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September 2023: The latest impression from MRI of Neck & Nerve Studies shows generalized acquired sensory polyneuropathy, demyelinating. C5-6 to a lesser extent C607 radiculopathy on the right. Clinical correlation is avised.
I was diagnosed in 2019 after taking the Shingrix Vaccine with the 2nd dose bringing on the onset of all of this. Here it is 2023 and I am worse. No one is sending me to anyone to get help. What do I do? All that was said to me was I need to see a Spine Surgeon, possibly injections, therapy or surgery, but no one referred to anyone. I can't stand the pain any longer. Any input would be appreciatated.
Replies to "September 2023: The latest impression from MRI of Neck & Nerve Studies shows generalized acquired sensory..."
Hello @dablues. I was able to find another existing discussion on the topic of polyneuropathy so you will notice I have moved your post here:
- Polyneuropathy: https://connect.mayoclinic.org/discussion/polyneuropathy-2/
You mention not having been referred to a spine surgeon. Have you made the request to your doctor for a referral and not been granted one?
I had been diagnosed with SFN and polyneuropathy in 2018 which had been getting a bit worse over time. A single Shingrix vaccine early this year triggered some weird cardio, blood pressure and additional neurological/visual problems, but not much help at the time from the ER, my primary care or neuro docs. I recently recalled the black box warning about Guillain-Barre' syndrome and mentioned this to my primary care doctor 7 months after the shot. They mentioned that perhaps I should have seen an immunologist. Why this wasn't recommended after my emergency room visit, I don't know. Though things now seem to have settled down blood pressure wise, but I am now hesitant to get ANY vaccine, not wanting to go down this road again - especially without timely medical assistance.
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I am not sure where you are located but it took 12 years to diagnose my CIDP. The important parts about this are the "demyelinating" and "polyneurophy", aspects which match my issues. So, just as an FYI because I have no background, but I have been receiving infusions every three weeks using Privigin, (immunoglobulin). I have had a couple of reactions but I am feeling much better. Perhaps you could at least ask your docs about this. ?