Severe Sensorimotor Polyneuropathy, Muscle Wasting, Numbness

@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.

@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.

@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.

@annasonery He is doing much better than many neuropathy patients. Keep it up! Movement is key for so many aspects of a quality life. Has he by chance had any K Laser therapy (Chiropractic and not covered by Medicare)? I am about to try it. I have similar symptoms to your Dad but still go to gym classes daily, walk, etc. Keep up the good work!

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

@moorethrpy Thank you so much ♥️
He is a real fighter and I hope things keep improving. I don't know what is it about movement but so many positive things happen when we move. We are not made to be stationary beings.

As for K lasted therapy he did not try that yet. Is it any good?

From therapies at a clinic he only does NMES - Neuromuscular Electrical Stimulation and he says it helps him a lot. He does that once a year for few weeks.

There is also some exoskeleton which I got him from amazon and it helps with spine posture and he swears by it. He also told today that he tried Carbon Fiber AFO for ankle support and said it helps him walk even better.
There are many things that patients can do which can help them but as I said in previous post you have to do multiple things from different angles and results will come ♥️

Bless you

Hello! I have severe axonal sensorimotor peripheral polyneuropathy, small fiber neuropathy, CIDP, small fiber neuropathy, dysautonomia, and cardiac autonomic neuropathy aka CAN. I have lost the use of my left leg and have drop foot. I can no longer feel my leg when I touch it. The left foot just flops down and my ankle so stiff I can hardy move it. Some days I just start crying.My ankle kills me. I have no feeling in my left leg or hands. The cardiac neuropathy causes my Bp to drop 96/44 or it jumps to 150/100 which I get really bad migraines when this happens. I get dizzy and sometimes black out. I have bradycardia (heart beats too slow) or tachycardia (heart beats too fast). I was given eight years to live by the electrophysiologist. I have two years left. I have lupus, sojourns, mixed connective tissue disease, RA and Hashimotos. They say you can’t die from neuropathy yet you can when it starts moving into your organs.
The lupus has caused seizures in me. Gotta love that one.

@artemis1886

Does IVIG help at all? I read that you are on IVIG. I dont really understand how it works as Ive read it can restore mobility in some and have heard that from people in support groups I attended. I had hoped that was an option for me as Im wasting from the motor neuropathy and gastroperisis (not diagnosed but not having bowel movements) Do you have any recommendations or anything other than IVIG?
I wander why its the left leg? I wear an afo brace on my left foot and Ive noticed others like you mention the left leg. Reading your post makes me hate this disease even more and solidifies that it needs ****ing more research. So what that it isnt cancer? It kills ones quality of life to nothing. Maybe not for all but I know it can and will. Someone posted on this thread that this disease is no biggie when you get used to it ……I beg to differ. I learned about CAN from your posts and find that can relate to many of them.

With that said I really do not know what to say. I want to say something of meaning and not empty. My mind is fixated on my symptoms constantly so it is hard for me to get words out other than anything disease related. I will leave it at thanks for your reply and sharing. Hoping you at least got some sleep.

@megidigo IVIG panzyga helps if it is autoimmune related. That’s why it helps with CIDP and motor neuropathy. Mine is! It has given me back my balance and it has given me the capability to write my name. I don’t know about others but I had neuropathy prior to my fracture of the actebulum and four left hip replacements. I have Avascular necrosis and osteoporosis from the lupus. It had moved into my left knee. I was on IVIG as a child from age 7-18. The neurologist said if I would have stayed on it I wouldn’t be in this shape. Gee Thanks!