Confusing parathesia symptoms - need diagnosis

    I am a 67 year old male I am having various sensations (tingling, burning, pin pricks) on ankles, arms, back and head. Also changes in voice,  very strong sense of smell, reduced taste, and hearing.  It is mild in AM and gets worse in PM-usually no problem while sleeping.  Strangely, when I doze off  in a chair, it starts up and gets worse quickly and does not quit until in bed at night.
    Initially  I experienced ptosis in left eye, stiffening of tongue after eating, talking that affected  my speech which have all  improved lately. The other sensations have been worse on my left side and on left side of face-also some slight changes in vision,  blurred vision in one eye at times, burning itching eyes all the time. Symptoms are worse in the late afternoon and stop when I go to sleep- usually no problem all night.
    This all started after a skin infection last year and being hospitalized for low blood sodium and atrial fibrillation.  I think I may have picked up a virus in the hospital or some form of Herpes has raised it’s ugly head - I've had Herpes II for 30 years and paroxysmal Afib for 25 years. My Dad had serious shingles and I see new little red spots on my arms, legs and back which I've read can be related to H. Zoster.
    My neurologist gave me an  brain MRI, urine and blood tests and an EMG test all negative for more serious disorders but only a Myasthenia Gravis panel was positive - he said it was probably a false positive, so he repeated it several months later and was still positive but lower readings. He sent me to the medical school for a small fiber EMG and it was borderline. He still thinks it is not Myasthenia Gravis because I lack extreme weakness in arms and legs and my eyes seem much better now. His only diagnosis so far is some sort of neuropathy/parathesia, but hasn’t nailed it down. He mentioned a spinal tap and a possible biopsy if the spinal fluid is negative. He sent me to a rheumatologist and  found  very low Vitamin D, all other tests were negative, even immune systems disorders and infection. The vitamin D is now normal, but could have been part of the problem initially along with the skin infection and possible hospital infection.
     I have read some comment from a patient (a nurse) on Medhelp.com (excellent website) and my symptoms match some of hers and I therefore think I might have some sort of immune mediated neuropathy, possibly small fiber, since the small fiber EMG showed borderline. She mentioned a battery of viral titers at Cleveland Clinic to determine the microbe which caused her problem and design a therapy. I teach Nursing Chemistry so I know enough to be dangerous on the internet, but I trust this site more than others.
    I take Toprol XL (beta blocker), 25 mg after lunch, Valtrex, 500 mg, and Cardizem ER, 120 mg, (calcium channel blocker) in the morning.  Toprol can cause neuropathies so that may be the part of the problem.

Question:   For members of forum at Cleveland Clinic.

• Does anybody else in the forum have these symptoms and test results and have a definite diagnosis? If so, please respond and let me know how, where and which doctor  gave you your diagnosis.

• If so what treatments/prescriptions/supplements are you receiving? Is it helping?

• Is it getting worse with time?

[basmamo]

i think it may be one of aminoglycosides side effect. it is rare but if u use AG.then consult your doctor.

[ukguy58]

Hi Sir

I am 58 in Uk and got kinda similar skin prickling but not the other symptoms you have.

Had a zillion tests all neg far. It seems to me this site is excellent cos we can share experiences / diagnostics etc.and discount a lot of 'smoke and mirrors' from the medics.

Sadly, I think lots of us wont be helped by the medics and it takes ages to go thru all the testing procedures. It takes a very specialised Dr who has a good case history knowledge of neurology and general medicine and ESPECIALLY one who will do the research in the medical literature and with their peers - which i dont think they often do.

It may even take a multi-disciplinary team.

please conatct me if this works slaterfrncAThotmailDOTcom

john