Multifocal axonal distal neuropathy

Posted by ragtop2005 @ragtop2005, Sep 5 7:22am

I have autoimmune disease and just recently diagnosed with Multifocal axinol distal neuropathy? I was pretty sure I had neuropathy not much feeling in my lower legs and feet and it’s just been getting increasingly worse where it affects my balance/walking sometimes. I went and saw my neurologist he did testing now it has a name! I take Gabapentin but I can’t increase it anymore makes me too loopy! He suggested I start walking with a cane or walker to give me a little more stability. Mentally I’m not there!

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John, Volunteer Mentor | @johnbishop | Sep 5 8:25am

@ragtop2005 - I can relate to not mentally being there yet. I do have a cane that I bought when I had my right knee replacement done but no longer use it on a regular basis. I also struggle with balance so do my best to work on a few exercises I learned from a physical therapy session a few years ago along with trying to exercise regularly to keep up my leg strength. There is another discussion you might find helpful.
-- Poor balance your No. 1 issue? Don't miss this FPN webinar!
https://connect.mayoclinic.org/discussion/poor-balance-your-no-1-issue-dont-miss-this-fpn-webinar/
There is a link to the webinar a few posts down in the discussion above. You mentioned you can't increase the gabapentin dosage because of the side effects, have you looked into any alternative treatments or therapies?

brhb2011 | @brhb2011 | Sep 5 12:23pm

@ragtop2005 i started to deal with balance issues at 36 and three years later diagnosed with MS and neuropathy. During the initial years my neurologist said use a cane and I was too stubborn and then I stumbled and almost fell on a child. Two things occurred from that day: 1) I started using a cane when needed and found it drastically helped and truly the only person that cared was me 2) I am now safer in my environment. I know it’s hard but it can truly be a game changer . Physical Therapy/Exercise can help too and I would recommend trying to incorporate that into your daily routine. One day at a time.

ragtop2005 | @ragtop2005 | Sep 5 1:58pm

Thank you. I really shouldn’t complain I’ve had it really pretty good. Loss of son and step son. Then Covid hit - that’s when this body revolted. Autoimmune- kidneys- liver now neuropathy. I just decided to have a pitty party which I have every once in awhile then I move on. I have people who support me which helps