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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Apr 25 10:43pm | Replies (5972)Comment receiving replies
Hi, my name is Helen and I have Perpheral Neuropathy. I live in Australia and I was wondering if there is a support group on line. I just feel like I'm all alonewith this Chronic disorder. It would be nice to talk about my neuropathy. I was diagnosed with Perpheral Neuropathy in 2014, but has suffered with severe cramping in my feet for yrs now it has developed much further. I have been to 3 different neurologist and they have not found why I have Perpheral Neuropathy. Been through many testing but have come up all negative which is good but I still don't know why I have this neuropathy. My last neurologist said my next step would be a nerve biospy, but it seems no one does them in Australia. I have been prescribed many different drugs and the only one I take is Lyrica. I use to take a high dose but I have weaned myself to 75mg morning and night. I have been to hell and back with the pain.
Replies to "Hi, my name is Helen and I have Perpheral Neuropathy. I live in Australia and I..."
After several years with numb feet, it has gotten worse and the last 6 months it has severely affected my balance to the point that I have to walk with a cane or trekking poles. After many Dr visits, 4 Neurologists, a hemotologist, many blood tests, xrays MRIs, finally the last blood test for Myelin Associated Glycoprotein ( normal range of 0 to999: mine was 63418), I was diagnosed with ANTI-MAG Peripheral neuropathy. You might suggest having that blood test.
Hello Helen @helenholland3, I would like to add my welcome to Connect along with @jesfactsmon @larrymc and other members. You will notice that we moved your post to an existing discussion - Living with Neuropathy -- Welcome to the Group. If you click the VIEW & REPLY button at the bottom of the email notification, it will take you to this post in the discussion.
I also have idiopathic small fiber peripheral neuropathy. You can read my story along with those of other members in another discussion where we've shared our diagnosis, our personal experience and what has helped us.
- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
You mentioned the only drug you now take is Lyrica and you've tapered down to 75 mg in the morning and evening. Does that help control the pain from your neuropathy?
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@helenholland3
Hi Helen, welcome!
Sadly you are definitely not alone in this problem of peripheral neuropathy. If you want to get to know how things are for some here there are some good all round discussions here, one being "Living with Neuropathy" linked here https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/ where you will find a gamut of different PN related topics.
My wife's PN also started in 2014 after her second infusion of chemo for breast cancer. She knows what caused hers but lots of people never know what the cause is. I have kept a list of things I have heard people say theirs was caused by. Here it is:
b12 deficiency
too much vitamin b6
surgery
chemo
diabetes
hypodermic needle injections
statins
oxylates
damaged blood vessels
shingrix injection
IV port
seizure medication
There are probably many others, these are just some that people have been able to identify. So do not feel badly if you have difficulty in figuring out the cause. You are taking Lyrica. Does that help? Lots of people take that or gabapentin.Others take Cymbalta (duloxetine). BTW, there are two other Connect members I know of in Australia, one is Barry @user_che214927 and the other's name is Darren @darrenm both of whom live in Victoria I believe, not far from Melbourne.
I would be very surprised if you could not find anyone able to do a skin punch biopsy or a nerve conduction test for you there. They are fairly common methods which doctors use to diagnose PN. I'd advise to keep asking and looking, if that is something you want t do.
I hope you find solace in connecting with people here. I would recommend using the links at the bottom of any Connect page to find out more about how to maneuver around on Connect, such as "About Connect" and "Getting started on Connect" etc. I am happy you have found this forum, it's a great way to meet people and to discuss PN with them as well as all kinds of other health issues . Glad you are here! Best, Hank