Living with Neuropathy - Welcome to the group

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Hi Colleen. My Dad was just diagnosed with axonal sensitive motor polyneuropathy. He is 78 years old and has always been in great shape. He works out at a gym at least 3 times/week. He experienced sudden fatigue two weeks ago and pain in both legs (mostly in his calfs). He became so restless and did not sleep for an entire week. Doctors told him it was a virus and told us to wait it out. We took him to the emergency department 3 times in one week - once by ambulance and finally they admitted him. He has been in hospital for a week now and blood tests have revealed this diagnosis. At this point, he cannot stand. He says he cannot feel the floor. He can move his legs while lying in bed (up and down) and can move his ankles in a circular motion. His strength, however, has significantly declined. He is on his 3rd of 5 treatments of IVIG treatment. His physician told him today that if it works, she does not expect to see improvement for one to two weeks. She also said that if it does not work, there is no other treatment option. Can you or anyone else offer anything new on this condition? Thank you so much!

Hi Gailfaith .... Colleen gave me your post to read, as I also have had a nasty fall almost now 3 weeks ago. But, yours was far worse than mine .... I can't imagine the pain you are enduring. The management here takes care of outside maintenance very poorly and I fell due to a broken walkway from my building with a metal piece, about 5" x 2" protruding from it. Well, my heel got caught on the metal and I flew .... I hit the concrete pad that holds the electrical system on my left side,my head bounced on the concrete and up and hit the metal strips on the metal box. I've had trouble adjusting to this move anyhow (from MD to VA), and I think this really opened the water works. I just laid there and cried in pain. I did not want to move, and I knew I had been knocked out briefly. Now this is a low income apartment complex, and yet not one person came to help me. I just wanted to sleep. I finally rolled off the concrete pad, and managed to get up using my right arm and leg. I came in the house, upset, hurting, dizzy, and nauseus. I laid down and fell asleep which I know is totally wrong with a possible concussion, but I was not even thinking concussion. The next day, my whole body hurt, especially the left side on which I landed .... I slept, drank water, went to the bathroom, and that was it. Finally the following day I went to the doctor, was immediately diagnosed with a concussion, and severe bone and soft tissue injury. They x-rayed my whole left side and my back and it didn't appear that anything was broken, but they were going to send me for an MRI which would find hairline fractures, but they also told me not to drive. Hmmmmm ..... so I was to get there how? I saw the doctor 2 more times, taking a cab, was put on muscle relaxers (which were worthless). My whole left side and head just ached. I'm finally doing better, but am wearing a brace on my elbow, still hurt but it's slowly getting less, and continue to have side effects from the concussion. The doctor told me that internal soft tissue injury can take a long while to totally heal and that I just have to tough it out, along with the effects of the concussion.
So, here we both are, but I keep thinking ..... at least I'm alive. I do use a cane. You take care of yourself friend.
abby

Mentor John suggested I post here. I've been dealing with Anti-MAG neuropathy for many years, but am now wondering if anyone has had any experience with stem cell therapy for neuropathy....curious if Mayo is using that therapy for neuro issues.

Hello @gailfaith - I'm sure you have already checked out any meds prescribed to you. I have been dealing with vertigo for a couple years, and on the prescriptions I take, the labels on the bottles clearly read "may cause dizziness"!!! That is on Gabapentin, Tramadol and Requip bottles, which I take all 3, every day, for neuropathy, restless leg and pain. I've discussed the issue with my dr and I'm trying to get off those meds, but it's nearly impossible. Good luck to you - I know it's so good just to be back in your own cottage - and am amazed that you had the courage to get back on your scooter!!

Hi @barbarn. Did you note that just increasing my daily consumption of carbs, stopped the vertigo! I am prediabetic, so I severely limited my eating of carbs. Hope that works for you also. @gailfaith

Well, I can't imagine not having one person come to help you when you fell!!! Are you in senior housing? or, maybe you're not even a senior...

I am 77 and married for 54 yrs, quite active and overall in pretty good health---however, I have had two cervical spinal discectomies (2001 and 2012) (there is some permanent scarring), and have a chronic nerve pain problem (burning or stinging-like, sometimes just aching) in the chest area (note that back and neck paid is not my problem), which radiates out, and there are neuropathies (e.g. hands); the discomfort is persistent but not constant---e.g. it is not there when I am sleeping and varies in intensity. Have seen a variety of neurologists and pain management specialists over the years plus have tried a variety of the usual pain pills; in addition, I have seen two acupuncturists and did an ayurvedic massage---none of that has worked. The pain problem has gradually gotten worse over the years, but nobody has been able to pinpoint either the cause or any helpful treatment. Cardiologist says my heart is OK---I do regular, including vigorous exercise, without any additional problem (do a lot of walking, hiking [did a 14er near Leadville last summer and a 5k run in Sept.], bicycling, swimming & some jogging). This pain does affect my quality of life, but although I am somewhat resigned to living with it, I would prefer to do better because it interrupts my routines. Have had MRI's periodically (last one about 2 yrs ago) but they never show significant additional deterioration of cervical spine. I am also still trying to find a neurologist who can help me---the last one had me try pills that didn't work and the prior one told me frankly that there was nothing that he could do for me. I am open to any suggestions as to a path forward. Thanks, John

Hi @jlsoerens -- I'm tagging our Director Colleen @colleenyoung and one of our moderators Justin @JustinMcClanahan to see if they may be able to share any information about stem cell therapy at Mayo Clinic.
John

Hi @llhodnett -- welcome to Connect. I see that your post was addressed to Colleen but without her username tag she will not normally see a post unless she happens to see her name. By adding her Connect username @colleenyoung she will receive an email notification and be able to reply to your post.

I would like to thank you for being an advocate for your father. It's really important to be your own advocate or have someone like yourself advocating for you. I'm 75 and have idiopathic small fiber peripheral neuropathy but only have numbness in my legs and feet, no pain. I am tagging a few members who have discussed an IVIG in a post and may have information they can share with you. Please meet @bburleson1 @gratefulone @mllucas @mllucas @ginifuller @captnick @kdp3186 and @5134177246.

John