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Undiagnosed neuropathy and weakness

Posted by David Rich @davidcrich10, Jun 23 4:32pm

I have weakness from the waist down, numbness, bladder issues (require a catheter), and constipation. Because of the weakness I now need to wheelchair. MRIs have shown no lesions. I had been diagnosed with neurosarcoidosis but remicade didn’t help and now that diagnosis is not thought to be the answer. There is now no diagnosis, but taking acemtra infusions. Any insights?

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David Rich | @davidcrich10 | Jul 3 12:01pm
In reply to @arcuri24 "I have never been near any COVID vaccines but ended up with neuropathy--may be due to..." + (show)
Profile picture for arcuri24 @arcuri24

I have never been near any COVID vaccines but ended up with neuropathy--may be due to some medicine I took for sinus or perhaps due to the infection itself. A salesman at my local appliance store has idiopathic neuropathy--he had long COVID plus took vaccines for it. He has severe balance issues and tried immunoglobulin therapy but to no avail. Perhaps you can add some vitamins to your regimen as well as doing physical therapy. And, yes, not all neurologists are the same so we must keep on the lookout for the sage ones!

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Thank you! Yes I take a lot of B-12 and D

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David Rich | @davidcrich10 | Jul 3 12:03pm
In reply to @moorethrpy "Thanks for taking the time to reply. Such a mysterious and dreadful condition. I am taking..." + (show)
Profile picture for moorethrpy @moorethrpy

Thanks for taking the time to reply. Such a mysterious and dreadful condition. I am taking EB-N6, a prescribed vitamin B formula that was developed for diabetic neuropathy. It insures the correct dosages of Vit B 6 and 12. Prescribed by my podiatrist who sees a lot of neuropathy in his practice. I take no other B formulas or anything containing B. I also take HMB+D3...for muscle/bone. That's it. Oh one more at night. Magnesium Glycinate to help with severe foot cramping. I stopped two meds; atorvastatin and hydroxychloroquine...at the advice of a really great neurologist I saw at Columbia University, NY. I feel more stable now..of course you never get back feeling. I only have sensory loss; no motor and is mostly in my lower legs and feet. Before, I just felt a constant progression upward. Getting another EMG at Columbia in August. We all need to keep each other informed and keep advocating for research and treatment. If you have CDIP (large axon...neuropathy which I don't have, there is a new very effective treatment; Hytrullo by Vygart. There are very specific criteria for this diagnosis which I don't meet but it is also much more debilitating than our kind. Stay in touch.

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Thank you! Will do!

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arcuri24 | @arcuri24 | Jul 4 12:31pm
In reply to @davidcrich10 "Thank you! Yes I take a lot of B-12 and D" + (show)
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Thank you! Yes I take a lot of B-12 and D

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David Rich, I, too, take B-12 but was told by my gastro doctor to stop D for several months as my blood test showed I had reached a toxic level. He said I could resume taking it after several months. For now, I feel there is no need for it as there is plenty of sunshine here and I walk my dog several times per day so that is providing natural D to me. Plus, I am drinking milk out of a glass bottle and let go of gluten and most sugar. I am in the undecided column about seeing my neurologist next week--it could mean more testing or prescribing of drugs .It could mean more stress. The pt is helping my body with cardio and strengthening and I am fortunate in that I have no pain--mainly just tingling (annoying). The Clinic digest helps me to realize that I am not alone and that folks are looking out for each other,

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David Rich | @davidcrich10 | Jul 4 1:45pm
In reply to @arcuri24 "David Rich, I, too, take B-12 but was told by my gastro doctor to stop D..." + (show)
Profile picture for arcuri24 @arcuri24

David Rich, I, too, take B-12 but was told by my gastro doctor to stop D for several months as my blood test showed I had reached a toxic level. He said I could resume taking it after several months. For now, I feel there is no need for it as there is plenty of sunshine here and I walk my dog several times per day so that is providing natural D to me. Plus, I am drinking milk out of a glass bottle and let go of gluten and most sugar. I am in the undecided column about seeing my neurologist next week--it could mean more testing or prescribing of drugs .It could mean more stress. The pt is helping my body with cardio and strengthening and I am fortunate in that I have no pain--mainly just tingling (annoying). The Clinic digest helps me to realize that I am not alone and that folks are looking out for each other,

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Great! Thanks for sharing. Sounds like you are doing all the right things. I unfortunately cannot walk the dog anymore because I am in a wheelchair, so vitamin d supplements are still the order of the day.

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arcuri24 | @arcuri24 | Jul 4 4:24pm

I am hoping that your dog is still by your side. He/she could be part of your healing therapy. Dogs are able to give us so much love and care. As for D, its one powerful vitamin that does many wonderful things for our bodies. Come autumn, I will resume taking it as the sun will be more scarce in my neck of the Woods. I am also hoping that you will heal and be able to rise from the wheelchair. By the way, I, too, have a dog and she is wonderful company.

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arcuri24 | @arcuri24 | Jul 4 4:32pm
In reply to @davidcrich10 "Thank you! Yes I take a lot of B-12 and D" + (show)
Profile picture for David Rich @davidcrich10

Thank you! Yes I take a lot of B-12 and D

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By the way, I just realized that I had mentioned my dog in my initial posting because it allowed me to get Vitamin D exposure.

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