Neuropathy questions...

Did your neurologist do a brain MRI? That seems to be the gold standard for making a diagnosis of MS. I will say that peripheral neuropathy is a very, very sensory experience. For example, I used an ice pack on my aching back and the tingling--which I thought had been gone--came back into my feet. Seems PN does not like very cold or very hot. You may notice that certain shoes or socks can cause PN to be more bothersome. It is truly a challenging disease to manage and lots of it is by trial and error as most doctors do not want to offer practical--day to day living-kind of advice. Wishing you the best!

I don’t know what internal inflation is?? But like the previous commenter stated, PN is all about the sensory experiences. I get all sorts of weird sensations that come and go - some sporadically, like a feeling there’s a spider or bugs crawling on my leg to tingling, shooting zaps, vibrating, numbness, etc. My sensations seem to be more pronounced when I’m more tired or stressed.

I’ve had PN for decades- diagnosed as severe idiopathic (non-diabetic) sensory motor Axonal Polyneuropathy, by nerve conduction studies and many other tests. My new neurologist confirmed that the nerve damage originated by the severe Epstein Barr virus infection I got many years ago.

Those random sharp electrical shocks are what sent me to see my first neurosurgeon, and his diagnosis was a ruptured disc in my neck. They're never a good thing IMO. I've had 2 separate disc fusion procedures at the C5-C6 and C7-T1 levels since then, and the random shocks were 95% better. I still have the occasional one, hopefully it's not a sign of something going bad.

I went to Mayo in MN in 2020 and was diagnosed with idiopathic sensory motor axonal PN. I am curious, what test did your neuro doc do to determine the nerve damage was a result of Epstein Barr? Interesting.

I became disabled with ME/CFS (Chronic Fatigue Syndrome) following an acute Epstein Barr Virus infection almost 40 years ago. The EBV virus initially attacked my nervous system and I was very sick for years. Still have ME/CFS. But from the first day my whole body experienced vibrating sensations, along with many other symptoms that affected every part of my body. Ever since then nerves in my legs have never stopped buzzing - to one degree or another. Then about 20 years ago it started slowly progressing along with numbness, stocking -glove sensations, and muscle weakness. Later I started losing balance and falling.

Although my original neurologist who did the nerve conduction studies, ct scan and blood tests, etc, dx’d it as Idiopathic, my new neurologist is a young smart guy from Johns Hopkins knows a lot about EBV and post viral syndromes. He confirmed what I already knew having done my own research. No additional test was done but my case was pretty obvious. The EBV virus can cause nerve damage and not all EBV infections present as mononucleosis or with upper respiratory symptoms, My new neurologist also believes the initial virus triggered an autoimmune response in my nervous system. Plus I’ve always had speckled pattern ANA’s autoimmune antibodies.

For more info re EBV and nerve damage:
https://www.clrn.org/can-epstein-barr-virus-cause-nerve-damage/

After being diagnosed with trigeminal neuralgia I read that all our nerves are coated with an insulating fat, myelin. It is continually maintained with vitamin B12. Only obtained by eating plenty of animal proteins.
Sadly for many, alcohol reduces absorption of B12.
I am now symptom free and taking 20 micrograms METHYLCOBALAMIN every few days. We need no less than 4.5 micrograms daily. Grazing animals get enough because foliage is coated with soil dust. Cabalamin (B12) is made in soil by COBALT loving bacteria. Our vegetables are washed. CABA stands for COBALT. Get it!
Good luck , James NZ.

I am extremely sorry to hear about your disability and all that you have gone through in the past 40 years. Thank you for responding and the link.

How kind of you. You’re welcome. I hope you can get some relief for your PN too.

Hello,
So sorry about what you’re going through. I can definitely sympathize since I have been diagnosed this year and now from the soles of my feet to above the ankles feel like they’re in absolute hell continuously and during the night things get worse. Electrical zaps shoot from somewhere and attack various spots from the knees down and keep hammering that spot.
Unfortunately, especially for idiopathic peripheral neuropathy, even the medical community has a very hard time dealing with since causes are unknown; therefore, it’s very difficult to find the right treatment for an unknown cause.
I hope you have a good neurologist specializing in neuropathy to see if you can get some relief somehow.
I wish you the best.
Take care and have a serene weekend,
gus

John, do pass my letter on.