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Neurology (Expert Forum)
CIDP, Lyme, Lupus/Autoimmune Combo? Now have some foot weakness,tremor(new) pain
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CIDP, Lyme, Lupus/Autoimmune Combo? Now have some foot weakness,tremor(new) pain
by burningpains, Jan 18, 2007 12:00AM
30 yr male. Nonbacterial prostatitis for 10 years but just started to get treatment in February, 2006 (1000mg/d Aleve + alfuzosin HCl). Prostate got temporarily better. Mid-April (after going back on Aleve for only few days), got acidic muscle burning pains in entire body, liver area pain (sharp jabbing) for 36 hours, regular, quick clubbing-like pain EVERYWHERE from ear lobe to toes,didn't sleep for 4 days in a row and then crashed, this pattern went on for months. Also noticed strange reflex- hit my left forearm muscle, fourth toe on left foot would jerk (still does). Hyperreflexia. Tested for ANA (1:40), STDs, B12, do have high mercury (although many chelation sessions haven't helped), brain MRI, c-spine MRI, normal EMG/NCV, etc Several neurologists seen- all had different opinions (post-viral was just 1...never mind the fact that I kept getting worse each week),few weeks later started getting water dripping sensations down my leg and then it was everywhere,then few weeks later (still having all other symptoms),all joints got stiff,beau's lines..then came the electric shocks (again, everywhere) and bee stings,suicidal. Igenex Lyme results were iffy (although had positive band 58, IND on 39, +41), low cd-57 (36)-tried 5 months of antibiotics (no herxing/improvement even on IV Rocephin and other oral abx). It's 9 mo. later,still get parasthesia, pain, twitch every 10 seconds w/o any breaks. Recent NCV and sweat, heat sensitivity tests now abnormal (have dysautomnia, small fiber+ large fiber neuropathy. IVig next? dx w/CIDP, sister had very high ANA. all pain meds useless
Doctor's Answer
by CCF-Neuro-M.D.-SH, Feb 06, 2007 12:00AM
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The symptoms and story that you describe are consistent with the diagnosis of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP). This is a condition where your immune system attacks your peripheral nerves (including the nerves that regulate your autonomic system). This causes weakness, pain, and a wide variety of sensory disturbances (as you have described). The treatment for this condition is less than optimal. Treatment is generally not durable (has to be repeated on a chronic basis) and does not reverse many symptoms, but rather prevents further progression. Some sucess has been found with combining 2 treatments at once. Current treatments include corticosteroids (prednisone), IVIG, Plasma pheresis (also called plasma excahnge), and cyclophosamide. Corticosteroids have the side effects of immune suppression, weight gain, skin problems and osteoporosis that limits their long term use. IVIG is generally well tolerated, but some people can have reactions including fever, shakes, allergic reactions and rarely thrombo-embolic events. Plasma pheresis requires invasive intravenous access and is only available at large centers. Cyclophosamide is often combined with the above therapies, and has the main side effect of immuno-suppression. Despite our best efforts, one third of patients do not respond to treatment. Treatment also includes medications for neuropathic pain including Neurontin, Lyrica, Elavil, Cymbalta, Topamax, Effexor, etc. Given your history of suicidal thoughts, I would also recommend that you see a mental health profesional to help you cope with the stress this has placed on your life.
I hope this has been helpful.
The symptoms and story that you describe are consistent with the diagnosis of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP). This is a condition where your immune system attacks your peripheral nerves (including the nerves that regulate your autonomic system). This causes weakness, pain, and a wide variety of sensory disturbances (as you have described). The treatment for this condition is less than optimal. Treatment is generally not durable (has to be repeated on a chronic basis) and does not reverse many symptoms, but rather prevents further progression. Some sucess has been found with combining 2 treatments at once. Current treatments include corticosteroids (prednisone), IVIG, Plasma pheresis (also called plasma excahnge), and cyclophosamide. Corticosteroids have the side effects of immune suppression, weight gain, skin problems and osteoporosis that limits their long term use. IVIG is generally well tolerated, but some people can have reactions including fever, shakes, allergic reactions and rarely thrombo-embolic events. Plasma pheresis requires invasive intravenous access and is only available at large centers. Cyclophosamide is often combined with the above therapies, and has the main side effect of immuno-suppression. Despite our best efforts, one third of patients do not respond to treatment. Treatment also includes medications for neuropathic pain including Neurontin, Lyrica, Elavil, Cymbalta, Topamax, Effexor, etc. Given your history of suicidal thoughts, I would also recommend that you see a mental health profesional to help you cope with the stress this has placed on your life.
I hope this has been helpful.
Also, no Lyme co-infections detected, but have had history of short-term memory loss, dyslexia, word-retrieval problems, strange sweating patterns, eczema, prostatitis (as mentioned before)...also HLA-DR4 and HLA-DR7 positive...maybe this is all an autoimmune problem...everything in my body feels like it is being attacked -- nerves, bones, muscles, connective tissue, skin...seem to be getting worse every single month no matter what I try in terms of medicine. HELP!
I have some similar issues. Have they figured out what the cause of your dysautonomia is? Has any of the blood work you had pointed to a cause? Also, have you definitely been dxd with CIDP (and how was it dxd?) and do they think the autonomic dysfunction is part of your CIDP or a separate issue? I have read that autonom. neuropathy is rarely seen with CIDP, but there are people who do have both--have been reading extensively on it. Also, do you have any autonomic neuropathy (BP issues, etc.) or just the abnormal sweating patterns?
I was just dxd with autonomic neuropathy (probably autoimmune in nature), but I just found out yesterday that none of my blood work pointed to a cause (I had blood work done on everything-a paraneoplastic panel, antibodies for LEMS, MG, nAchR antibody, amyloidosis, Stiff man's syndrome, diabetes, etc.). My QSART was the only abnormal test in the autonomic lab (showed hypohydrisos of leg), but I have severe gastroparesis as well and had a past Horner's syndrome-probably why the QSART was abnormal. I was also told last month at Mayo that I might have some CIDP along with the autonomic neuropathy, as I also have non-autonomic symptoms-weakness, paresthesias, etc, as you do. I don't have a definitive dx yet, though, as to whether this is a wholly PN or a CNS thing causing the dysautonomia, and plan to return to Mayo for further work-up (including LP for MS), but I was curious what they think the cause of your auton. dysfunction is and if they think it is part of your CIDP or a distinct phenomenon.
Anyway, I haven't definitely been diagnoses with CIDP -- I am actually hyperreflexive and only have minor weakness, but I had slowing in my NCV, so they know there is peripheral neuropathy (diabetes, B12, other usual suspects have been ruled out), so they think it is being caused by inflammation