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Severe Sensorimotor Polyneuropathy, Muscle Wasting, Numbness
Neuropathy | Last Active: 8 hours ago | Replies (8)Comment receiving replies
@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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@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. 🙏🏻