Need Help! 31w/undiagnosable neuropathies!

[VRock]

Im a 31 yr old male, self-employed gym owner and fitness enthusiast, diagnosed w/U.C. 2 yrs. ago. Daily I take Pentasa 4g/day, 50mg of 6mp plus folate. Four mos. ago probs started. Mild muscle soreness in forearms, then traveled to hands, legs & feet. No severe cramping. My arms would tingle and go numb from the shoulder to my fingers. My legs and feet would ache and also get a numb/COLD feeling and tingling sensation. It would be intermittent and switch from side-to-side and limb-to-limb with no obvious pattern. I have been to 4 primary physicians, 3 neurologists, a pain&rehab specialist, a Sports Doc, my eye dr., dentist and gastro & I have had the following tests conducted (sometimes more than 1x) Chemistry, glucose, Liver and Kidney functions, Magnesium, Lipid Panel, Thyroid Function, CPK, PSA, Testost, Hematology, CBC w/diff., CRP, homocysteine, free t3, sodium, potassium, bun, creatine & entire panel, Cholesterol, all Hepatitis, CBC w/diff./platelet, Rheumatoid Arthritis Factor Ra Latex Turbid, ANA Direct, Uric acid, AST/ALT/ Sed Rate West, Lyme Disease, Hemoglobin Alc, Acetylchol Recap Bind Ab w/Rfx, AChR Modulating Ab, GGT, Zinc, Plasma or serum, EBV acute infect, Iron & tibc, Comp. Metabol. Panel, Glom Filtrate Rate, Hepatic Fxn Panel, Lipid Panel, HSV 1 & 2-Spec. Ab, IgG and HSV II IgG, RPR, Vitamin b12, Serum, an EMG of upper extremities, a test for myelitis, an MRI brain & MRI cerv. Spine, spine X-ray, stress test Of all this the only thing found was mild bilateral carpal tunnel & ulnar neuritis and a slightly elevate CPK (250) since I train w/weights & do cardio every day. I still feel tingling, cramping, numbness, pain, coldness (neuropathies) sporadically in all of my extremities. My hands feel stiff & achy/“slow”. I have normal BP. Is it possible that we are missing something? Its not a vitamin deficiency, nor diabetes, not lupus, not MS. Could it be directly related to my IBD? I am so confused. It is all I think about anymore. Please Help!

[patsy10]

I have all those neuro symptoms too and more.  I've seen 6 neurologists, had numerous tests.  All have come back normal.  I've never gotten an answer.  The reason I mention lyme is because I had 3 bullseye rashes and I've never been the same since.  I have all the symptoms and nobody has been able to find any other cause for them.  Too long of a story to write down but I have improved by taking antibiotics.  I have never tested positive for it on a blood test.  I also was an exercise enthusiast like you.  I still exercise but can't do nearly what I did before this all started.

[VRock]

The Lyme test was Lyme IgG/IgM Ab
I had this test run 3 different times. I do not live in a lyme endemic area. Infact I dont even know anyone with Lyme Disease. But I will ook into it further. Thanks

[patsy10]

I know you were tested for lyme disease but testing is  unreliable.  If it was the ELISA then it's completely worthless.  Most mainstream doctors use this test and when it's negative they say no lyme.  Some people have severe lyme and are bedridden and still have negative lyme tests.  I'm not saying it's lyme but I would suggest you do some research on it.  Do you live in a lyme endemic area?