Junior Member
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Join Date: Dec 2008
Location: tx
Posts: 17
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Junior Member
Join Date: Dec 2008
Location: tx
Posts: 17
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Quote:
Originally Posted by glenntaj
I had an acute-onset body-wide burning neuropathy that developed within hours on April 12, 2003. It has been likened to a sensory Guillain Barre in that it has an acute onset and is suspected to have been sparked by autoimmune molecular mimicry, as Guillain Barre often does.
Supposedly, the process starts when the body is invaded by a pathogen, whether naturally or by inoculation, which it then mounts an immune response to. If, by chance, though, the pathogen has a molecular structure similar to some bodily tissue (and this varies from person to person, but immunity works greatly by shape, by antibodies being created tht act like a "key in a lock", so to speak), the now-activated immune system may not be able to shut off; it attacks anything with the same molecular configuration, including bodily tissue.
Many people have antigens on nerve, especially in myelin sheathing, that do resemble the shape of certain pathogens (particularly H. Pylori, Epstein Barr Virus, and Campylobacter Jejuni ), and sometimes this autoimmune process eats away at the myelin quickly, resulting in neuropathic symptoms. Classic Guillain Barre often starts with sensory disruption and progresses rapidly to motor; in severe cases it can threaten paralysis of the autonomic systems. There are, though, many variants--it's entirely possible in my case the molecular similarity was to my small, unmyelinated fiber nerves that subsume the sensation of pain and temperature, leaving me with symptoms of burning pain but no motor disruption (this is referred to as acute onset small-fiber neuropathy). Yours may have been similar and/or involved slightly different nerve categories.
Acute onset neuropathies such as Guillain Barre will generally receed over time, but they do often leave lingering symptoms/disabilities--the general prognosis is "slow, partial recovery". I know I'm still prone to flares,a nd I'm very sensitive to nerve compressive effects; I probably have a degree of permanent damage, although I've undoubtedly have had considerable re-enervation over time, which skin biopsy confirms.
BTW, many people think that chronic inflammatory demyelinating polyneuropathy, or CIDP, may represent a slower onset, relapsing/remitting version of Guillain Barre, and it too has various variants depending on the original target of the attack.
One other thing--don't assume that this may not have been primarily due to B12 deficiency. B12 deficiency is the great mimicker--it's been confused with Guillain Barre, CIDP and other neuropathies, MS, other demyelinating diseases of the spinal cord, etc. Lack of B12 will evenutally cause deterioration of all kinds of bodily nervous tissue, and depending on whether the deterioration occurs faster in the central or peripheral nervous systems, or in the brain (B12deficiency can actually cause white matter lesions there that may look like the aftermath of stroke or MS), one can get all sorts of confusing symptoms.
Fortunately, B12 deficiency is treatable, if recognized--many have good results with injections, but people who need a more steady supply should go the oral supplementation route, taking 1000-5000mcg/day, so that one ensures that one gets enough through the 1-2% passive absorption the intestines allow--people with deficiency are usually not absorbing through the stomach, due to lack of intrinsic factor or some other reason.
Also, as far as that doc you're talking about--I know of no known toxic B12 level--there've been studies in Japan supplementing with 36000mcg/day with no side effects beyond increase in energy.
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Thanks Glen, it helps when someone has had a similar experience. I think my main problem is the intrinsic factor and I know I will need b12 for the rest of my life. I have been taking acid reducers and blockers since I was 14, now I am 34.
I have had two mri and they were completely normal, I read results and everything was unremarkable and no signs of any lesions. So I am good there.
You said you still have effects, are there any tests that you have done that came back abnormal? All of mine are normal except b12 and reflexes of knee and foot. This is why Dr said GBS. It did start right after the worst illness I have ever had, fever 102.5 that would not go down w/meds and EXTREME diarrhea that caused life threatening dehydration. I completely recovered from initial illness within 2 days, w/ weakness for 2 more days.
Dr says it I will heal totaly but it will take 4-6 months. He said no vaccines for 2 yrs and try not to get sick also.
The most annoying symptom I have right now is my proprioception. If I am not looking at my movement my brain thinks my body is in a different spot???Its hard to explain but it is constant if i am moving.
When I get all the labs back that he ordered for PN will that tell me if I have CIPD? I am getting better but it is slow going.I tell myself that the proprioception will get better and this relapse only has 3 more months to go.
Thanks
michelle
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