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Non-diabetic neuropathy
Before I tell my story, let me state that I was a daily wine drinker for several years. My neuropathy started in my feet in 2017. It did not progress beyond my feet for several years. I stopped drinking in 2023, and at that point, my neuropathy was still confined to my feet. My doctor said that alcohol cessation should stop the progression of the neuropathy. I also started on a weight loss drug at that time. I weighed 157 lbs and I am 5’2”. The medicine was a success. I lost 54 lbs in five months, but also lost a large amount of muscle. I continued on the medication on the advice of my doctor. She said I would need to stay on the meds in order to maintain weight loss. Long story short, I was not hungry and from March, 2023 until February, 2024, I ate nothing but fruit, popcorn and salads. I ate very little protein during that year. Anyway, about six weeks after starting the medication, I noticed my knees felt weak. I spoke to my GP about it, and she said it was not associated with the medication. However, I became weaker and my neuropathy went into hyperdrive. I finally took myself off the medication in February, 2024, started eating a normal diet. I was able to see a neurologist at Vanderbilt and she said my neuropathy was probably caused by several factors, one being alcohol but also rapid weight loss, nutritional deficiencies and possibly idiopathic. That was in October. She also said my neuropathy should slow or cease progression with the modifications I made. However, my neuropathy is getting worse. I now have numbness all the way up my thighs, and, in the last two months, numbness in my rear. I am also developing a twitch on the left side of my face. I feel so discouraged and alone. It feels good to have a group of people that understand.
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Are you seeing a neuromuscular neurologist? I was diagnosed with autoimmune severe axonal sensorimotor peripheral polyneuropathy, small fiber neuropathy, cardiac autonomic neuropathy yes it moves into your organs along with dysautonomia. My rheumatologist finally diagnosed me with SLE basically lupus and sjogrens. My sjogrens was diagnosed by an ENT taking a biopsy out of the glands in my mouth and the eye doctor did two test and discovered I had scratched corneas. The glands out of my mouth were enlarged and had the markers for sjogrens but my blood work showed negative. I had mine since 2002 and just diagnosed a few months ago. All my autoimmune markers have been high since 2002. My feet now drag and I can’t lift them.
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3 Reactions@missbutterfly2be When I went to Mayo in 2020, I did bring up the subject thinking they would obviously have a neuromuscular neurologist on staff. After several days of testing, I was told my symptoms did not indicate the need to see a neuromuscular neurologist. In 2023, I did bring it up again with my neurologist who I see once a year and she stated that I do now show any indications for a referral to a neuromuscular neurologist. Since 2020, my symptoms have not changed that much other than balance is worse than 5 years ago. Numbness is still below the knees. I appreciate your thoughts on this and perhaps your posting will help others. Also, sorry to hear what is going on with your feet. Please stay safe. Ed
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1 ReactionWhat did the vascular test show?
He advised me it was negative. I requested a report and did not receive one. I'm glad you made me look.
I have just now requested a copy of the test.
Have you been checked for Charcot Marie Tooth (CMT)? There are many varieties of CMT. Your symptoms are very similar to mine. I’ve been diagnosed with CMT1B, but if you do have CMT, it could easily be another type.
@grandmacsa Yes, I had a CMT test done at University of PA Hospital in 2019 and I was notified 3 weeks later that the next was negative, the neurologist saw my symptoms and thought the test was worth pursuing. Right now, relating to your PN, are your largest problems numbness and poor balance?
Yes, those are my main symptoms. I also have some hearing loss which affects about 28% of people with CMT 1B. Was the CMT testing you had done genetic testing?
Yes, the CMT I had was for genetic testing. My grandmother had hammer toes on both feet and other issues as well. I went there specifically for the CMT test. My hearing seems to be OK so far.
This was the place my blood was sent to have genetic testing done and where it was determined I have late onset CMT1B, as do several of my relatives, including my dad. It’s an inherited condition. Did you receive the report from there? https://www.invitae.com/us/providers/test-catalog/test-03201
I’m sure there are other companies that do testing. This one was very thorough. There’re probably many other conditions that cause the same symptoms as CMT. I sure hope you can find an answer.
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1 ReactionI did not get a report from Univ of PA possibly because my results were negative. I spent 4 days at Mayo in MN and they could not come up with an answer. I also went to Johns Hopkins in Baltimore, they could not come up with a cause. None of my relatives have PN. Over the years it was mildly suggested by various neurologists that my PN could possibly be genetic related, could be related to back issues, could be caused by toxins or even medications. So, the word idiopathic became the label. After all, we have to call it something.
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