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Severe Sensorimotor Polyneuropathy, Muscle Wasting, Numbness
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.
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Hello @megidigo, I can't even imagine how difficult this disease has been for you. I do know that you are not alone and there are others out there dealing with similar symptoms with your condition. I did a search of Connect for Sensorimotor Polyneuropathy what helps and it found 21 comments from members. Here is the search results with the links if you want to scan through them - https://connect.mayoclinic.org/search/comments/.
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2 ReactionsThanks I will take a look. I used to live in one of the Canadian cities where WinSanTor did clinical trials I found out. I had a thought this morning that I should just offer myself and body up as a living test research subject in exchange for living in a hospital. Like something in a sci fi movie. Well when I was diagnosed I was told there is nothing you can do other than join a research study. I should have inquired about that more looking back. Thanks for your kind words.
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1 ReactionOh, ironically if I were to pursue the medically assisted death I would have to return to the city I had to leave since I couldnt work. I dont think the person I talked to here took me seriously however my primary does. I have been denied many referals where I live now from my doctor who is still in my previous city home. I knew how bad the healthcare was from living here in the past and it was a fear of mine when I had to return here which makes living with this disease worse.
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2 ReactionsMy heart goes out to you. You have reached out to this community and I hope someone can help in some way. My interest in neuropathy comes from my son. Fortunately it is not severe as yet. I was prompted to reply to your post, not only because it was so touching but also because some aspects in a small way chimed with my condition. I had a severely compressed nerve at L4/L5 lumbar levels. Like you I had no pain but increasing foot numbness and significant muscle weakness . Eventually I was diagnosed with chronic denervation resulting in significant muscle atrophy. I had lumbar decompression surgery and my numbness went but as my nerves have recovered the muscle weakness has been a barrier to recovery as has foot drop. I am getting neuro physio and hydrotherapy but progress is very slow and not assured. Thank you again for your post. It has helped me. I dearly wish I could offer you more.
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4 ReactionsThanks I appreciate your words and send good hopes in your recovery and your post is of help
@megidigo I am so sorry to hear how badly you’ve been treated and all the trials you’re going through.
Your description sounds a lot like
Charcot-Marie-Tooth-Disease. Did your neurologist mention this possibility? Here’s some information about it. Please don’t give up hope. There may be some kind of treatment that can make it more manageable. Sending warm wishes.
https://www.mayoclinic.org/diseases-conditions/charcot-marie-tooth-disease/diagnosis-treatment/drc-20350522
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1 Reaction@db72 thanks Suz appreciate it! I have the same diagnosis as you except ive been told its from diabetes, toxic and also idiopathic. No one in my family has CMT but I was planning on bringing it up with my neurologist the other day as another poster mentioned it as well. Sadly didnt really get the chance in the 15 minute appt as the neuro told me he doesnt need to see me anymore and for me to go live and enjoy life….. thanks doc. I noticed in some of your posts you mentioned tinnitus and Ive been getting that too lately. I did bring that up and was quickly told nothing I can do but if you want I can refer you to some other specialist. I declined as I figured there would be no point. I had some other concerns I didnt get the chance to explain or bring up as I was rushed out of his office as he let me know he didnt need to see me anymore while acting like he had cured me of this condition. The most he told me was to not worry about it. So I no longer have a neurologist neuromuscular specialist. I guess there wasnt much he could do but it would have been good to have access to the guy if I lose complete mobility. I wander why a neurologist isnt interested in having a patient with neuropathy. NEUROlogist…NEUROpathy lol. Im starting to think theres no point to see doctors anymore as they just lead to dissapointment and make me feel worse after seeing them.
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1 Reaction@megidigo I totally get your utter frustration with doctors. I’m on my third neurologist and the only benefit I’ve gotten from them is a firm diagnosis and some explanations and advice about how to avoid falling, Found out my nonstop tinnitus is caused by the nerve damage as is my POTS and chronic constipation (which btw a shot of Milk of Magnesia before bed every night has remedied).
PN Treatment wise, Gabapentin was prescribed which I refused because I don’t have terrible pain but have numbness and muscle wasting and have fallen several times. My legs are even deformed looking now because the fat distribution is wonky due to muscle damage. But that drug with its side effects is the last thing I need.
My latest neurologist believes mine is autoimmune brought on by the Epstein Barr Virus I got 40 years ago. It attacked my nervous system and triggered ME/CFS and 20 years later the PN started advancing. So, I have been disabled since I was 36. I’ve been dismissed by dozens of doctors and specialists over the decades and I totally get how you feel!
So I have both ME/CFS and severe “idiopathic” axonal sensor motor Polyneuropathy doing a number on me. Currently I’m homebound and only get out of the house a couple times a month. I can still walk with caution indoors but use a compact motorized wheelchair I bought on Amazon when I go out,
I know you’re depressed and discouraged right now but that part can change. PLEASE don’t consider ending it all! You are only 49! It is still possible to have a fulfilling life even with severe disabilities. It just looks a lot different than we expected it to.
Drs really can’t do too much for the PN but there are things you can do for yourself. Cognitive Behavioral techniques have helped me enormously in coping with anxiety and depression. I’ve done it all myself through books, online info, support groups etc because I never had the money or energy to go to a therapist. There are even YouTube videos for learning techniques to cope with tinnitus.
For me, I also gain much comfort from prayer and reading the Bible.
I really hope you can find a more sympathetic doctor that can encourage you.
Please take care. 🙏🏻