Neurology Expert Forum
Still looking for what’s actually wrong…
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This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.

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Still looking for what’s actually wrong…

45 yr F, 110lbs. Main complaint extreme physical/mental fatigue (sometimes responds to stimulants). Excessive REM (45% of sleep), upper back pain, numbness/burning/pain in legs/arms, tach, irreg heartbeat, PVC’s.
Tests are mostly normal except: Multiple abnormal sleep studies – normally I’m out < 4 min, but I couldn't sleep in the study centers – during the brief times I did sleep I had tons of micro-arousals, 2 abnormal EEG’s (slowing in left temporal lobe w/ sharp forms) – MRI normal, positive test for peripheral autonomic neuropathy (tilt table/sweat test). Positive anti-smooth muscle antibodies – no idea how that’s related to anything.

Not lack of deep sleep – I actually get over an hour per night, now neurologist thinks everything is related to my low BP 80’s or 90’s /60’s. I’ve tried various meds and usually have bad side effects - genetic test confirmed some C P450 enzyme “issues”. Ruled out all the typical stuff thyroid, lupus, chronic fatigue, psychosomatic illness, etc.

For awhile we thought it might be a potassium ion channelopathy – I sometimes feel significantly better after prolonged (4+hrs) of mild exercise like hiking – shorter periods of exercise have no positive effect. I had one positive test for neuronal voltage-gated potassium channel antibodies, but the two follow-up retests were negative.
I’m very sensitive to stimulants but they only “work” sometimes. I can feel mentally/physically tired with no motivation, take 2.5 mg of Ritalin and it’s like flipping a switch and I’m “on” – this happens rarely. If I’m desperate and need to get something done,  I can end up taking 2+ doses of Ritalin along with Nuvigil followed by caffeine  often with no effect on energy/alertness. I’m a slow caffeine metabolizer and after a small amount (<1/2 cup coffee) for several days I get cardiac issues and the “heebie-jeebies”.

I need some out of the box ideas and suggestions – I want my life back…
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Avatar_dr_m_tn
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

Your history is complicated. I am not sure what your main question/symptom is. I am most interested in the cause of your neuropathy since this might be the underlying source of your history. Have you had a thorough neuropathy workup including the basics such as oral glucose tolerance testing, B12, TSH, and serum monoclonal proteins? If these are normal or negative, more specialized testing can be performed looking at genetic causes of neuropathy, heavy metals, additional nutritional causes, connective tissue/rheumatological causes, etc.

I would suggest you follow up with a neuromuscular neurology department at a large academic university. Additionally, you may wish to repeat the sleep study if it was inadequate.  

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

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