Increasing weakness in Legs

@thurlibier, I have problems walking any distance with my neuropathy also but for me it's a combination of the neuropathy (no pain, just numbness and some tingling), degenerative disc disease and lower back problems that make it hard for me to walk with good posture. Exercise is one of the only things that keeps me going. I ride a recumbent cross-fit exercise bike 30 to 45 minutes a day in hopes that I can keep my leg and arm strength up. You mentioned the muscles in your feet and legs are quite strong but are concerned that the weakness will lead to a complete lack of ability to walk. I don't think you are alone in your concern about the progression of the condition. There are quite a few members who have started discussions and commented on weakness in legs and neuropathy. Here's a link that lists the discussions and comments if you want to scan through them while you wait for other members to respond - https://connect.mayoclinic.org/search/comments/?search=weakness%20in%20legs%20%20neuropathy

I experienced this exactly and was told the same thing as you and have not been able to stop the progression with any medical advice, suggestions from any forum, et al. It’s extremely depressing. I’m years in now. I know I’m doomed

That's kind of what I thought when I was in my 50s when my neuropathy symptoms first started but here I am at 81 and still plugging along, albeit a lot slower and with a lot more effort. I think you just have to take life's journey one day at a time, learn as much as you can about this condition along with what helps which can be a struggle in itself.

@thurlibier
I am a 55 year old female. When I was 47, I started to have burning/pins/needles in my feet. Long story short, it took me 8 years to get diagnosed with a variety of things as my condition and quality of life worsened. I am a single parent of a teenager so this scared me (have no extended family).

My pain, weakness and numbness worsened over the years and traveled up my body and I had various symptoms from head to toe. I was finally diagnosed with cervical (neck) spondylotic myelopathy (spinal cord compression injury at C5-C6 which caused pain/weakness/numbness in arms/hands, legs/feet, and affected my bladder). This was caused by congenital spinal stenosis, degenerative disc disease, osteoarthritis. I was also diagnosed with idiopathic small fiber neuropathy (they did a skin punch biopsy to confirm and don’t know the exact cause), etc. My lower back/lumbar spine was also a problem with compression causing neurogenic claudication). I had ACDF surgery on my C5-C6 to decompress my spinal cord/nerves, surgery on my L3-L5 to decompress my spinal cord/nerves, etc. Many of my symptoms improved. Many don’t know that a cervical spine problem can cause weakness in your legs.

Did they do MRIs of your head, neck and lower back to see what is causing this neurological problem affecting your ability to walk? I also had a hard time walking. I had all of these MRIs to rule out things like MS but that is how they saw my spinal issues. I had to read my own MRI reports because some doctors missed really important things (like my cervical spinal cord injury). Sometimes, doctors don’t look at test results in detail. You would also benefit from getting EMGs on your upper and lower limbs to see if you have any radiculopathy to your arms/legs. EMGs do not diagnose spinal cord/nerve root issues that affect leg weakness according to my orthopedic spine specialist/surgeon. For example, my EMGs at one point showed radiculopathy and not on others. I had a diagnosis of bilateral carpal tunnel but that was actually tied to my cervical spinal cord injury. My recent EMG of my lower body limbs were “normal” but I was experiencing pain/weakness/numbness in my back/hips/buttocks/legs and feet (this was caused by compression of spinal cord/nerves and symptoms from neurogenic claudication).

You may benefit getting 2nd and 3rd opinions from neurologists and orthopedic spine specialists/neurosurgeons. Do this asap because injury to spinal cord/nerves can cause permanent nerve/cord damage. Because it took over 5 years and 3 different surgeons to finally get properly diagnosed, I have some permanent damage to my cervical spinal cord/nerve roots/nerves which causes weakness and numbness in arms/hands.

Best wishes yo your as you assertively and aggressively advocate for your own health and improving your quality of life! I have dealt with and still dealing with major depression from chronic pain/disability so caring for your mental health is also very important on this journey for answers. Prayer is also very important and helpful.

My husband is much the same as I'm reading. I'm not a doctor but will.share his experience He has had non diabetic neuropathy for 5 years from feet to chest last month in 12 days he went from slow walking to wheelchair. He was sent to UCSF and diagnosed with a rare condition where he has normal b12 reading in blood but it is not getting into the nerves of spinal cord. There are only 2 hospitals in U.S studying this. He is on an experimental treatment of high dose b12 injections daily. He is a difficult case as he now has such severe damage to spinal cord from c2 to T12. Maybe something for you to ask about. We were fortunate that the neurologist on call had just read a paper on this from UCSF and called them. Other neurologists had never heard about this.

Yes - I have the same thing and did go to Mayo. The point everyone makes is I should exercise more - especially my husband who nags me about it. My walking is very limited I agree. I’m just not to the point of enthusiasm about it. I’m terrified about falling so use a cane.

Doomed is a strong word but on the other hand I admit I’m not looking forward to a life of deterioration. I’m tired of life frankly. I’m tired of apologizing to my husband for changing his life, for making him a caregiver. I get to the point of “I’ve had a great lif so far, so end it!”

Jean, I completely understand how you feel. I feel the same way. I had great health until a year ago and now I am facing a future that might mean never walking again. I want out. I just don't know how.

LOL. Doomed is too strong but you talk about being done with life because of it. That sounds like doom to me.

Have you considered trekking poles? While I don't have PN, I have multiple foot ankle knee Osteoarthritis & tendon, ligament issues. I find the trekking poles are much better for me, balance, than "just" a cane. If you have access to any water walking pool exercises, that might help too. And a good PT program is like gold for me.