YEAR FOUR
of Steven Shackel's ALS/MND Clinical Study

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As I embark on the fourth year of this ongoing study I have to admit that, quite frankly, I didn't think I'd survive this long when I started this study.  Perhaps, in the coming year, I shall continue to record not only the stabilisation of my  neurological symptoms but also an improvement? To have reached this point is little short of miraculous - may the miracle continue.  My thanks to all who have supported and encouraged me.

I shall be assessing creatine in combination with my existing regimen this year thanks to the kind assistance of Michael Niswander.  Thank you, Michael. Also, I believe that high dosage acidophilus and bifidobacteria may possibly assist with digestion exacerbated neurological symptoms and shall therefore be attempting to incorporate these this year as part of the study. There will be an emphasis on following the possible links between auto-immune illnesses such as Chronic Fatigue Syndrome and Fibromyalgia with ALS/MND.

I would particularly like to thank Nature's Sunshine Products of Australia for their continued support and encouragement.  Without their assistance this ongoing study would be impossible. I can personally recommend their products and excellent service. See their website and full product range.

Steve Shackel April 2000



SUMMARY
Year Four

Carefully reviewing my notes for the year is always something of a revelation. I (re)discovered a number of patterns that relate to previous findings and ideas.

In my entire life I cannot recall a year in which everything that could possibly go wrong did go wrong - and then some. I escaped, battered and yelping, from the year 2000 and pray that in the next fifty years I do not experience another year like it. [If you do the sums you will note that I intend to live to be at least 100 - so far so good]. Levity aside, the rolling disasters and complications that plagued the last 12 months repeatedly disrupted my personal study. On a month to month basis it seemed that I was learning very little but in retrospect I can report the following:

I seem to have reached my optimum therapeutic combined antioxidant dose. Whenever I increased my antioxidant levels, by taking astaxanthin and CoQ10 for example, my neurological symptoms worsened. There is little doubt that, for many individuals, CoQ10 and astaxanthin (and various other supplements that did not work for me) can be beneficial. It is perhaps a good time to restate that the results published here relate only to how these supplements worked in my case.

As it is now (finally) becoming accepted that there are several distinct forms of ALS /MND we must also accept that certain therapies, medications and supplements will work for some PALS and not others. Medical practitioners may disagree about the precise distinctions between the various types of ALS/MND but the more progressive and open-minded researchers seem to accept that there are many more potential forms of ALS/MND than their more conservative colleagues will acknowledge. Certain researchers are also compiling data on associated chronic illnesses that may comprise part of the ALS/MND "syndrome" (there are no published papers that I know of at this time but the research is being done).

Thanks to Mack & Frances Baker, I was able to use and assess a number of supplements including: Alpha Lipoic Acid (I'll be recommencing that in the coming year); Sambucol (an antiviral supplement, the efficacy of which remains unclear in my case); Bovine Colostrum, which did not appear to help as I hoped but seemed to cause slight weight gain; and CoQ10 which simply pushed me over my optimum antioxidant threshold.

Creatine monohydrate was tried repeatedly but caused a "heavy" feeling in my legs each time and seemed to provoke mild to moderate cramping. This is not the case for most PALS. Aloe Vera juice similarly did not seem to help in my case, although many PALS claim that it has helped them. A higher daily intake or a longer period of use of aloe vera may have produced better results. Most disappointing was the lack of improvement after using high dose acidophilus and bifidus for three months. This beneficial gut bacteria should have helped my digestive function, identified as a problem throughout this study. Perhaps I need to take it for longer than the three month supply available to me?

Towards the end of the year I started taking Noni/Morinda juice. For various reasons, I was unable to establish an appropriate dose level for this and may have to try taking it again in year five.

Supplements tried with some success included Ginseng. This definitely improved my energy levels but I found that it worked better for me at slightly lower than the recommended daily dose. I shall include Ginseng in my daily regimen from now on. Spirulina was included for several months with no ill effects. As I am using it primarily to supply micronutrients and thoeretically "detoxify", it was hard to judge if it helped in the time I was taking it.  The only way to assess this is to stop taking it for a while and keep detailed notes of any changes in my condition.  This is something I shall attempt in year five.  Similarly, I am taking flax seed oil.  This supplies omega fatty acids and helps liver function among other things.  Although not essential I feel I should be taking this to supplement my, not always perfect, diet.

My annual physical examination revealed that, although no improvement was noted in left lateral quadriceps, there was a slight overall increase in muscle bulk in both thighs and calves. There was no discernible further degeneration in either leg. No obvious muscle loss was noted in either arm but the left arm/shoulder remains weak. No improvement in triceps.  Weakness in facial muscles no worse. The only minor concern was reduced reflex response in the right arm and slight loss of upper arm muscle bulk.

Bottom line: my neurological symptoms are essentially the same as at this time last year. My health, averaged over the year, was somewhat worse with an increase in pain levels and inflammation with resultant decrease in flexibility and range of movement. The cause does not appear to be neurological. These symptoms are frustrating and extremely painful but I am glad to be alive, walking unaided every day, and still showing minimal neurological deterioration as I commence the fifth year of this study.


1st Month April 2000 This month I was finally able to start assessing the effects of creatine.  I now have at least six month's supply of creatine (5 grams daily on an empty stomach) and shall keep you apprised of any benefits or developments. After one month no major change has been noted. My walking and general neurological function remain stable.

The month commenced with influenza as the antipodean autumn/fall cold and flu season began.  There is little question that my immune system is compromised as I now seem to contract nearly every seasonal cough and sniffle [as does my wife who has Chronic Fatigue Immune Dysfunction Syndrome or CFIDS]. Thankfully, this effected us no more or less than other flu sufferers but it did take us twice as long to recover. Coping with the flu required an infuriating amount of "rest" which stopped me working. It's probably because I overwork that I'm susceptible to these infections in the first place so I shouldn't complain.

Unusually for me I had a sugar craving which lead to an unfortunate experience with chocolate.  Whilst reading I unconsciously grazed on a chocolate bar until half was gone.  During the next two days fasciculations increased in intensity, duration and extent.  Arms and legs felt weak and I was drained of energy. Chocolate contains L-arginine, processed sugar, fats and preservatives. One article claims that many auto immune illnesses (particularly fibromyalgia and CFIDS) are worsened when chocolate is consumed. Shame I didn't read the article before succumbing to the chocolate.  Of course, I had already observed a similar reaction to chocolate earlier in my study and should have avoided it but the incident was a timely reminder of the fine line we may all be treading between ill health and wellbeing.

Although not directly related to ALS/MND, I must record that in the final days of this month I was involved in a minor motor vehicle accident and suffered whiplash injury; I had food poisoning;  an acute and painful infection requiring medical attention; a violent negative reaction to a prescribed medication;  an extremely traumatic event one day and  incredibly exciting news the next.  If I have previously experienced a more varied physically, psychologically and emotionally fraught week in my life I am still too "shell shocked" to recall it. I only mention these events to explain that any attempt to evaluate my neurological condition during this period would be meaningless. Scientifically, one can learn a great deal from clusters of so called "negative" events.  As a bonus I've learned that when life throws the book at me it's a good idea to duck...

2nd Month May 2000 This update was posted a few days early as I required minor surgery necessitating a short stay in hospital and time away from the computer.  It will be interesting to observe if  general anaesthetic, it's unavoidable impact on my central nervous system, and the surgical procedure have any effect on my neurological symptoms. I shall certainly know by this time next month.

I was noting towards the end of  last month that fasciculations were becoming more intense and frequent in my right thigh. These became extreme around the tenth day of the month so I stopped all supplement other than my basic regimen. Normally I would wait until symptoms abated and then restart supplements under review to establish if they were causing or exacerbating the problem.  Because of the hospitalization I was unable to achieve this in time for this month's update. At the time of writing, fasciculation are within "normal" levels for me.  It remains to be seen whether reintroduction of other supplements will trigger the fasciculations again.

La Haye Laboratories supplied a quantity of astaZanthinTM, a carotenoid complex also known as astaxanthin for me to try this month.  This antioxidant provides carotenoids not readily available from other sources.  I had been taking 2mg (2 gel caps) daily in order to assess its efficacy in my case and hope to establish an appropriate dose level soon. Along with the creatine I have temporarily discontinued these until after my brief hospitalization.

My general health has almost returned to normal after the various traumas of last month (as previously noted, stress worsens my neurological symptoms) although my fibromyalgia pains are more intense than usual.  This could be due to discontinuing a prescribed anti inflammatory medication that has been helping or due to the temporary prescription of a drug to be used preoperatively.

I have often recorded that my improvements are usually preceded by a worsening of symptoms so I remain positive despite the discomfort. No concrete data obtained this month but at least I'm still holding my own.

3rd Month June 2000 The first few days of this month and the last few days of the previous month were lost in a haze of pethidine and pain. The first week was spent in bed and the second week creeping around the house waiting for the surgical wounds to heal, which they eventually did with no major problems.  My legs felt weak after two weeks either in bed or sitting still recuperating but I'm sure that was merely due to lack of exercise. There continue to be sporadic fasciculations in both thighs.

No neurological problems experienced after the general anaesthetic, which was a great relief. Physically, a reasonably good month, all things considered,  but many factors thoroughly skewed any data that I could have collected.  It would probably be inappropriate to list the litany of disasters that occurred in my life this month but it continued the stressful theme of recent weeks on most conceivable levels and even some I could not have conceived of.  I mention this by way of explanation rather than complaint.

Among other things, this website was granted a second international award of excellence by a European judging panel but I could not acknowledge and claim the award because, as I read about it, my computer hard disk circuitry burnt out and the e-mail announcing the award was lost along with months of research, correspondence, e-mail addresses, etc. . Even backed up data was lost through a freak problem with the floppy disks used.  I'm writing this on a borrowed computer and hoping life will return to something like normal soon.

Neitzsche's, "That which does not kill us makes us strong" remained foremost in my mind this month.  I'm starting to believe that we must have exhausted much of our "bad luck" quotient recently and that good things are in store.  Unfortunately, due to circumstances beyond my control, little relevant data could be gathered this month so I'll take a deep breath and start over next month.

4th Month July 2000 This month began and ended well. Things got off to a good start and I feel that I have achieved a great deal 'behind the scenes"  Much of this will be published here at a later date.

To help combat the accrued stresses of the past months I doubled my daily vitamin B complex with excellent results.  I had two days without fasciculations during a very good first week. Unexplained minor digestive problems led, once again, to increased fasciculations, particularly in the quadriceps (thighs) of both legs. [All attempts to stabilize fluctuations in my digestive pattern by  changing diet, supplements, etc. have failed so far but I am constantly working on this]. Fasciculations were decreased to some extent by taking a magnesium complex on "bad" days. This came as a surprise as I have recorded worsening of fasciculations when taking calcium/magnesium supplements. Calcium/magnesium is a logical supplementary pairing to treat ALS/MND but it has not helped in my case. Taking magnesium alone on a daily basis seems to be excessive to my needs as I have recorded a worsening of fasciculations in the past when taking  magnesium daily. The major difference this time was that I took magnesium as one would take aspirin for a headache - i.e.: only when required, then discontinued when symptoms abated.

The worsening fasciculations in my legs was a concern but, although my legs felt "thick" and "heavy", my walking remains unaffected. I still walk a minimum of 2km daily. As this has remained constant for more than two years, to avoid constant repetition, I shall only mention my walking in future if there is improvement or worsening.

Despite the fasciculations mid-month my legs now feel quite good.  I sense that change is taking place in my body and am taking the positive view and assuming this as a good thing! We shall see.

5th Month August 2000 An unavoidable change of prescription medication halted experimentation for the first two weeks until I adjusted to the new drug.  From then on I continued my ongoing assessment of the effects of astaZanthin. This powerful antioxidant proved to be "too much of a good thing" in my case.  Because I am already taking supplements high in antioxidants I found that the astaZanthin produced symptoms similar to those experienced early in this study when taking high doses of OPC/Grape Seed Extract or NAC.

Data on astaZanthin shows that it is extremely well tolerated and of low toxicity but I found that after three days my fasciculations increased in intensity, duration and extent.  As the astaZanthin alone is unlikely to provoke this reaction I have concluded, after four trials with at least a week to stabilize between each attempt, that my antioxidant levels were simply raised beyond desirable therapeutic levels in my case.  AstaZanthin's free radical scavenging ability is superior to most other antioxidant compounds and therefore may be a good product around which to build an antioxidant regimen, in much the same way that I have used OPC.

Although the cold and flu season is at its height in Australia at this time of year, and I have been in contact with numerous coughing and sneezing individuals, I only experienced a short bout of of mild viral symptoms which my immune system coped with quite well. No major symptoms developed. This is heartening as I seemed to succumb to most seasonal infections at this time last year. Overall, a stable month if medication changes and brief antioxidant overload are factored out.

6th Month September 2000 The first two weeks of this month were the best this year. Minimal symptoms of any kind. I was walking on air with no stress, no pain and the dramas of mid year resolved. During the second week I began nursing my wife, Vicki, through an awful bout of influenza that totally disabled her as it has done to virtually every local I know.  I began exhibiting symptoms such as swollen glands, exhaustion, sore throat, fever, etc. but it progressed no further (although the doom sayers assure me it will!).

As observed repeatedly in this study, when my immune system is "distracted" in fighting infections my neurological symptoms worsen.  As I write this I am just recovering from widespread minor fasciculations and even some cramping in my right thigh.  I have not experienced muscle cramps along with the fasciculations for over a year. These symptoms were not severe and appear to have passed.  They were probably due to the extra (frankly, excessive)  physical activity this month and the stress of caring for my sick wife whilst also fighting off the virus myself.  The good news for this month is that my immune system seems to be much stronger than on previous occasions.

For the first two weeks I was finally able to try Alpha Lipoic Acid (ALA).  There were no negative side effects and I look forward to including it again later but I have elected to not take more ALA until my amalgam fillings are removed as it is believed that ALA can release mercury from amalgam fillings into the body. After the second week I started Co Enzyme Q10 (CoQ10). At this early stage it is difficult to assess the effects of CoQ10 because my immune system is clearly doing battle with the virus that has afflicted everybody around me. I shall know more next month.

I am in the fortunate position of having a number of new supplements to try within the next few months, thanks to the kindness and generosity of Mack and Frances Baker, and shall be reporting on each supplement as this study progresses.

7th Month October 2000 This was another month of extremes.  It started with the dregs of the virus from last month and progressed through to a great deal of spinal, nerve and muscular pain. This upset my routine to some extent as it recurred twice throughout the month.  This can be partly attributed to slipping on wet tiles and pulling neck/shoulder/back muscles in my attempts not to fall. My "pain cycle" is difficult to break once entrenched and requires rest, pain medication and gentle exercise. The slightest deviation from this triggered another pain cycle: and so it went. I was nevertheless able to try Aloe Vera juice for the first time.

I have repeatedly stated that digestive disturbances coincide with worsened neurological symptoms, in my case.  Other PALS have reported similar experiences. Aloe Vera juice has many beneficial qualities (see Aloe Vera.) It contains amino acids and enzymes that promote cell growth and maintain cell wall integrity and can improve the mucosal lining of the intestines and assist digestion. Aloe has been used to successfully treat diverticulitis, colitis and some ulcerative conditions of the gut. As digestion and liver function are interdependent I thought that any assistance that could be given to my alimentary canal would be beneficial. I shall continue with the aloe vera juice, approximately 60ml/3fl oz. daily, for the next few months.

I also started Sambucol, an anti viral Elderberry extract.  Developed by a virologist, this is thought to retard the replication of viruses and their ability to invade healthy cells.  My viral symptoms of last month and early this month certainly disappeared after two weeks but the virus may well have run its course by that stage.  The only way to gauge if Sambucol is helping me is to keep taking the product and monitor the results. That should be no hardship as it tastes wonderful! I have yet to recommence the CoEnzyme Q10 but hope to do so in the coming months.

I continue to take Bovine Colostrum capsules at the minimum dose with no obvious ill effects but no apparent benefits at this early stage. The intention is to strengthen my immune response without producing the symptoms experienced when attempts have been made to directly "boost" my immune system. Although I am unable to find research data in conventional western medical texts, the concept of treating a problem "indirectly" is acknowledged in naturopathic, Chinese and other complementary medical practise (using distal meridian points in acupuncture is one example).

This month ended well.  My mobility remains good and general health and well being are stable. Neurological symptoms, although still apparent, are minimal and well within levels I have come to accept as "normal" for me.

[Footnote: In desperation I have conducted a limited "animal trial" on our cat, dying of old age and an undiagnosed, untreatable illness (symptoms include muscle wasting due to an inability to metabolize food adequately).  I started her on the contents of one capsule of bovine colostrum daily. Within one week the cat's condition had improved substantially and the symptoms of her illness were greatly decreased. This is hardly conclusive evidence of efficacy but is an indication that the product has helped in combating an otherwise "untreatable" feline condition. Having already tried everything available to veterinary medicine, I find this result encouraging as it tends to support research data on the use of Bovine Colostrum in humans.]

8th Month November 2000 I suffered a great deal of spinal nerve pain at the beginning of the month so, with the ensuing disruption of routine, was forced to mark time for the first week. A short spell in hospital for more tests (good results, thankfully) ate into the second week so I can only report on supplement experimentation in the final two weeks of November.

I continued with the Bovine Colostrum at a higher dose rate (4 capsules daily). My wife and others commented on how healthy I was looking - not bad considering the amount of pain medication I had been forced to take and my usual bad reaction to general anaesthetics. Perhaps due to the lingering effects of the anaesthetic I recorded extreme swings in general health and well being even in a single 24 hour period, so I expect any results for this month are tainted to some extent. This said, I have ended the month stable and in good health.

I recommenced the CoEnzyme Q10 (CoQ10) and recorded an increase of fasciculations and a "heaviness" in my legs (similar to 4th Month this year). The fasciculations, widespread but brief and of medium intensity, were more annoying than debilitating so I persevered and found that they abated towards the end of the month. The "heaviness" of my leg muscles also decreased so I shall now continue with the CoQ10 and record any effects.

Behind the scenes I have been doing a great deal of research: going over old papers and ideas that I'd shelved for lack of supporting data. Although I am far from ready to publish my findings here I can honestly say that my overall view of the possible aetiology of ALS/MND is much improved. More pieces of the puzzle seem to be falling into place and I am attempting to contact researchers in apparently unrelated fields to discuss the similarities in their findings and the possible relevance of those similarities to ALS/MND research.

9th Month December 2000The first two weeks of this month started with a great deal of pain, similar to but somewhat worse than last month [see footnote below].  The fasciculations noted last month progressed from mildly irritating to downright  bothersome.  As in every other stage of this study I reverted to my basic regimen and within days the fasciculations virtually  ceased.  I must conclude at this time that the daily dose of CoQ10 was responsible for the increased fasciculations.  Increased fasciculations have occurred several times now when I have taken a new antioxidant compound and are probably an indicator that I may have reached my maximum therapeutic daily antioxidant dose level. After a  break of a few weeks I shall start the CoQ10 again and if the symptoms recur I shall discontinue it permanently.

I found that I had recently been putting on weight in all the wrong places.  As my basic diet and daily routine had not changed during the period  of weight gain I can only assume that either the Bovine Colostrum or the CoQ10 was responsible for the weight gain.  If I start  to lose the weight over the next few weeks (Christmas dinner not withstanding) and gain it again when I recommence the  Colostrum or the CoQ10 it may indicate that one or other of these may be useful to aid weight gain in PALS who need stored  fat. I have had no reports of CoQ10 causing significant weight gain so I think the colostrum, if anything, may be responsible.  This is something I shall monitor in the coming months.

I have a three month supply of a ProBiotic product that may assist digestion by supplying useful amounts of bifidus and other  digestive bacteria.  As poor digestion has been an ongoing problem that seems to worsen my neurological symptoms I am  hoping for some improvement in the coming weeks.  A more detailed report will be included later if this product helps.  I shall  also be taking Morinda citrifolia juice (used traditionally in Polynesia as a virtual "cure all" called Noni that has also been noted to aid  digestion). I had a "feeling" to take Ginseng and two days later received an article on the observed effects of Ginseng on ALS  mice.  I shall include Ginseng in  my daily regimen in the coming months to gauge the benefits, if any.

My walking gait is particularly good at present and would be near normal if muscle strength, lateral balance and stamina were  better. Some days I can walk more than 2 kilometres but not without a good rest in between walks. Perhaps I can improve on this in 2001?

[Footnote: I am in frequent communication with eleven people who suffer chronic pain for various reasons.  I discovered we  had all experienced a significant worsening of our different conditions on the same day this month (3rd December) and that it persisted for approximately the same  amount of time.  This also occurred last month.  We are geographically separated by up to 2000 kilometres but all live near the "east coast" of Australia. This seems a little more than coincidental.

When I was in a neurological ward for a month I asked the same question of several dozen patients (ages ranging from early 20s to 80's): "Am I crazy or do major changes in weather conditions make your symptoms worse, too?"  They all replied that they had noticed the same thing but had not mentioned it because they didn't think anybody would understand.  They also admitted that the worse their general condition was before significant  barometric changes the worse their pain levels became.  Although not strictly related to ALS/MND, I am wondering if a similar  thing happens to (or can even be assessed by) PALS?  Weather conditions in the lower right hand corner of Australia have  been extreme for several months and apparently I am not the only person to note the correlation between extremes in weather  and extremes of neurological symptoms, particularly pain.]

10th Month January 2001 A good start to the new millennium!  No major problems and increased energy levels.  The extra energy is probably due to the Ginseng I am now taking. Other PALS have also commented that they feel they have benefited from ginseng.  I shall record my response to the ginseng for several weeks but already feel that I shall be including it in my daily regimen in future.

The bifidus/acidophilus capsules I have been taking to aid digestion had to be discontinued whilst I took a short course of antibiotics for a throat infection.  My digestion suffered when taking the antibiotics and my neurological symptoms (predictably) worsened correspondingly.  I returned to "normal" within a few days of ceasing the  antibiotics and recommencing the bifidus/acidophilus capsules.

I have also continued with the Morinda or Noni juice mentioned last month.  No appreciable changes noted so far but, as my routine has been disrupted on a number of occasions and doses have been missed, I still cannot comment objectively at this stage.

For several months now I have been experimenting with incremental increases and decreases in Vitamin E, B and C and Zinc doses.  I have not reported on them before now as the changes were gradual and spread over a long period.  I have concluded that the doses of these supplements listed on My Regimen page are quite sufficient in my case.

I have been overworking this month, pushing far too hard and working far too long, but have suffered few of the negative side effects that I have come to expect.  My weight is returning to normal, which may indicate that the Colostrum was indeed causing me to gain weight over the last two months.  I'll take a reasonable break and start the colostrum again to see if it causes me to gain weight, as I suspected.  Although my general pain levels have remained slightly elevated I am extremely pleased with this past month.  I have had two fasciculation free days and several that were almost entirely fasciculation free. I doubled the distance of my daily walk on two occasions and suffered no ill effects. I feel healthy and extremely positive.

11th Month February 2001I must confess up front that I overdid things this month.  Worked too hard, slept and rested too little.  Consequently, fasciculations became more frequent and more widespread.  From virtually no fasciculations last month I started to become a little concerned by mid month. My pain levels have been elevated since early December and remained the same this month.

As frequently recorded over the past few years, I often feel I have an underlying infection that seems to flare up when I get physically or emotionally run down. The best way I can describe it is like influenza without the coughing and sneezing.  Sore throat, aching body, red and watery eyes, night sweats, lethargy and all the other symptoms normally associated with a viral infection.  These symptoms were neither extreme or consistent this month but were frequently recorded in my notes. I've resolved to take things a little easier next month to give my body a chance to "catch up" and cope with whatever it is that ails me!  If sporadic ALS/MND is not caused by a co-infection I will be amazed.  For this reason I am closely observing research into numerous (apparently unrelated) chronic, degenerative illnesses as I am convinced there is a connection between them and ALS/MND.

I started creatine again at the beginning of the month but, within a week, had started recording increased fasciculations, cramping and pain in both legs.  I stopped and noted some improvement but feel that my routine was too disrupted to enable me to draw any conclusions this month. My mental and emotional wellbeing is still extremely good so it is a shame that I cannot report physical symptoms to match.  Maybe next month...?

A general note:  I have noticed that I crave salty or spicy foods when I have "bad" days.  The extra salt seems to help a little.  I am not sure if this is physiological or psychological but I would be interested to hear from anybody who craves salt and usually feels better several hours after eating it.  Other PALS have mentioned this but I would like to gather more data on salt and ASL/MND.

12th Month March 2001 I had my annual neurological and general physical this month and the results are extremely encouraging. There appears to have been no significant neurodegeneration for the past year.

Good news:  Slight increase in muscle bulk in both thighs and calves. No discernible degeneration in either leg and, although no improvement was noted in left lateral quadriceps, surrounding muscle bulk has increased. No obvious muscle loss was noted in either arm but the left arm/shoulder remains weak. No improvement in triceps.  Weakness in facial muscles no worse. The only minor concern was reduced reflex response in the right arm and slight loss of upper arm muscle bulk. Bottom line: my neurological symptoms are essentially the same as at this time last year. My general health is worse than last year with an increase in pain levels and inflammation with resultant decrease in flexibility and range of movement. The cause does not appear to be neurological.

My immune system is, without a doubt, constantly under pressure as I swing from healthy to feverish, sluggish and painful for no obvious reason.  My immune system overcomes each of these incidents but the frustrating part is that, after all this time, the cause has yet to be defined. In addition to the usual comparative blood testing, multiple tests have been ordered to discover what is causing symptoms of what must be a chronic underlying infection.  As all standard tests have shown nothing, specialist testing will be required and I shall report on the outcome in the next month or two. Good news to end what was physically, emotionally, psychologically (and in virtually every other respect) an extremely difficult 12 months.

I halved the recommended daily dose of Ginseng and feel this is working better for me.  I have discontinued creatine as it simply does not seem to agree with me. I have titrated doses of several supplements over the months to discover if they were reacting with the creatine but apparently they were not. I intended to include a footnote on titrating doses (a fancy way of saying "messing with dosages until you find a dose/combination that works") but may need to devote more space to this subject when I redesign and upgrade this website in the near future.

End of Year four of Steven Shackel's ALS/MND Clinical Study

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