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Demylinating Sensorimotor Neuropathy vs./ or and Polyradiculopathy
Autoimmune Diseases | Last Active: Mar 5 10:29am | Replies (29)Comment receiving replies
Yikes...I went to the article and my eyes crossed! My overriding question is: What can we expect in the future due to the demyelination? All I get from my neurologist are vague non answers which makes me conclude that they don't know for sure and all the tests that they perform are being done to track our decline. Ugh. Anyone out there get answers about what to expect? I'd love to hear from you.
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I am getting updated testing by a new neurologist due to CNS/PNS decline and nerve dysfunction impacting my mobility, sensory systems, and autonomic nervous system. My thoughts are they really do not know or they can’t do much other than treat symptoms unsuccessfully with strong medications that cause terrible side effects. I do think that toxins in our environment, products and food supply are damaging our brain/spinal cord, nervous systems, brain chemistry and quality of life.
@minfromtexas There is so much out there on sensorymotor polyneuropathy but nothing specific about demyelination. I did find this, though.
https://medlineplus.gov/ency/article/000750.htm#:~:text=Sensorimotor%20polyneuropathy%20is%20a%20bodywide,nerve%20coverings%20(myelin%20sheath).
I, too, have a demyelination disease. It’s kept in check with prednisone and biologic infusions.
My doctor doesn’t really know what’s going to happen either!
So I guess we keep on keeping on!
Nope, same here, all suggestions regarding meds,I’ve already done with no positive results.
Suggestions made for new med, very expensive and not approved by my Rx plan.
Possibly new med coming out this year for CIDP, which is an infusion, and I’ll get a call when it’s available.
So right now I’m at an impasse, and can’t even get an appt at Mayo Clinic in Arizona.
Was told no new appts available in neurology dept.
So now what?
That was my last hope for answers- was told to try back in several months,to see if there are appts available.
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Hi @minfromtexas, My guess for the vague answers is they really don't have the answer. Here are a couple of references that are hopefully a little easier to understand on demyelination.
--- Demyelinating disease: What can you do about it?: https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/expert-answers/demyelinating-disease/faq-20058521
--- Demyelination: What Is It and Why Does It Happen?: https://www.healthline.com/health/multiple-sclerosis/demyelination.
My own personal opinion on progression is that it's better for our overall health to take it day by day, eat healthier and keep moving doing what you find brings you joy.