Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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@dongoldwater

Thanks for the info. No I have not heard of anything my doctor (an internist) thinks I am making it all up so I am now looking on my own. Do you have any though doctors I could see in the phx metro area (my surgeon died 10 yrs ago). I am thinking of I should have an MRI is this a waste of $?

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In my quest for answers, I wanted an MRI just like everyone else seemed to get as they were trying to be diagnosed. My first Neurologist (I lived in a different state then) wanted to do one, but I had an implanted defibrillator with metal that prohibited one. So last year, after my ICD finally died after an extraordinary battery life, I asked for new wiring to go with the replacement so it could be up to modern standards and be MRI friendly.
However, I was with a different Neurologist then and he wouldn’t do it, said that it wouldn’t tell us anything. He said we already knew I had idiopathic severe loss axonal nerve PN, and MRI would be a waste. I was in the process of changing Neurologists, and my new Neurologist concurs with the other one. My first impression of this Neurologist is very very good, especially since he replaced one that’s beyond words to describe how awful he was; so I want to trust the new doc. The seedling of doubt I have is that the two of them work for the same medical department, and I just think I’d have closure if I had an MRI to be “positive “ nothing else is going on.
So I’m working on trying to get over not being able to get an MRI. 19 years ago I was having strange heart rate increases, and near-fainting episodes and wanted a stress test, but my doctor laughed it off, saying I was a physically fit marathon runner, and it’s normal for a professional 39 yr old woman to be anxious or stressed, and a happy pill would help (took 1, then threw the bottle away). Three weeks later I found out I had dropped dead (Sudden Cardiac Death) while on an exercise run; woke up after being on life support several days, with a good diagnosis of my heart issue and my new life started with an ICD. My doctor visited me in the hospital daily (back then they did that!). He cried, he felt worse than I did for not ordering the cardiac tests.
I survived and started advocating more for my health then. A couple of years ago, my new/first ever ENT wanted to watch a growth on my neck, since I was a new patient. A medical university had actually found the lump in a scan 10 months earlier but failed to share the scan results with anyone, so I found out only because it was in the records I requested when I was moving out of state. This ENT hadn’t received my official reports from this terrible hospital yet, but took my word and paper copy of the test I had, and did the biopsy instead of waiting 4 more months until a next appointment. Sure enough, it was cancer. So I have had success in stepping up my advocacy, I just can’t get this MRI though. So I’ve been using some positive thinking and coping strategies recommended by folks here, and trying remove that little doubt I have of an MRI being worthless for me.
Good luck with your decision, if you’re given an option. For me, I’d like the closure of knowing for sure it does or doesn’t add value, as several other things in my medical life have been the exception to the rule. But it’s a personal choice if offered.

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@pskroback

Yes, I have it in both hands and both legs below the knees. Compression socks helps the feet and lowers some.
Compression gloves helps the coldness in my hand but does not help my grip. Constantly spill or drop things. Does anyone know of a brand of compression gloves that have good gripping aids on palms and finger? I've tried the Tommy Copper, Copper Fit and several nameless ones from Amazon. Thanks.

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I’ve kind of scanned through posts about “Compression” socks because I assumed they were just for circulation, which I’ve been told I’m ok. But our symptoms almost sound identical, my hands and feet can get dreadfully cold at times. Gabapentin has greatly reduced this for me, but though I wear thick socks all the time for cushioning (along with my Skechers too), are you saying that official comprehension socks help better with cold feet? I feel kind of dumb for asking

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I have been prescribed nortriptyline for my nerve pain. I tried Cymbalta but had terrible side effects. Wondering for those of you that have found success with nortriptyline for reducing nerve pain, how long after taking it have you felt some relief? I have been on it around 12 days. My pharmacist said it can take some time for it to work.

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@slavmauve

I have been prescribed nortriptyline for my nerve pain. I tried Cymbalta but had terrible side effects. Wondering for those of you that have found success with nortriptyline for reducing nerve pain, how long after taking it have you felt some relief? I have been on it around 12 days. My pharmacist said it can take some time for it to work.

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Yes…would also like to find out about nortryptiline, I was suggested by my doctor to take, but I didn’t want to take until I found out if it works for others. Thank you.
Blessings for a great New Year with health. Ubelinda

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I take Nortryptiline with Gabapentin and it works great. I was in constant leg pain and it took it all away. The dosages built up over time. It was better than Tramadol and Percocet with Ibuprofen. I also found that Aleve works best for over the counter pain relief.

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@stevek1963

I take Nortryptiline with Gabapentin and it works great. I was in constant leg pain and it took it all away. The dosages built up over time. It was better than Tramadol and Percocet with Ibuprofen. I also found that Aleve works best for over the counter pain relief.

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I'm interested in Nortrypiline. What kind of side effects did you have?

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@ubelinda

Yes…would also like to find out about nortryptiline, I was suggested by my doctor to take, but I didn’t want to take until I found out if it works for others. Thank you.
Blessings for a great New Year with health. Ubelinda

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I too have just been prescribed nortryptiline. I took the first one, then googled the side effects. One of them is irregular heart beat. Since I was already going through a bad patch of arrhythmia I decided to hold off until the arrhythmia was more settled. I did have a great night’s sleep and no burning, but was a bit groggy the next day. So I waited 6 days to take the second tablet. Again, a good night’s sleep, no pain, but groggy. The next night I took one more. I had runs of thumping atypical arrhythmia, a fitful sleep (but no burning), and the next day I felt so horrible, groggy and tired, that I could hardly walk and talk at the same time, being terribly out of breath. I had to have an out-to-it nap in the middle of the day. So I think that’s the end of nortryptiline for me. Two days after taking it I swam 2kms and walked 2kms back to my car and felt find, so it’s unusual for me to be so wiped out that I can barely walk and talk… I’ve been experimenting with Kava powder the last 3 nights. Seems to help me get to sleep and reduces the tingling and burning. No ‘hangover’ the next day. However, it is not recommended for longterm use and can cause liver damage, so it might be short experiment. Gabapentin was a no-go for me too - too much brain-fog! I don’t know what the answer is…

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I had no heart problems. It does make you feel “high “ at times. I would rather have that than be in pain. The two medicines together tone down the highs in your emotions and also prevent you from feeling too low. Again, this is much better than being in pain for every hour that you are awake.

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@dbeshears1

I’ve kind of scanned through posts about “Compression” socks because I assumed they were just for circulation, which I’ve been told I’m ok. But our symptoms almost sound identical, my hands and feet can get dreadfully cold at times. Gabapentin has greatly reduced this for me, but though I wear thick socks all the time for cushioning (along with my Skechers too), are you saying that official comprehension socks help better with cold feet? I feel kind of dumb for asking

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Debbie, as a gift, I was given a pair of “circufiber” socks. I can’t specifically say that they are compression socks but boy, do they warm my ice cold feet up! Pricey…$20/pr but I am ordering more! Look them up at circufiber.com. Contact them because not all colors are in stock right now, I suppose because of Christmas. Wishing you warm tootsies, Bcool123

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@bcool123 are these socks tight at the top where if you were maybe retaining water it might get uncomfortable? Thanks

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