Severe Sensorimotor Polyneuropathy, Muscle Wasting, Numbness

Posted by megidigo @megidigo, Mar 24 8:29am

Hi Im 49 years old and was diagnosed with Neuropathy and then later changed to severe sensorimotor neuropathy. Nothing was really explained to me or how bad it could get. All Ive been offered is duloxetine or gabapentin despite mentioning I dont really have pain but uncomfortable feelings that last all day. Ive lost 100 pounds which includes muscle wastage and barely have bowel movements which leads to constipation. My left foot feels dead, stiff (cant move toes), numb and the ankle feels loose like its going to collapse. AFO doesnt help the ankle still feels like rubber. My right foot the toes feel like gely, and the bottoms feel like sponge or walking on bone. Both feet deformed to high arches and hammertoes. The toes are pretty much glued together. I could be walking on a broken foot and not know it. Its getting harder to walk and all the neurologist told me was dont worry about it and exercise. Ive tried to exercise but it gets harder to walk every day. I cant walk without shoes now as my arches are stiff and do not touch the floor when standing - they dont respond as they should. My hands are purpleish red and getting stiff and my bicep area is sore. I don’t see the point of going to the doctor as I keep getting worse and their response is always the same. A gastroenterologist told me recently its depression….no @&$&@ Im barely functioning lol!!

Im not really sure what the point of this post is as there doesnt seem to be anything for help. I used to have hopes for WinSanTor but I dont know. Is there anyone here with symptoms this severe? Ive mostly run into people who are in pain or numb. Not sure if a post like this is allowed even but I guess its a vent. This is mental and physical suffering everyday and it feels like no one understands or even cares. I cant work so Im most likely going to be homeless soon which is a death sentence in this condition. Ive been forced to relocate to an area where public transport is horrible but if I didnt i would have been homeless allready or sooner. I live in Canada so I have allready brought up medical euthanasia with my doctor but my case may not be severe enough to be approved - its a long process. Well hope your day is better than mine. I apologize for the negative post but I really do not know what to do. I cant pretend a smile and pretend everything is okay anymore. Neuropathy has destroyed me and at 49 I do not know how it can be possible to exist not live but exist with this. Thank you for reading all this if you did and apologize for being a bummer.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for annasonery @annasonery

@megidigo Hi. I am so sorry for your situation. I can tell you that things you wrote explain situation my dad was just 2 years ago. He was diagnosed with severe sensorimotor axonal polyneuropathy which is as they said idiopathic. Long story short they gave him some meds for pain eventho he didn't really have much pain but could barely walk and had heavy foot drop, severe muscle loss and situation was getting worse and worse. What changed for him was initially testosterone therapy which gave him strength, energy, better sleep, improved mood and easier way to make more muscle and improve bone density. He also had anemia which improved with TRT as well. His issue with toes improved significantly once he started wearing toe spacers and introduced daily walking (he couldn't walk before at all or barely). He now does around 10000 steps but also walks backwards for about 10 minutes a day which has amazing benefits for balance and gait. He also started gym and gained muscles in legs and whole posterior chain, improved diet a lot (high protein, high fiber and more anti-inflammatory foods - salmon, grass fed grass finished beef, lots of veggies and fruit, and supplements like omega 3 fish oil EPA and DHA and D3+K2). He also takes B complex and A-lipoic acid.
Unfortunately, there is no cure for this disease, but situation can be improved a lot with exercise (both aerobic and anaerobic), diet and supplements. He also told me that what helps his cramps a lot is leg bath with warm water and epsom salt as well as some topical creams which improve circulation afterwards.
You have to attack this disease from many angles but once you get use to it it's not a biggie. My dad could not walk at all and now he is walking and going to the gym. I have to say it's not perfect. He still has issues, but where he was and where is he now is day and night.

I know its a lot of things but please don't lose hope and try to start adding 1 thing at a time. My dad is 71 and if he can improve that much at his age so can you as a much younger person.

Jump to this post

@annasonery I’m 86 &’have had Neuropathy since i was 70. Spending. Quality time @ the Gym has helped balance & muscle loss.

REPLY
Please sign in or register to post a reply.