Hello,

I should preface this by saying I work in healthcare and even doing that still doesnt get you much extra help. Most people with cases I read on here have followed a similar course of people not knowing what to do but this is my case:

A few months ago I developed Shingles on my left inner groin and penis and developed neuropathy in left calf during treatment with Valtrex got lesions on my buttcrack and developed neuropathy in my right calf (which I know crossing midline is uncommmon). But after I finished Valtrex I felt better for about three weeks or so. At that time, I suddenly developed neuropathy in my right pinky and from there it spread up my arm back to my legs and to my other arm, face (primarily trigeminal nerve area), and tongue. After the numbness had spread to my face (not tongue yet tongue was last) I developed fasiculations in my eyes, legs, and arms. I also developed tightness (or perception of) in my right calf. That has since spread to other calf, quads, and hamstrings. I have no clinical weakness (I work out and have not developed weakness). The fasiculations have improved but not resolved. I also have burning in my upper legs and my right foot is numb. My NCS showed diminished on the left leg (primary side of shingles) but responses to both legs per neuro were good. I have minor ulnar neuropathy in RUE where this all started. He stated my anatomy could have been reason for that but I had never had ulnar neuropathy before. He deferred EMG. My MRI of Brain, C, and T spine were negative. All labs were negative other than Shingles, my IgG after treatment >4000 higher than scale could read but no one could tell me what that means.

I have read some of these forums which has been very helpful but does anyone have any insight on my case or thoughts on what might be happening? I feel as someone who had no medical problems prior to this (Im only 30) that this somehow related to Shingles but I dont know. Sorry for long post but hoping someone could help me.

My labs I have had done are HSV 1 and 2 (my IgM for that was mildly positive when my VZV was and has remained slightly positive months later but my IgG has remained negative so figured not accurate, my IgG for VZV (shingles) still very high 3000s, VZV IgM negative, B12, Folate, B1, B2, B3 normal. Aldosase, CPK, CRP, ANA, ESR, Rheumatoid, Lupus test, Sjogren (SSA and SSB), HIV, thyroid, chemistries, blood counts, cryoglobulins, immunoglobulins all negative or within normal limits.

I've started to have some vision changes as well. Curious if anyone had any thoughts on my case. Would really appreciate any help.

Sorry to hear your story...sounds miserable. I wish I had some great advice to pass on, but all I can tell you is what my first neurologist said to me (paraphrasing): "We have a long way to go with understanding how viruses impact our nervous system."

In my case, he had ruled out all the usual suspects and thought a virus might be responsible....Herpes Zoster, Epstein-Barr, etc... His only suggestion was to see what I would consider a "rogue" doctor friend of his who trying to treat patients with unusual neuro symptoms by prodding their immune system to respond. He couldn't provide details of how. This doctor didn't accept insurance and appointments were by cancellation only . And given he was 80 miles away to boot, I never took that path.

BTW, my symptoms started about three years after getting shingles at age 48.

From all I've read about Shingles, it comes on from added stress issues. I've learned to keep calm and work with supplements like:

Inositol
Gaba
L Theaine

Which are all calmers and also do meditation on regular basis, short sessions are fine but do them....

I know many take the shingles vaccine, I DO NOT. I'm not big on vaccines unless really necessary. Work on my immune system and believe the Grape Seed Extract I've been taking for 25 yrs soon is keeping me in good shape. It contains anti viral, anti bacterial, anti fungal properties. I'm 81.

Hi Duncan!

Sorry for your situation. Have you improved since you posted?

I have somewhat a similar story.

Had shingles in February 2019, it sorted out after 3 weeks or so. But, 3 months after that i started to develop numbness in both feets, and constant fasciculications in both calves. All symptoms still persists, and I have added tingling in my face and sometimes hands. My calves are now also feeling stiff (on their way to start cramping...).

Done all bloodwork, MRI of brain/spine, lumbar puncture, EMG, EnEG. All negative except that the EMG identified the fasciculications in the calves (no surprise). So, no diagnos as of yet.

Would be interesting to hear how things are with you and if the doctors have come to any conclusion?

Btw I am 35 yrs old and all healthy before this nightmare started...

Br John