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jbmd, Board Certified Physician
Category: Medical
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Experience:  Board Certified physician in Internal Medicine - 30+ years experience
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Approximately 35 years ago I had massive neurological

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Approximately 35 years ago I had massive neurological problems which affect my whole body, which were not adequately diagnosed. I gave up visiting doctors. After being forced to sacrifice my career, I am still suffering, but with the onset of old age, it is becoming more unbearable. Has neurology advanced in the past 30+ years. Is it worth going back to a neurologist. I know that doctors don't like people self-diagnosing. However, all I can say is that my symptoms are almost identical to those of people with CRPS. I don't believe that was even considered in my case, back in the late 1970s.

Hi--I'll give some advice about things. First, I never mind people diagnosing themselves, as it means they are doing research and are actively engaged in their healthcare. I only mind when they stick to the diagnosis in the face of information that would say they might not have whatever they've diagnosed.

Where are your symptoms exactly and what are they--just pain or sensitivity to touch? Others? How did this start?

CRPS is very painful but there are treatments that seem to work for it.

I can't examine or treat you or replace a local doctor's care but lets see if I can give you some more information that will help direct your care.

Customer: replied 4 years ago.


It started with sudden loss of use of muscles, eg drop a glass,drop a baby, couldn't lower self into chair (just "dropped") - at the same time, massive headaches and pain all over body, loss of ability to feel with hands and feet, confusion, eg couldn't tell where sounds were coming from, couldn't judge speed and distances of cars, memory loss, couldn't find words. Had test for MS - negative. Developed multiple chemical sensitivity. Seems to affect my whole body in some way - eg trouble swallowing water at times. Worse if I am overtired. Constant burning pain (and other weird sensations, like crawling skin), particularly feet.

Poor balance and judgement (ie bump into things). Heart races/ loses rhythm. Muscles can tire very quickly/instantaneously, and there is just no strength at all left, eg cannot brush my hair, cannot walk. Vision going off is my first warning that I am about to suffer a collapse. Standing is harder that walking. I am definitely *not* suffering depression or other mental illness. As I am nearly 60, problems like loss of balance seem to be getting worse, plus difficulty sleeping because of the pain is making life harder. Is it worth getting retested after 30+ years of invalidity, and if so, what sort of doctor could help me. (Incidentally, my thyroid stopped working properly about 17 years ago, so I thought maybe I could have some sort of auto-immune disease, so perhaps should see an endocrinologist rather than neurologist?) I take thyroxine, my only medication. I never tell my doctors about all my other issues. Last time I did, I was sent to a psychiatrist (no help whatsoever!)

Customer: replied 4 years ago.

II forgot to say - it is painful to sit on a toilet seat, have someone hug me etc

I think you need several doctors to sort out this complex situation--probably at a high level facility/university setting.
I would test you for a variety of thyroid and auto-immune disorders, having seen similar situations with vitamin D deficiency and certain B vitamin deficiencies, though I have to say that yours is the worst case I've heard of.
The doctors recommended would be a neurologist, an endocrinologist, a rheumatologist, and a nutritional expert, all under the direction of a good and curious general internist.
Has anyone ever tried medications like Lyrica that work for nerve pain (like diabetic nerve pain) or Cymbalta?
You have pretty classic symptoms CRPS but generalized.
Is it worth investigating again? It's not a good option NOT to be tested as you only have one life and if you get good years now as a result it's worth it. They may not come to an answer but if you don't take a shot, you cannot hit the target.
I don't think it's psychological but obviously, being in pain like that and having such diffuse symptoms would give you some psychological issues!
Often I recommend biofeedback and neurofeedback and I think that would be a good idea after or even while you are being screened. Why? Because after all these years you probably have the need to integrate the way your brain perceives and learns to ignore some of these symptoms, whether or not they find an answer.
You sound like the ideal patient for a sleuth of a physician.
(further: do you have digestive issues, feel worse after eating certain foods? Has anyone done EMGs/Nerve conduction studies on you--putting little shocks of electricity through your legs, for example?)
What you have may be unusual or unheard of but that doesn't mean unreal. Rare diseases are rare, and some are cases of one.
Phew! That's a lot for you to read and digest!
Customer: replied 4 years ago.

Wow - thankyou.

I felt I had been put into the "too hard" basket 30+ years ago, and gave up asking for help.

Maybe I will approach the local university and see if they would like an interesting case. I just don't know eactly how to approach them

Yes, I do have major digestive problem, many things I cannot eat, and sometimes I vomit just trying to swallow simple foods like a pear.

I do have an inkling that it may be the result of massive exposure to untested chemicals during my childhood, when my father was testing sheep dips for a chemical company, and I was often covered in these unnamed chemicals. I had undiagnosed tummy problems all through childhood, but the major neurological issues didn't start until about age 23.

I am hoping to live another 30+ years, and would like to do it with some quality of life - I will definitely follow up, thanks to your encouragement.

What sort of doctor does biofeedback and neurofeedback? - that sounds interesting.

It is not a nutrition problem as such, as I have been almost fanatic about that, plus my son is qualified in nutrition, and supervises me well (but it could well be an absorption issue)

Thankyou again for taking me seriously (and yes, I did have a long period of depression, "why me" type of issues, but am well beyond that now)


The best way to approach specialists is through your own doctor--if he/she isn't interested enough, then he/she shouldn't be your doctor.
Think of all the disorders that were thought to be psychological: celiac, irritable bowel, even inflammatory bowel disorders, fibromyalgia, migraines. For goodness sake, asthma was thought to be driven by neuroses. Things people can die from. So as a doctor I usually say, if we haven't found anything, it doesn't mean nothing's there. Sometimes you're just the unlucky person with a disorder just before the cause and treatment are found.
Psychologists and neurologists and neuropsychiatrists do biofeedback. Sometimes they have technicians that run it. I'd check with the neurologist and look online or have your son do some research. There are protocols for chronic pain.
Here's a little article on it:
and here's an article in the NYTimes:
If you are satisfied, please rate the question and it will close. Hope this all helps!
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