work.
On the 14th did a vigorous sidewalk hike of half a mile, and worked out with the ankle weights. Climbed Juniper Hill on 13th and 15th. On 15th was not quite as vigorous and noticed some arrhythmia (I believe extrasystole) about 2/3 the way up. In the past I’ve noticed arrhythmia primarily if I’ve been burning the candle at both ends and making up the difference with extra coffee-- which has not been the case recently.
I deliberately pushed the exercise the last several days to find out if there will be any sign of neurological collapse over the next several days. I regard lack of neurological collapse following an episode of pushing the (then) limits as a strong indicator of success in treating ALS, more important than just the physical ability manifested while pushing those limits. UPDATE: 18 Feb evening, I haven’t had any sign of neurological collapse, just a little muscle stiffness and soreness for a couple days.
21 Feb 06
Almost every day I clamber on the landscaping rock in front of the corner convenience store. This evening that rock felt as familiar to me as …. well…. I’m stammering in print here, can’t find the right metaphor. I could jump, leap, one-footed, two-footed, whatever, anywhere on that rock.
In my personal circumstances I am much inspired by the story of the healing of the paralytic in Matthew 9:1-7, Jesus’ reply to John the Baptist (Luke 7:22, echoing Isaiah 61:1-3), and the words of the responsorial psalm of Isaiah (35) v6: “The lame shall leap like a stag!” I’m sorry that most churches teach such prophecy as ancient superstition, not as something you and I have a personal responsibility to strive to fulfill.
26 Feb 06
Previous Thurs-Fri I had a setback, “100 pound rubber legs” and had to sleep 11-12 hours. Haven’t experienced this in quite a while and unlike the case with some previous setbacks, I couldn’t figure out what caused it. A possible long-shot was having gone several days without NAC, so Friday AM I drove a few miles to get some even though I had a shipment coming in within the next several days anyhow.
Saturday I was doing better and today Sunday I climbed Juniper Hill with no obvious impairment compared to my previous experiences doing so.
This episode was a reminder that I have not “cured” ALS.
2 March 06
Wednesday’s (1 March) massage appt.: therapist can still induce spasticity, but no comparison to what it was several months ago. She can feel the progress in the quadriceps (feels like meat now, not just sinew) and also in the gastrocnemeus (with exercise and subsequent massage, tone of right calf is similar to or better than that of left).
I resumed taking Rhodiola Rosea on Feb 29. It seemed to me that there might be more fasciculations and spasticity than usual, but in any case they were minimal. So I am continuing for now. The immediate benefit a noticeable increase in energy. It remains to be seen whether this is a matter of improving the body’s function at a fundamental level, or if it’s robbing Peter to pay Paul as caffeine beverages do.
Climbing the landscaping rock at the corner store, again this evening as on 21 Feb, the rock was my servant and not my master.
Although I rejoice in the successes, I admit to the weaknesses. My neuromuscular system is not normal. It usually takes me several minutes of walking to loosen up the right leg enough to do somewhat normal things, and the right leg reflexes are still more prone to spasticity and fasciculations. Rebuilding of atrophied muscle tissue is still going on rather slowly, and I suppose that a certain proportion of motor neurons and associated muscle tissue are permanently dead and will not recover.
3 March 06
Today quite a bit of quadriceps stiffness, knee discomfort & poor knee control, occasional fasciculations of whatever muscle pulls the tendons behind the right ankle, occasional slight spasticity of lower leg/foot, and this evening couldn’t walk down stairs alternately-- which I can normally do these days if I pay close attention. This evening getting liquored up helped a little, but extravagances like climbing the rock or sprinting were out of the question.
The Gehenna of anecdotal evidence is lack of statistical persuasion or solid cause-and-effect. So dear reader, please bear with me while I step into history’s most famous garbage dump (Hinnom gulch, just outside
The Rhodiola is important because I can tell its reputation as an energizing adaptogen is warranted, and because there are multiple lines of evidence suggesting its potential value in ALS. Over the last several years I have experimented briefly with various energizing herbs including ones reputed as aphrodisiacs, and found that in general they produced nothing more than nervousness. On someone else the reaction might well be different (I hope) but that’s how it has been for me. Rhodiola I find to be an effective energy-booster and mild aphrodisiac, without side effects other than the muscle symptoms that are peculiar to ALS. ….I’m not taking Rhodiola to get a better hard-on, which (without a love life) I haven’t got much need for anyhow: it’s survival I’m aiming for.
UPDATE 5 March 06 evening: last night I sprained my R.foot and overstressed the R.knee a bit jumping a bit too enthusiastically off the rock at the corner store. Didn’t notice any problem at the time but today I am hobbling a bit. Spasticity primarily related to the knee is making matters worse. May not be the result of Rhodiola but right now I can’t risk it, and anyway the presence of the mild injuries invalidates the Rhodiola test. So I stopped taking the Rhodiola. …..UPDATE 6 March evening: doing much better today, though both legs are a little rubbery. Expect to be back to normal tomorrow though perhaps with slight residual soreness in arch of R. foot.
15 March 06
Due to other commitments and bad weather I went 2 weeks without any mountain hiking. But yesterday I walked to Ysleta and back, about 3 miles, got tired enough to rest a few minutes a couple times, but no biggie. No sequelae other than needing 10 hours’ sleep overnight.
This evening my massage therapist tested for reflex abnormalities bilaterally arms and legs including Babinski sign, and although the right patellar reflex was a little stronger than the left (possibly due to a more precise hit) there were no identifiable neurological abnormalities.
Repeated attempts to elicit the Babinski sign prior to and after massage were negative both feet. Despite the fact that she keeps getting more skilled in doing the Babinski thing (i.e., firm and precise without tickling, like my neurologists do it). …..Please see my log entry of 12 Jan 06 for perspective on this.
I am now practicing kicking because usually I either miss the target or hit it with the bottom of the (right) foot rather than the toe. I frequently do fine by consciously dropping the foot downward, but it should be without thinking. Motor cortex evidently forgot how to do this maneuver, but I expect it’ll all come back in several weeks.
These days, my physical limitations are almost always a matter of right quadriceps and gastrocnemius muscle atrophy and the associated tendon and joint problems, not neurological problems. Nothing produces spasticity any more, either in my right leg or my right arm, and I no longer notice any hyperreflexia. I still experience fasciculations now and then, particularly in the early morning before sunrise, but it’s stuff that I would probably ignore if I didn’t have ALS. The right arm feels a little stiff and heavy a lot of the time, especially at night, but it’s no longer accompanied by the sense it’s about to jump out of its skin, and there is no atrophy or loss of strength.
I frequently do the exercise of standing on the right leg only with the knee bent. Half a year ago balancing a few seconds on a locked knee was as good as it got.
UPDATE 16 March AM: OOPS! this morning I discovered that curling my right toes results in spasticity of the toes while making the attempt, and spasticity extending to muscles higher up upon ceasing the attempt. (Left toes no problem.)
29 March 06
Over the last week or so, increasing stiffness in upper right leg and increasing spasticity in entire leg & foot. Don’t know why. Today’s massage therapy went as follows:
1. Babinski test before anything else: just barely negative left foot, positive right foot. That’s a setback.
2. Toe-curl test: provokes spasticity in right leg, not in left.
3. Massage therapy, paying special attention to the muscles and tendons which control the toes of the right foot. At first, a lot of spontaneous spreading of last two toes of right foot.
4. After massage, Babinski test negative both feet, and toe-curl test also negative.
5. I mentioned the ridiculous Muscular Dystrophy Association statement disparaging massage therapy as quackery for anything other than symptom relief. (To think I just wrote out a check for $50 to those folks!) “Well” sez yo, “ there it is, to heck with mere symptoms, we just saw verifiable clinical signs of improvement.”
6. My therapist (to whom I previously gave a copy of the MDA’s essay on massage therapy) couldn’t let that pass without comment. She told me a story about another patient whom she was treating successfully for migraines which were sequelae to a car accident involving spine injury. The patient’s neurologist evidently knew nothing about massage therapy: it was her orthopedist who suggested it. Now the patient is fighting with her own lawyer to include the miniscule cost of massage therapy in the suit for damages. I understand this whole problem through the following line of reasoning: the problem is that the lawyer is being paid more than the therapist, and this fact is causing a brain malfunction on the part of the lawyer that not even a neurologist can do anything about. You think I’m being a bit too sarcastic here? Dammit, the world really is dysfunctional, I’ve spent a lifetime studying its dysfunctionality, I admit to how and why it gets screwed up, and I have no intention of pandering to the egos of the arrogant subset of the upper class by declaring they’ve created a utopia for us, or even for themselves. What’s worse, I don’t settle for being a mere critic and complainer, I say how to fix it. Same nasty habit that got Jesus executed. Y’never know, that check I wrote to the MDA may eventually pay to get me whacked.
13 April 06
Continuing occasional spasticity/fasciculations lower leg and toes, and very occasionally fingers of right hand. Toe-curl right foot provokes spasticity upon release, sometimes generalized almost like an orgasm (without the feelgood). Finger retraction right hand sometimes provokes arm spasticity. On the face of it this would seem to be a setback, but they may be signs of healing. Nowadays I can sprint (not very fast or far) just about any time I want. Five days ago while on vacation, hiking in the hills near
A couple days ago I felt the hot sensation on the right lateral side of my upper right leg above the knee hinge, an area where I’ve never felt it before. It (and occasional fasciculations) were the result of power walking with legs bent a day or two earlier.
14 April 06: doctor’s appointment
My neurologist N3 did EMG etc. testing on my right leg and right arm. Conclusion: no lower motor neuron abnormalities. I believe my reflexes were within normal range including negative Babinski, although he did not say one way or another. He told me that without any clinical evidence of lower motor neuron abnormality, my diagnosis is (as it was in October) primary lateral sclerosis, I presume on the basis of spasticity but he didn’t say.
Dr. N3 attributed my improvement to my “positive attitude”. He didn’t seem to have any interest in my scientifically based therapeutic regime which was the core of why my positive attitude got results.
Since I claim to be treating ALS, I did a little research on the web and in my neurology textbook afterwards about “PLS”. It was like trying to plow a straight furrow through a wrecking yard.
VERSION #1: Most sources say roughly the following: PLS is a rare but distinct syndrome defined by upper motor neuron pathology with lack of lower motor neuron pathology, normally symmetrical, most commonly beginning in the legs and moving upward, and not usually accompanied by fasciculations or muscle atrophy. All references I came across say there is no treatment: not even Riluzole is mentioned. The progression is usually slow, and it’s considered inconvenient rather than fatal since the diaphragm muscle does not atrophy.
VERSION #2: PLS is a common early manifestation of ALS, and becomes diagnosable as ALS when the lower motor neurons begin manifesting pathology. A few patients with PLS never develop lower motor neuron pathology. Those few may represent a disease which is distinct from ALS: however they may not since autopsy findings in PLS often reveal lower motor neuron abnormalities which were not detected while the patient was still alive.
VERSION #3: PLS is not one thing, but a variety of motor neuron conditions which intergrade with ALS and several other motor neuron diseases. In many patients which have been diagnosed with PLS, their signs and symptoms do not follow the pattern described in “version 1” above, but exhibit characteristics of ALS, including lower motor neuron abnormalities if you know what to look for.
<OK, brace yourself, here goes a rant, I’ll tone it down a bit in a future edition>
……So, in terms of official diagnoses, what have I got? A year ago I had clinical signs of both upper and lower motor neuron disease, including muscle atrophy. The onset was fairly rapid, and a sequel to knee injury. Neurologist N1 theoretically could have offered a diagnosis of ALS on that basis, but did not want to offer a diagnosis. Now I “have PLS” because the lower motor neuron disease has been cured.
And since “everyone knows ALS is incurable”, the scientifically based things I have done specifically to cure ALS are irrelevant, not because they didn’t work, but because they did!
I guess the next step into irrelevancy is to cure the upper motor neuron disease as well, and since “everyone knows that doesn’t happen”, that also will be viewed as quackery. Not because it didn’t work, but because it did, and for sound scientific reasons which I have documented right here!
If in the future I manage to restore the atrophied muscle, then whatever I did to achieve that will also be quackery, because there won’t be an atrophied muscle to look at any more. Now you know why NSAIDS are so popular for treating arthritis as compared to natural supplements: the former don’t cure the disease and the latter do. What fun can it be to treat a disease you don’t have?
That’s the kind of delusional thinking that pervades modern medical practice. It’s worse than what you normally find in church.
End of rant.>
Mid-June 06
Several weeks ago my neurologist N3 mailed me a copy of the stuff he’s contributed to my medical file. CLASS ACT! The most interesting thing I found in reviewing it is that I do have clinically verifiable lower motor neuron abnormality after all-- multiphasics in my right leg. Second most interesting thing is negative Babinski. Third most interesting thing is that the diagnosis of PLS was made on the basis of hyperreflexia, but in my last visit I didn’t seem much hyperreflexive to me. I figured the evidence of PLS was spasticity, which wasn’t referred to in the report. So although Dr. N3 and I agree that I have upper motor neuron disease, we disagree on what evidence leads to that conclusion, and we disagree over whether or not I have lower motor neuron disease. Since the purpose of this journal is to report successful ALS therapy, I would be delighted to report that I have neither upper nor lower motor neuron disease, but by golly I ain’t quite got there yet.
About three weeks ago I discovered that upon standing with my knees bent at about a 20 degree angle, the medial distal right quadriceps exhibits seemingly random rippling. Obviously doing that, the motor units are not synchronized and the muscle cannot operate at full strength. I am guessing that this is a clinical sign which corresponds to the multiphasics, but I really don’t know. The explanation of multiphasics in my neurology textbook didn’t make any sense to me.
A couple weeks ago I started taking Ashwaganda and Rhodiola again, because of new information suggesting their neuroprotective value. I don’t like taking one drug to counter the side effects of another, but was figuring that Ashwaganda might inhibit the spasticity which Rhodiola has seemed to trigger in the past.
A week ago I chased a jackrabbit at full tilt through the desert hopping around and over bushes when necessary, several hundred feet. The rabbit actually thought he was going to get caught! My “inner dog” was so thrilled I raised the supposedly bad leg on a fire hydrant.
20 June 06
A week ago I celebrated a summer-solstice
Ever since I moved to
Well, this evening we began the Tuesday Turkey Trot without knowing our destination, and my legs felt ambitious. I asked my friend Fr. X. if he was up to walking to
“The sun emerges from the East of the heavens and follows its course to the West, running joyfully as an athlete in a race.” Psalm 19:7,6. Art imitates life: life imitates art. 3,000 years are no barrier.
UPDATE: The following Thursday and Friday I experienced quite a few fasciculations of the muscles which control the tendons that run behind the right lateral ankle. Also fasciculations in my right lower arm with brief moments of the “wanting to jump out of its skin” sensation of tension. Also a few fasciculations of the right gluteus and of the lower left leg, where I virtually never get fasciculations. …….So, is it lower motor neuron irritation due to damage, or due to healing? I don’t know. Also had a couple of episodes of reflex-induced esophageal(?) spasm, which seemed to be more severe and with less provocation than normal. (I have occasionally experienced this off and on for about 5 years: it is related to hiccups and reflux and I don’t believe it’s a symptom of pseudobulbar ALS.) It would be interesting to know what systemic neurological process takes place 2-3 days after exercise which causes these symptoms. That knowledge could lead to therapies directed toward modifying that process or suppressing the symptoms. ……Also, Friday-Saturday I experienced some floppiness (probably same thing as weakness: I had difficulty stepping up onto the rock at the corner store). I presume this is neurological but it might be a muscle healing thing having nothing to do with neurology. Also it’s possible that if I walked half a mile to loosen up the problem would go away.
What’s next?
My next neurology appointment is July 10.
I’m hoping someday to test for serum glutamate and also for the specific antibodies which attack calcium-managing proteins in motor neurons. These are unusual tests and it may not be possible to find a laboratory to do them. A search of Quest Diagnostics’ website didn’t turn up any knowledge of a test for serum glutamate.
I see a dermatologist about once a year to check for any suspicious sun damage. When I do that, I’ll mention to him that I may be in the category of “ALS patient”, and that ALS patients usually develop a characteristic skin texture which I’d like him to be alert to. I will also ask him if he detects any differences in the skin over the “hot spot” on my right thigh, compared to the left. (I don’t see any difference myself.)
I occasionally do the “see how high you can count on one breath” test to check for involvement of respiratory muscles. I usually hit 60-80, but recently (early December?) hit 90 with my massage therapist as a witness. (Update: hit 100 in early March 06: guess I’m improving my counting skills.) Recent physical activity (esp. climbing Juniper Hill) sufficient to kick the lungs into high gear seems to reveal the Dave I used to know. (Another update 22 March: either my lungs or my counting skills are still improving, I hit 110 in today’s massage therapy session.)
Dr. OP1 said that a muscle as badly atrophied as my quadriceps usually doesn’t recover. Lower leg muscles these days are just as atrophied (L. by comparison with R.), about 2 cm difference in circumference: not sure when most of the atrophy occurred, I believe it was last summer but may have been much earlier. However, only the quadriceps rectus is obviously damaged, the other muscles have less mass than they ought to have (by comparison with left leg) but the “meat” seems of normal quality. UPDATE: my massage therapist noticed early June that the muscles that “ripple” near my knee seem to comprise narrow bundles which tend to slip over each other during deep massage. These muscles however are not shortened like the rectus is. Same muscles left leg are normal ……. ....I’m concerned that although the muscle that remains is improving in tone, there seems to be little rebuilding of muscle mass. My massage therapist and I have decided that restoring the atrophied muscles (esp. the damaged quadriceps) to something like normalcy is on our list of things to figure out how to do. (As of June 06 we’re still clueless. Y’got any promising ideas?)
In my 14 April 06 visit with Dr. N3, he suggested that if I want to pursue the ALS thing further, Dr. Appel at Baylor has a whole ALS program and is doing leading-edge research. I checked it out on the Web, sounds real good except for one thing: I didn’t see anything suggesting that they were doing anything to heal patients. So, it’s possible that Dr. Appel and his crew know bunches of stuff I also need to know, but before I go down that expensive and time-consuming road, I want to ask the following question: “Do Dr. Appel’s patients get better?” I haven’t yet figured out a politically correct way to ask that question.
* * * * * END OF CASE HISTORY JOURNAL * * * * *