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History: Raynauds, bad case of infectious mononucleosis,

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mitral valve prolapse 1997- arthralgias, nerve...
History: Raynauds, bad case of infectious mononucleosis, mitral valve prolapse
1997- arthralgias, nerve issues -tingling face and extremities - T2 bright spot 1999- A longer bout with the above. Also, lot of burning/hot cold extremities, chest pain and tight band feelings, burning eyes, ear pressure, back of head headaches, weight loss, fatigue, mental issues. Elevated polyclonal IgM, low serum complement C4. Bone marrow cytogenetics report shows deletion indicating lymphoproliferative disease, and yet bone marrow itself is fine. Lyme positive Elisa but then later Western blot negative. 2004- Low ana positive (1:40) and high anticardiolipin IgM antibodies -Miscarriages. 2008- Mitral valve open heart repair. 2012- Feeling "weird" again- mentally, neuralgias, arthralgias, IgM identified for Lyme, Elisa and Western Blot. Yet even a year after a month of antibiotic treatment, IgM remains.
2013- Intense headaches and actual seizures (high prolactin at hospital, triple the TSH of my normal) muscle spasms, cramping, burning mouth. Insomnia, psychiatric issues, anxiety, panic, manic, psychotic. Full body twitching. Eye pain on movement. Feels like Im crossing eyes, always twitching. Sometimes eye lids droop. Stiff neck and traps for 4 months. Autonomic issues. Palpitations, sleep apnea. Sometimes urinary and constipation issues; tight band feeling on legs, tingling buttocks, buzzing feet, back pain with legs cramps feel like Im going to be paralyzed. Mouth pain, feels like tonsils are twisting, painful gums. Occasional swallowing issues, tight throat. Neurologist says stiff neck and mouth issues could be dystonia. Most psychiatric drugs cause worsening symptoms and stiffness. My brain actually feels stinging, burning and infected. I feel pain on the brain. Abnormal Tests: Still have the low positive IgM and low positive anticardiolipin. For past six months very deficient C3 and C4 and C1Q serum complements. Low lympochytes. Low positive ANA/homogenous. Brain MRI shows areas of microhemmorhage. Reactivated epstein barr virus and cytomegalovirus.1- Each episode increasingly worse. I have not had a spinal MRI yet, but CSF is normal Dr doesn't think MS though, but it feels like it to me with all the body parathesias and total body nerve chaos. Something in CNS. EMGS normal. What else would cause all of this central "sensory" type pain and issues? I pass all neuro exams and have no ataxia, balance and coordination still good. I can still exercises and even run a few miles, but pay for it later with pain and burning. Mostly everything is sensory and I am in constant pain.
2- Is it possible to have a neurodegenerative disease starting back in 1997 and just showing up now, 20 yrs later? If so, which one? I am told by movement disorder specialists it is not behaving like Parkinsons or multiple system atrophy. I am told by neuromuscular specialists that it is not acting like ALS, and no small fiber or other neuropathy, etc. What else would cause full body problems? I have been tested for some paraneoplastic but not all of them.
3- Drs say that it sounds autoimmune or immune complex or lupus like disease because of the low c1Q, low c3 and low c4. I am not positive for the lupus antibodies or any other specific disease and my ESR is not high. Is it still possible to have some vascultis going on? Rheumatoid Factor is 12. Also recently started showing positive (low) on histone antibody and antithyroglobulin antibody. Negative cryoglobulins, cryofibrinogens,. negative for hepatitis, negative for smooth muscle and antimitochondrial. Slightly high/abnormal kappa/lambda ratio on serum free light chain analysis. THe low IgM still remains.
4- I note that everytime I take doxycycline or amoxicillian or get a vaccine (esp Hep B), i have a horrible return of symptoms. Could it be a chronic serum sickness?
FInally, I have an irrational fear that I have Creutzfeld Jakob disease or other prion disease. A neuroradiologist did look at my MRI and said it was not demonstrated. Could it have been in my system like this flaring from time to time for twenty years while incubating?
I am very scared that I have some neurodegenerative disease mostly. Something has gotten to my CNS and is wrecking havoc and the only real clues we have are the very low complements and vague history of autoimmune things. Could a neurodegenerative disease is causing the low complements or is it more likely that the low complements reflect autoimmune disease causing CNS issues?
I am being referred to neuroimmunologists. My psychiatrist is concerned about an autoimmune enchepalitis yet wouldn't that have show in my CSF or MRI and how could it have been around for twenty years? I am just wondering if you see a connection or pattern and what other diseases you would test for. Ive seen about 8 neurologists and two rheum's. Is it possible they all could have missed something? Do you have any ideas? The only thing I know is that low IgM n
Submitted: 1 year ago.Category: Neurology
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Customer reply replied 1 year ago
Sorry, it cut off on me. Meant to say that the IgM is always reflected on ELISA. I feel like I am deteriorating in the last 2.5 yrs but if it were a degenerative disease would one expect to see more actual deficits (i.e, speaking, writing, balance, coordination, walking, etc.). I feel like no one can give me an answer and I am getting worse and worse!!!
Answered in 6 hours by:
4/3/2016
Neurologist: Dr. Phil, MD, Medical Doctor replied 1 year ago
Dr. Phil, MD
Dr. Phil, MD, Medical Doctor
Category: Neurology
Satisfied Customers: 56,999
Experience: Medical Doctor Trained at a Top Academic Institution
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Thanks for this question

ARe there any other important details?

Any other related conditions?

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Customer reply replied 1 year ago
No related conditions thats about the full story.
Neurologist: Dr. Phil, MD, Medical Doctor replied 1 year ago

This has to be some type of autoimmune related phenomenon

have you seen a rheumatologist?

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Customer reply replied 1 year ago
many rheumatologists. They keep saying some undifferentiated issue. It seems that they are not ready to make the lupus call without joint issues, skin issues, etc. I think they are thrown that it is mainly a neurological presentation. What is your thought about neurodegenerative?
Neurologist: Dr. Phil, MD, Medical Doctor replied 1 year ago

I don't think it is neurodegenerative just because of the timeline.

20 years is a long time and rarely if ever would anything present so dramatically then progress so slowly

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Customer reply replied 1 year ago
I think its weird to have neuro symptoms in 1997 and 1999 and low C4 then- so I do feel that they are somewhat related to what blew up in 2013 b/c now both C3 and C4 are low.But lets just say that they aren't related and we run this only from 2013. I am coming up on 3 years with the current symptoms - can you opine on just the last three years as neurodegenerative? I know that things take time to develop but after 3 years wouldn't some neurologist have saw a pattern that fell into multiple system atrophy or cortiocobasal, etc. Again, everything I am experiencing is basically subjective and no deficits on examinations..... Whats your opinion on creutzfeld jakob? Unlikely?
Neurologist: Dr. Phil, MD, Medical Doctor replied 1 year ago

I think they are related for sure

I just don't think they are neurodegenerative

They are autoimmune

CJD is impossible. Not just unlikely. You would be dead if it was CJD

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Neurologist: Dr. Phil, MD, Medical Doctor replied 1 year ago

Thanks for this question

Please don't forget a positive rating. I apprecaite it

If you have more questions, just reply

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Dr. Phil, MD
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