Living with Neuropathy - Welcome to the group

Beth - I have been fighting my neuropathy for 50 years. Typically, it waxes and wanes for younger people, but it has hit me hard the last ten years. Five years ago, as I was googling the disease and treatments, I came across a study done in Europe that stated success with IVIG. Success defined as less pain and slows the disease down. I showed it to my neurologist and he checked into Medicare coverage. Yes, Medicare covers it. But, very expensive. I have Medicare/TriCare for Life and that covers everything. But a friend here only has Medicare and she cannot afford to have the treatment every month. I spend six hours for two consecutive days each month receiving the treatment at an infusion center. Knocks the pain down from 9+ to bearable 4 to 6. After three weeks, pain starts to ramp up again, which is common based upon my research.
Nerve diseases are extremely tough to treat. That’s the verdict from my five neurologists. Think MS - a nerve disease that gets a lot of money for research. Nothing yet. Treat the pain. I used to be a long distant cyclist, a racket ball player, and a runner. Three years ago I was down to walking several miles per day. Lost that. But I still have my arms and I took up swimming. Legs don’t work in the pool, so I use those neoprene swim gloves to compensate. Park my walker and slip into the pool. Looks funny with my big gloves and my Pull Buoy between my legs, but it works. More exercise = better sleep = less meds at night.

Eric

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@ericd47, I would like to add my welcome along with @helennicola and other members. Thanks for sharing your story with us. You have certainly had a long journey with pain and neuropathy. I'm glad to hear the pain is manageable and you have a plan you are working on. You might also be interested in reading what other members have shared in the following discussion.

- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Do you mind sharing how you found Connect?

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Hi John sorry for interrupting discussion. Feel silly but how do I log myself iback in as need to ask u important questions. Thanks

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@poppsy1, If you can post on Connect like you did here you are already logged into Connect. You just need to go to the bottom of a discussion and type your question and if it's to a specific member, make sure you type their member name like I did so that you would receive an email notification for this post. You can also go to the bottom of any Connect page and click the link Contact Mayo Clinic Connect and send a message to a moderator. The link is located in the footer of the page in the left most column.

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I had a my right knee replaced on November 11th 2020. I woke up from the surgery with the toes on my right foot freezing all except my big toe. So the knee hurts but my toes and my foot swell and give me all types of pains. I have had a nerve test and they said it is normal. I am in so much pain I don't know what to do. Does anyone have any suggestions. I am taking 2 nerve meds, 1 muscle relaxer 500mg of Tylenol and its not helping.

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I had a my right knee replaced on November 11th 2020. I woke up from the surgery with the toes on my right foot freezing all except my big toe. So the knee hurts but my toes and my foot swell and give me all types of pains. I have had a nerve test and they said it is normal. I am in so much pain I don't know what to do. Does anyone have any suggestions. I am taking 2 nerve meds, 1 muscle relaxer 500mg of Tylenol and its not helping.

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@wannie .... sorry i dont know answer but just noticed your post and my first thought is; doesnt sound right to me that a knee replacement would end up with swelling, cold and pain in one foot!!

Nerve test can show normal but doesn't mean there isn't something else amiss ... there can be other reasons for pain, freezing, swelling besides 'nerves."

Did anyone ask the surgeon why a knee operation affected your foot.... Did you or could you ask your referring doctor..... can you get a copy of the operation report? Plus a copy of the "nerve test" results - I have a copy of my nerve test results, just requested it from my doctor at the time. It is all information on our file, we can request copies of correspondence, reports, etc. and i was not charged for copies. I even got last week a full printed copy of my former dentist file .....

I got copy of some of my file from our hospital in Ontario under freedom of information act.... not for legal purposes but I wanted copy as no longer have a family doctor.

my daughter has a few friends who have had knee surgery and i can ask her to ask them if they have any foot pain etc.... and am sure you will get some more comments from the many regulars on this site.... hope you get to the bottom of this issue. J.

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@sunnyflower, make room for me under that rock. I did the same thing. Hahahaha, Chris

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I talked to my primary care about and he is requesting copies of everything for my file. I am supposed to see him on the 8th but I think I am going to request to see him sooner and ask for a doppler just to be sure there is no blood clots as well. This is my 3rd one and I have never had a problem with my foot. The surgeon said everything is in order and he said when they can't find out what is causing it they blame neurology. So they did an EMG and said it was normal but something they did made my toes stop tingling for a moment it came back with a vengeance. some times I can't put shoes or socks on. Once I settle down for the night it starts to contract and hurt so bad it's stays so sensitive that I can barely keep a sheet on it. Today is the first day that it has made me cry. cause I am stuck be tween the rock and the hard place.

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