Any suggestions?

[macui]

Thank you for your help. 2.5 years & too many docs I remain w/persistent symptoms & no diagnosis.What began w/ mild tingling sensations has developed into constant burning sensations in my legs, primarly below the knees & my hands-recent; flu + feelings, tightness around the lft side of face, occ blurring of lft vision & lft mid calf numbing-no weakness.Persistant left sided chest pain has developed over the last 3 mos.The longest respite from the burning symptoms has been 2 mos. Symptoms worse at nite & present all over body accompanied with nite sweats.I am 47,female,NEVER been ill. W/in the past 2 yrs i've had mris of brain 6/02 (normal),cervical& thoracic-moderate spondylosis & dicogenic change, scoliosis involving thoracic, covexity to rt, min extrincic compression on thecal sac, post on T11-12. Blood:basic metabolic, hepatatic function, cbc,sed rt,b12,lyme,adolase,ana,tsh-all normal.Normal brain stem somatosensory upper & lower& visual evps, normal nerve conduction study. Neuro "clearly the patient is getting migraine accompaniments without headaches" Aside from the above I now find myself dealing w/issues never before encountered, constipation, indigestion, gerd, pneumonia.I've made major lifestyle changes re diet,exercise & stress. Something is causing these symptoms yet what i hear form the doc's is that all tests are normal - i feel as though i'm not fitting into anyones's box of readily recognizable symptoms so everything must be ok. I've done my best to remain positive & proactive about this but ... Any insight and/or suggestions are greatly appreciated. Thanks

[CCF-Neuro-M.D.-JT]

The symptoms you describe do not localize to or fit one particular region of the nervous system. However, some of the symptoms such as the burning sensations may represent a small fiber neuropathy while others like the bowel changes may represent an autonomic neuropathy. A simple way of thinking about sensory nerves is that there are large fiber and small fiber nerves.  Most of the tests we have out there like EMG and evoked potentials test the large fibers.  However, small fiber nerves which are responsible for modalities such as pain and autonomic functions (like sweating) require more specialized testing.  Unfortunately, even if the diagnosis is established, the cause is never found in quite a number of cases. Diabetes is certainly a big cause and formal testing with a glucose tolerance test should be considered. If you are in the area or willing to travel, Dr. Robert Shields heads our small fiber/autonomic lab and would be happy to see in consultation. Good luck.

[riceneuroni]

Hi, I could have written your article. ALL of it. I'm a 46 yr old female. I haven't had quite as many tests, but have had the brain scan, the barium x-ray. My stomach problems turned out to be an intensified allergy to dairy. Complete elimination of them "cured" the problem. Two years of agony and tests--and ALL the doctors assured me it was not a food-related problem.  B12 injections monthly are mandatory now for the neuro pain. The shots had been keeping the pain almost completely gone until a couple weeks ago. I was out of the wheelchair from mid November till now. This pain started the Spring of 2002 and I was in the wheelchair till I started the shots just before Thanksgiving. Hmmm. I beginning to hope there might possibly be a seasonal allergy connection since I can't find any ailment or food connection. Exactly when did your symptoms develop and when were those 2 months of relief you mentioned?

[Spring-02]

Lots of unexplained sypmtoms and no diagnosis, that theme keeps reappearing in many of the neurological forums.  I fit into that category as well and have had an MRI to the head and spine, EMG to left leg and foot, EMG to right arm and hand, EEG to head, all of which have been normal.

I am a female age 56, who has been afflicted with unexplained pain, numbness, pins and needles feelings, body twitches and electrical sensations in the head, that sound like elastic bands snapping.  The other night I had about ten body twitches and it was very disturbing.  They seem to happen just before I fall asleep, when I am in the first stages of sleep, but still partly consious.

I had foot drop in the fall of 2001 and then I started having periods of dizziness, vibrations and painful, sensitive eyes.  I couldn not stand any bright light, nor could I drive in the car, without jumping at any little thing and practically  had to cover my eyes, as the approaching cars made me dizzy.  The dizziness and vibrations have calmed down but some days I will notice my legs are quivering or see the muscles moving under the skin.  

The arch on my left foot was affected by the foot drop and it is now higher than my right foot.  That affects my walking as I am down on one side.  I can walk about five steps and then I have to stop as I go sideways.  I have left sided weakness, which affects my balance and coordination.  The numbness in my fingers and hands affects my fine motor skills.  I go to the Pool and Joint Works run by the Arthritis Foundation twice a week and I really give my legs and arms a good workout.  I can't walk any distance as my legs tire and it is not too safe as I can easily lose my balance.  I am OK on level surfaces but have never been able to regain my normal walking gait and don't do well on stairs or slopes.  

I have an exagerated startle reflex and my knee reflexes are hyper.  At first my neuro thought I had a Central Nervous System disorder and that my neurons were misfiring.  They also suspected MS, but since the MRI and other reports were clean, that has been ruled out for now. I have a second cousin and a grandaunt who had MS and both came down with it in their 40's and 50's.  I also had a grandfather and two aunts who had Pernicious Anemia, but they tell me my B12 levels are OK.  My brother was suspected of having Charcot Marie Tooth, but now they think his footdrop and leg problems are because of a bulging disk in his back.  He had scoliosis as a child and has Harrington Rods in his back.  He does not have burning pain like I do with my foot.  The sole of my left foot is very tender and I find myself walking on the side of my foot or my toes to keep from aggravating the pain.  

I also have speech problems that came on in the last year.  I either stutter by repeating the first word about five times, or else I can't seem to get the right word out, or say them backwards.  It doesn't happen all the time, but I can never predict when.  

My cognitive reasoning abilities have not been affected and I do not suffer from clinical depression.  I did go see a mental health therapist for six sessions and she verified that I was not clinically depressed, but was just reacting to this the same way anybody would, whose lifestyle has completely changed and there is no medical explanation for it.

I have a history of allergies, had Bell's Palsey in my thirties, chickenpox as an infant, convulsions as a toddler and my mother died of a brain hemmorhage at age 48.  

I am managing as best as I can and am awaiting a referral to a major neurology centre where they will begin testing all over again, and hopefully find the reason for these sypmtoms.  Primarly the pain and numbness affects my left leg from the knee down to the foot and toes.  My right arm from the elbow down to the fingers and toes and my right hand and fingers. It feels like I slammed my elbow down on something hard, yet it doesn't feel tender to the touch.  

The pain in my foot can either be burning hot, or else it feels cold, numb and dead.  I have weakness on my left side, as confirmed by an Osteopath doctor, who is also an MD.  My massage therapist noted the difference between my left and right sides as well as the Therapeutic Touch practioners.  

I have exhausted all different possibities in trying to find a cure or answer for my problems.  I had a virus just before my foot drop and a rash which was around my waist and moved up to my chest, but my doctor said it wasn't shingles. That summer of 2001 was when the leg cramps started and the burning pain, but since I was going through menopause, I attributed it to that. Only when I couldn't walk normally anymore and a lump developed on my left foot, did I consult my doctor.  I had foot and back X-rays and Sciatia Nerve was ruled out.  I guess I know what I don't have, but like a lot of others, don't know what has caused these symptoms.  

Chronic Pain changes a person and limits their lifestyle and affects their sleep and feeling of well being. When a person has cancer, or even other known neurological disorders, at least they have a label or explanation.  When people notice I can't talk right or walk like I am having one too many, I can't tell them why and I think that is the most frustrating part of it all.  Way too often, doctors are too quick to misjudge a person and if the medical reports do not show conclusive evidence to justify their syptoms (symptoms), they are labeled as being pyschotic.  

These people then fall through the cracks, the insurance companies almost treat them like criminals and their families wonder if they are really sick or just looking for attention.  Well, if you were to take a survey I am sure 100% of these people would want their former painless lives back again.  There seems to be support groups for almost every illness or disorder out there, but where do the "Unknown Cause" people go to for help.  

Pain doesn't show up on an MRI and unless you walk in that person's shoes, you will never really know what they are going through.  How do you measure weakness, does the EMG always show that nerve damage exists?  What are accepted B12 levels?  No two people are the same, nor will they react the same way to damage to their nervous system.  I don't know why some days I feel normal strenght in my hand and arm and other days I just drop something,as the pain shoots up the wrist and arm.  No, I don't have Carpal Tunnel and I don't have High Blood Pressure, Diabetes or any of the regular diseases.  I am perfectly healthy, except for my allergies, swollen eyes and petechiae, (tiny blood spots) on my body. I have angio-neurotic edema and sensitive skin and an over active immune system.  I still think that the rash I had may have been a virus that somehow triggered my immune system to turn on my own body.  That is only my explantion but it would be very interesting if people with undiagnosed neurological disorders would think back to the certain point in time, that their symptoms began to see if there is a similar correlation here.

Best of luck, don't give up the fight and keep the faith.  Prayers and moral support are certainly a big part in keeping your sanity and try to have a positive outlook and hang in there.  

The Canadian

[riceneuroni]

Hi. Hope you don't mind me piping in again. Canadian, at first I thought your symptoms were far removed from mine and Macui, but even though they are different, you brought up some interesting connections for me. I too had a rash for a long time running from my back around to my front. It was never much of a bother.

I know years ago when I started feeling weak and had stomach problems my doctor would give me some antibiotics and then I'd feel fine. They stopped that practice and I couldn't get any more and have kept feeling worse and worse over the years. I knew for a long time there was a connection. Mind you, that was 10 years ago--before this neuropathy--doctors would never consider a connection, but I know how I've felt--and it has all been connected.

Of course they've now scoped my stomach and checked for Hpilori (or however you spell it) and found nothing. Now I believe it's too late for any regular antibiotic treatment to help. This has gone too far for too long and affected too many systems. O

n the B12 issue my level was "normal" but on the low end. The lab report said 5 to 10 percent of people have neurologic problems when the level in on the low end. So my doctor gave me a shot, and I kid you not, I was walking again within hours! My feet could not so much as touch the floor before the shot. Since then, as soon as they started tingling and burning I'd get a shot and the pain would be gone by morning. This last time I waited from Wednesday to Saturday. By then I was in terrible pain. The shot did not help. I'm trying to figure out why.

I'm wearing surgical masks now when not at work to try to avoid breathing possible contaminants and I'm getting someone to help clean. That will cut down on dust and mold. Honestly, though, I think unless someone's got something that will kill whatever is causing this, I'm just swatting at mosquito's and missing the breeding pond.

Hope you keep talking and others join in. What have ya'll been trying and what has worked? What hasn't? Don't give up.

[Mysterious Stranger]

Do any of you consume aspartame (Equal, Nutrasweet)?  Do you consume diet sodas?  If so, how much do you typically consume in a day?

[macui]

Many thanks for the feedback.  I've got to run but i wanted to thank you for your thoughts - i'll post again when i have a bit more time.

[Renestrange symptons]

I too could have written the first question in this thread.I am 43 YO female never been sick.8 months ago I was in high stress along with a body ache Flu bug as I thought. I've never been the same.I started haveing fasculations on rt calf,then across shoulders, got worse with more strenuous usage.I then started having vibration feelings in rt and left leg. There are days I feel like I have a flu bug shooting pains throughout body. THere was a time my feet burned to touch the floor, not debilitatiing but uncomfortable. I have had burning sensation from very beginning between elbow and shoulder. PCP treated as tennis elbllow, bands helped but would come back as soon as I stooped using bands. The tremors have since moved to upper neck and internal base of skull. Very unnerving feeling to feel movement inside of head. I have also developed rt eye twitch and fasculations on rt face and burning eyes intermittently. Had Brain,cervical and thoracic MRI's all normal. Basic blood,proteins,B12,Lyme, EMG of arms. Tried baclofen helped some but now taking Mirapex. Helping with tremors but fatigue andeye burning continues. Jsut covering problems now not finding the cause. Hopefully someone can isolate or find common thing.

[midsummer]

Yes I am familiar with the multipul symptom roller coaster.
Vocal disorder of 55 months........undiagnosed.
Discomfort... band of pressure around the rib cage, tenderness and aching muscles in this area......55 months. The only relief I get from this is if I hold my breath......not very practical...........never investigated.
Involuntary arm jerks.............never investigated.
Pain after using any muscles anywhere in my body for more than 10 mins..after that flu like pains and total collapse including shallow and difficult breathing.....never investigated.
Swallowing problems............recently diagnosed as Achalasia but this opinion was disputed by a Consultant Radiologist when I had a barium meal recently.
Bowel problem .........thin stools for two and a half years plus anal sphinkter does not respond any more to the presence of a stool...lots of GTN............seeing someone about that in two weeks...
Never been seen by a Neurologist, never had an MRI or EMG spent most of the time being told my problems are psychological or reflux even though tests that I have had done have proved other wise.................what a medical maze.
My heart goes out to anyone in the same situation.
No work, no benefits............just lots of health problems and increasing debts.

[macui]

As i was reading these posts and those following AMC5's question I found myself drifting back to a question that has nagged at me since all this began.  My symptoms started during a time of great emotional stress for me, my fear about what was happening to my body only exacerbated the situation. I initally dealt with everything with a mild hysteria which has calmed considerably  but I remain just as preoccupied with the situation as ever.There seems to be a never ending series of symptoms for me to contend with.  I often wonder if my heightened awareness of my body causes me to note things that once went unnoticed or were brushed aside; whether or not my constant mental vigilance impacts my physical self. My focus on my health to the exclusion of many things in my life has placed me in a position were I'm not making decisions about my life. I cant help but think my thoughts of possible illness takes it toll. I see and hear of people with grave illnesses and say a silent prayer of how fortunate i have been and think i need to  get a handle on things. I wonder if a diagnosis would change any of this. Before this began I never would have considered myself afraid of life - i would never have thought I would handle a situation like this from a position of fear. I cant recall ever being so dependent on others for help (doc's) When i sit and think about it i realize that this ongoing experience has shown me some sobering things about myself. I've learned i'm afraid of death and hesitant about living.  Any way I know this is a medical vs therapy forum but i somehow found myself not wanting to compare symptoms anymore- i think no matter what unfolds i'll be able to deal with them it's the emotional aspects that i find so difficult and isolating.  I hope we all find what we need.

[midsummer]

I can relate to what you are saying. I for one would feel better if my problems had a name. I seem to be continually fighting battles with the health system to get the tests I feel I need done.
It has taken over 4 years to get the test done that verified the problem I have with my oesphagus which I was adamant I had.
From my point of view there are conditions that carry a lot of different seemingly unrelated symptoms, its just getting to the right Doc who can diagnose you.
From the brain satisfaction point its best to have diagnosis than a long list of symptoms.

[Spring-02]

Hi again:
When we can't find any answers, the assumption often is that "stress" may be the reason for our medical problems.  I can reassure you that I had no reason to be stressed out and this was to be the best part of my life, the kids were grown, work was good, marriage fine and no financial problems.  I also am a religious person with a strong faith and now that I have been into this for nearly two years, my life has taken a different direction.  I still have my old friends but I don't see them that much.  My husband was always my best friend and still is but I have met other wonderful people in my discovery journey through my illness.  I may not have met them if I was not afflicted with these medical problems.

My old co-workers hope that I can return to work, but my mobility problems hinder me from doing a lot of things.  My pain is more burning in the summer time and I attribute that to the heat.  When, and if, I get to see the neuro specialists in Montreal and find out the cause of my problems, I will post to this forum.  

Best of luck and hopefully by sharing our symptoms and treatments, we may be able to help others.

Have a great summer.
The Canadian

[macui]

My comments about stress & comparing symptoms were concerning my situation only they held no judgement re others.  I do agree that the stress, anxiety response from doc's appears to be quite common especially in regard to women when a diagnosis is elusive.

[Jamie327]

I also have had vocal problems for years. They first appeared at a time I was under great stress, caring for a chronically ill parent.
My first word would suddenly JUMP out of my voice box- loudly- like I was startled. It was bizarre. Still happens sometimes.
Its almost like a stutter- but more like a weird vocal muscle spasm.
I also sometimes have small areas of twitching muscles around my ribs and chest area. Feels like my skin is "crawling" or like I'm receiving an electrical shock to the area. It can last for hours.
Weird symptoms- nobody knows what they are. Doctors dismiss them as probably "psychological."
Ive learned from dealing with physicians for years with my parent's health problems- that doctors knowledge is severely limited. If they dont know the answer- they call it a "psych problem." Very few of them care or show any interest in investigating a cause- even for serious health problems if the tests all come back "negative."
Have you noticed that doctors do not touch their patients anymore? You could have a knot the size of a softball in your back and they will send you for a "test" rather than touch you to feel it for themselves. I learned that when I developed large knotted up muscles near my spine. The knots were so hard- my massage therapist thought I had a tumor --but my physician would not touch me to feel it for himself. Of course, soft tissue damage doesnt show up on any "test" so they tell us that there isnt anything wrong with us.
Its best to just stay away from doctors as much as possible.

[midsummer]

Jamie, my ill health was environmentally induced, toxic fumes.
I was sent to a psychologist by ENT who sent me back to ENT saying that my problems were not psychological.
All my symptoms either appeared at the time of exposure or shortly afterwards and have been on going.
Despite spending 4 years saying I had swallowing problems and being told it was psychological without any tests being done, now that I have had tests that show I have a problem I am being told I should see a neurologist but no one is taking responsibilty for the refferal.
The fact that my problems have been on going since the exposure is being ignored and they are being treated now as problems occuring recently and not related to the exposure...............what a cop out. I always put everything in writing so have letters I have sent to Docs from the onset stating I have specific problems and listing them.
Bagging my head against a wall comes to mind.
Tell me more about your voice, mine is very strangled and strained but I was told it is not SD despite a spasm being seen during a scope.............more head banging.

[Mysterious Stranger]

No one seems game to answer my question.  I will just throw this out, in the hope that it helps at least one person.  As it has been eloquently pointed out here and in other messages on this board, there is a significant portion of the population that suffers vague neurological symptoms that defy diagnosis other than the usual ambiguous "fibromyalgia" and similar syndromes.  All I can do is make the suggestion.  You have to consider whether it is worth the trouble to explore it, but if all testing has failed to identify the cause of your problems and my suggestion is so benign in its imposition on your lifestyle, why wouldn't you consider it?
    Stop -- cold turkey -- for 60 days ALL consumption of aspartame, in diet sodas, and ALL sugar-free products containing the aspartame sweetener.  It is 10 percent methanol, a significant neurotoxin and excitotoxin that, at least in some people, over time is poisoning your nervous tissue.  You are slowly and insidiously being poisoned with formaldehyde and formic acid.  For many of you, it will make no difference as your neurological conditions are the result of other environmental or developmental causes.  But at least for some of you, eliminating the slow pickling of your nervous system will result in improvement of your health.  There are dozens of good sites on the internet with information from board-certified physicians and researchers who understand the risk posed by the overuse of the ubiquitous aspartame sweetener.  You can read them, or you can just try it for the hell of it.  What do you have to lose?   Can you not abstain from consuming the stuff for a mere 60 days?

[riceneuroni]

Mysterious Stranger, I appreciate and applaud everyone who brings up all potential culprits of our mysterious neurologic problems as I am always looking for some cause, some possible solution I can try. It gives me a sense of control. I have not responded to your aspartame questions because I have NEVER indulged in it or any sugar substitute or any food containing them. Sugar agravates the symptoms so I avoid that too--always have since it has always aggravated the fibro. And while we're surveying, so does (for me at least) salt, yeast, flour, gluten, dairy, alcohol, hot dogs, and I'm sure a host of other things I haven't yet discovered. Anyone with any other triggers, pass them along and I'll try eliminating them too.

Oh, the masks seemed to help. Wore them for a week and kept feeling better, had them off most of last week and have continually gotten worse. Started wearing them again today.

[Mysterious Stranger]

Thanks for the response.  Yikes, it does sound like you have a lot allergies/sensitivities.  I really wish you luck in finding answers to questions that benefit your health.
     Since you are open-minded, may I pass along a couple of ideas that are definitely in the speculative category of current thinking, but promising perhaps.  A lot of folks here seem to have somatic/autonomic sensitivities that are not easily diagnosed and treated.  If you haven't already explored it, I think the writings of Peter D'Adamo are interesting.  He's an advocate of structuring diet around differences in blood type.  He has several books (the first was "Eat Right 4 Your Type") and his last couple of books are very well written and thought-provoking.  Particularly for people with autoimmune disorders, his thinking about the possible deleterious effects of lectins on certain phenotypes is intriguing, although controversial.  Maybe you will find something in his books that helps you avoid foods that cause problems.
     The other book I've been impressed with lately is called "Water: For Health, For Healing, For Life" by Dr. F. Batmanghelidj.  If you bother, read that book and not his earlier one, which is poorly written and edited.  The book mentioned is thought-provoking and may also be of some help to people who are frustrated with the limited benefit they have received from traditional allopathic medicine (although Dr. B is an M.D. himself).
     Good luck to you.

[macui]

Apologies for not responding to your post - i'm pretty carefull about ingesting anything with artificial color, flavor & sweeteners. I should qualify that - prior to the beginning of my symptoms (10/2001) I was rather cavalier about my eating habits; In my twenties I drank quite a bit of diet soda. Subsequent to the onset of my symptoms I've become very aware of what I'm eating and  as far as the sweeteners are concerned I have not consumed them for quite some time. I'm in the process of eliminating milk & animal products and continue to working on eating more veggies and fruit. Eating well is  initially far more complicated than I would have imagined but as I gain more info it has become easier with time.

As far as other triggers I wonder about the years of taking tetracycline (sp?) for skin problems. I cant recall any other drugs I took for prolonged periods.

The up side of all of this is that I've been continually educating myself about my body and what I need to keep it healthy- all good stuff.

Thnks again for your input.

[azurerain]

I too could have written the first post.

I've been at this for 3-1/2 years now. I am a 44 year old female, former long-distance bicyclist.

My symptoms include numbness of the right foot which will spread upward to the leg and thigh an buttocks. Also left neck pain, bilateral hand (thumbs & forefingers) and arm numbness (in a band extending up from my thumbs) ,left sided chest pain (had numerous EKGs, echocardiogram, and coronary angiogram which were all normal). When these symptoms get very bad I will also develop numbness over my entire body, a flu-like, altitude-sickness-like feeling, and dizziness. I have now gotten to the point where any exertion brings this on, and I am just barely able to work. I have had five major exacerbations and in retrospect I can link all of them to bicycle-riding in which my neck was hyperextended because of high wind. I had MRI of head and neck in 1999 which were reported as normal.

I was evaluated for autoimmune diseases, diabetes, thyroid, saw an endocrinologist, etc. All of the tests said I was the picture of perfect health, so the doctors started treating me like I was mentally ill and wanted me to take antianxiety meds. I refused as I insisted this is a physical problem.

Interestingly, I recently saw a metabolic specialist neurologist, who ruled out all known metabolic disorders but he did decide to repeat my CNS MRI's and NOW I have a very apparent C5-6 disc herniation! Looking back on the 1999 MRI, it is obvious that this herniation was already there (smaller) but the radiologist apparently thought it was insignificant and did not report it.

This herniation is on the left side and appears to be compressing my spinal cord in an area (spinothalamic tract) that brings many of the sensory neurons from the RIGHT side of my body to my brain. So, it now looks like this could be causing many, if not most of my symptoms. The neurologist who ordered the MRI's was convinced of this and had me referred to a major university neurosurgery department.

When I saw the neurosurgeon, I was stunned, as he told me before he even examined me or asked me any questions that it was impossible that my disc herniation could be causing my problems. He flat out asked me if I was seeing a psychiatrist! I was so taken aback after this, that I didn't say a whole lot more. I tried to talk to him about the bicycle riding, etc, but he wouldn't listen.



Well, I am convinced that the disc is causing the problems. I see another doctor this week, and I will keep going until I have exhausted

[azurerain]

My last post got cut off.

I will keep going until I have exhausted all options to get surgery and get this disc removed.

My physical therapist, who also looked at my recent MRI, said that the size of the herniation doesn't matter. It is like a litte pebble in your shoe. If you rest you will get better. If you exert yourself (even walking on level ground is exerting myself) or move the herniated vertebral joint around much, then the herniation will rub and cause inflammation and the inflammation can cause severe symptoms, even if the herniation is small. Inflammation doesn't really show up on the usual tests like MRIs, but it can affect your entire spinal cord in that area. In the neck, this means it can affect the nerves coming and going to the entire body which can cause all sorts of weird symptoms.

Take care everyone, and it can sometimes be VERY informative to repeat MRI's or other imaging that was previously reported as negative. Also be sure your MRI's are read by a NEUROradiologist!

[macui]

So interesting! I was also told that in no way could my symptoms be caused by any disc problems.  I'm very interested to hear the results of your next neuro visit.  I have an appointment at the Cleveland Clinic at Weston next week. I'll let you know how it goes.

[Freddd]

I see a whole lot of symtoms characteristic of severe methylcobalmin deficiency as I too had for 50+ years.  All your tests for B12 could be entirely normal if you take cyancobalamin in a supplement and yet still hav e severe neurological deficiencies.  You can by a bottle of sublingual methylcobalmin for $8 to test the hypothesis.  I did and it changed my life.  The severe abnormal fatigue, lifelong depression were GONE in 1 hour.  The thick sticky jellied mucous became normal within 2 weeks.  MethylB12 is harmless.  This hypothesis can be tested for $8.00 at a healthfood store.  I am happy to say I am recoving after 50 years of n\mysterious symtoms and all downhill.

[azurerain]

My neurosurgeon visit this week was almost as bad as the last. This neurosurgeon still insists dogmatically that it cant' be the disc, though that is really the ONLY thing it can be. Retrospectively, I can see how innumerable things that I did that were stressful to the neck brought on my symptoms (bicycling with neck hyperextended, playing saxophone, doing a lot of computer work with neck extended rather than flexed, among others).  One neurologist and my PT thinks that it IS the disc and I have to agree.

Very happily, since I realized that the disc was probably the problem and have taken a lot of steps to cut down on my neck motion, I have GREATLY improved over the past month and especially the last 2 weeks. I am finally able to walk about without bringing on symptoms, and I'm planning on turning in my wheelchair this week.

My work consists of very repetitive motions and I was constantly moving my neck--up, down, right, left-- over and over hundreds of times per day. I have stopped that now (I am using reachers to pick things up that are below my waist or over my head, and I turn my body rather than my neck to look left or right). I am keeping my neck slightly flexed to the right (herniation is on the left) as much as I can. I am also taking ibuprofen 800mg around the clock instead of sporadically a few tabs a week like I was before.

I am beginning to think I might actually be able to recover without surgery, so the doctors may have been right on the point that the disc was smaller than they usually operate on. Their insistence that the disc wasn't causing any of my problems is what really bugs me. I think they are doing a great disservice to people by dismissing those of us who are getting nasty symptoms from smaller herniations. I wasn't even offered any PT (I had to ask for it) and I had about 6 doctors who were very patronizing to me and treated me like I was mentally ill. What would be my motivation for faking this? Even through the worst of the disease, the only work time that I missed was that for actual doctor's appointments and diagnostic tests. I NEVER called in sick for this (if I had I would have missed hundreds of work days and been fired long ago).

I was a  perfectly healthy endurance athlete before this all began (almost never went to the doctor), and I hope that I can prevent reoccurences by paying attention to my neck positioning and return to my former state of health.