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Worth visiting Mayo Clinic for evaluation of idiopathic neuropathy?

Posted by rybren @rybren, 3 days ago

Anyone been to Mayo for IPN? Diagnosed 2021 post Covid vaccines with bilateral Idiopathic PN. Had EMG, ultra sounds, anti body testing, all types of diagnostic testing has been completed by PPC and Neurologist. On Gabapentin 3x a day 300 mg. Try everything local MD’s could muster. Now I am on the not much else we can do for you- good luck train. Love to hear of others made this leap. 5-7 day commitment in MN.
Thanks if you have input.

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771 | @771 | 10 hours ago

i was diagnosed in 2002 with small fiber idiopathic periphal neuropathy at the Ohio State University. I woke up one morning and felt like i had a golf ball under each foot. I was 52 then they put me on several potent drugs which i couldnt tolerate so i stopped taking them because all they did was knock me out and turn me into a zombie. at this time I had a wife and 3 children and i had to go to work. The first 10 years i had numbness and burning in my feet and pain that was hard to explain. At 12 years started getting worse and was hard to walk any distance. went back to OSU they did nerve conduction test and told me I was getting worse and would be in a wheel chair soon. Didnt need them to tell me i was getting worse i new that. now it was progressing into my arms and hands and lost my balance almost completly i cant feel my feet or legs from knees down and its continuing into my arms and hads. I am in pain 24 hours a day every day 6months ago went and got another nerve conduction test and my nerves are dead in my legs have atrophy my feet are bones with skin on them< Doctor told me i do 5 to 7 nerve conduction test a week and i have never seen one this bad. I walk with a cane because i forbid to go in wheel chair have lost balance cant walk on carpet cant go in gras. i have feel 2 times and am scared that i am going to break something if i fall again i was in grass when it happened. I dont think i will ever be able to do anything agai just stay in house and go on my deck. spent thoud
sands of Dollars with all the scams saying i
they can help with neuropathy none worked. last one Stem Cell injections cost me 16 kdid nothing. Im done Doctors dont help . I take gabapentin which has affwcted my memory cant stand it but does take edge of. GOD BLESS ALL OF YOU FIGHTING WITH THIS DISEASE I WISH YOU THE BEST.

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patriciaschulz1950 | @patriciaschulz1950 | 6 hours ago
In reply to @rybren "@patriciaschulz1950 I have been taking R Alpha Lipoc for a year. Doubt you will feel any..." + (show)
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@patriciaschulz1950 I have been taking R Alpha Lipoc for a year. Doubt you will feel any immediate record but like you I have read it is necessary for the health of nerves. For me dose doesn’t matter. The R I read is important. Amazon has these supplements. Why not try if it is highly recommended by so many. Who knows may slow down what ails us all.

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@rybren I order Magnesium glycinate and also R Alpoic Acid. We have a Mayo in Jacksonville, but like you said all expenses are out of pocket. Medicare and Supplemental covers zero costs for anything that I have tried. I did PT several times, cost was $30 per visit, however, after several years & $$$ I stopped. I have an exercise& stretch plan down solid. I am grateful for this forum and also Foundation of Peripheral Neuropathy…I am thinking joining a local chronic pain group.

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johnjp | @johnjp | 5 hours ago
In reply to @johnbishop "Hello @johnjp, I would like to add my welcome along with @hookedongolf2004, @patriciaschulz1950 and others. I..." + (show)
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Hello @johnjp, I would like to add my welcome along with @hookedongolf2004, @patriciaschulz1950 and others. I idiopathic small fiber peripheral neuropathy and always wondered what the cause is. For me I think mine is possible related to the metabolic syndrome since I fit in the traits and have been labelled by all of my PCPs over the years as being pre-diabetic and not knowing what that really means health wise.

I too was told I need to go on statins but declined and decided to try and lower my cholesterol numbers with some lifestyle changes - eating healthier, exercising more, losing weight and cutting back on all of the sugar I was taking in. I only did this because I learned that statins indeed have a connection with neuropathy and I was already dealing with neuropathy and didn't want it to get worse. There are lots of research papers on the connection: https://scholar.google.com/scholar.

There are many different causes of neuropathy which I'm guessing is why it is so hard to pin down a cause for many of us. Neuropathy Commons has a good list if you want to learn more about the different causes - https://neuropathycommons.org/neuropathy/causes-neuropathy.

I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. Probably the best thing you can do is to continue learning as much as you can about the condition and the different treatments available that may provide some relief.

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@johnbishop Thanks John. I'm new to this message board, but I see you are a generous contributor. I appreciate your thoughts and your giving back to the community.

I'll check out the links you had provided. I have pursued a bunch of possible causes. Had you seen the pneumonic "dang therapist"? There are others, but in this case, each letter starts a word which is a possible cause: D= diabetes, A = Alcohol, N= nutritional, G = Guillain Barre, etc...

I do not accept this should be so hard for science today. If we wanted to solve this, we could. That's my story and I'm sticking to it!

Thoughts and prayers go out to us all. I'm so sorry you are having to endure this.
Good day to all,
JP

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edva1943 | @edva1943 | 4 hours ago

In my case, going to Mayo/Rochester for a full workup and evaluation was definitely worth it. My symptoms first appeared almost 40 years ago (around 1987), but it wasn't until the early 2000s that my PCP referred me to a local neurologist, who in turned referred me to Johns Hopkins, I spent about 15 years going to Hopkins and another teaching school, with too many MRIs to count, plus many NCT and EMGs, and two nerve biopsies. The best they could do was to call it ideopathic. Finally, in 2019 I went to Mayo for a four-day workup. Their tentative diagnosis was CIDP, and I was also told that if treatment didn't work, I'd be in a wheelchair in five years. After I responded to IVIG and displayed moderate improvement, they were 99% certain of the diagnosis. I'm now 83, and have continued to stabilize, with very gradual improvement and reduced falls. I walk with one or two assistive devices -- but I'm still on my feet. Every case is different, but in my case it was certainly worth the trip to Mayo.

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rybren | @rybren | 3 hours ago
In reply to @edva1943 "In my case, going to Mayo/Rochester for a full workup and evaluation was definitely worth it...." + (show)
Profile picture for edva1943 @edva1943

In my case, going to Mayo/Rochester for a full workup and evaluation was definitely worth it. My symptoms first appeared almost 40 years ago (around 1987), but it wasn't until the early 2000s that my PCP referred me to a local neurologist, who in turned referred me to Johns Hopkins, I spent about 15 years going to Hopkins and another teaching school, with too many MRIs to count, plus many NCT and EMGs, and two nerve biopsies. The best they could do was to call it ideopathic. Finally, in 2019 I went to Mayo for a four-day workup. Their tentative diagnosis was CIDP, and I was also told that if treatment didn't work, I'd be in a wheelchair in five years. After I responded to IVIG and displayed moderate improvement, they were 99% certain of the diagnosis. I'm now 83, and have continued to stabilize, with very gradual improvement and reduced falls. I walk with one or two assistive devices -- but I'm still on my feet. Every case is different, but in my case it was certainly worth the trip to Mayo.

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@edva1943 thanks for your lengthy response. It is very much appreciated.

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megidigo | @megidigo | 1 hour ago
In reply to @patriciaschulz1950 "I have been wondering the same thing. After 20 years, I don’t want to give up,..." + (show)
Profile picture for patriciaschulz1950 @patriciaschulz1950

I have been wondering the same thing. After 20 years, I don’t want to give up, however the pain seems to arrive earlier and earlier. I am about to “start” fresh again = after removing all pills, doctor prescribed and supplements for three months. There was no difference eliminating drugs from my daily routine , and my cholesterol was elevated without a statin. I truly was hoping the statin was the culprit. So, just started, statin, 1 metformin (although not diabetic) and magnesium oil spray at night, along with a magnesium glycinate supplement. I have just ordered an Alpha Lipoc supplement too. I think I should only add one at a time to determine if any relief from magnesium. I have only deteriorated the last four years, fighting the pain, the mobility issues, and mental depression. I appreciate this forum group and Foundation for Peripheral Neuropathy. I wish we had a support group in SW Florida, as Jacksonville is a 5-6 hour drive. I am going to contact our hospital neurology group and “start” again, and be open to suggestions that I have not tried. The chronic pain is mentally wearing me down… So question is what - should I try 1 supplement at a time? Add Alpha Lipoc now and what dosage should I start with?

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@patriciaschulz1950 And anyone else

The Western Neuropathy Association has online support meetings on Zoom if you want to talk with people live and on camera. You dont have to turn your camera on or even speak if you dont want to.

You can sign up for the meetings on their site
https://www.pnhelp.org/

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patriciaschulz1950 | @patriciaschulz1950 | 1 hour ago
In reply to @megidigo "@patriciaschulz1950 And anyone else The Western Neuropathy Association has online support meetings on Zoom if you..." + (show)
Profile picture for megidigo @megidigo

@patriciaschulz1950 And anyone else

The Western Neuropathy Association has online support meetings on Zoom if you want to talk with people live and on camera. You dont have to turn your camera on or even speak if you dont want to.

You can sign up for the meetings on their site
https://www.pnhelp.org/

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@megidigo thank you so much

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