Severe Neuropathy in legs and feet and not a diabetic or alcoholic

Posted by jbb12 @jbb12, Sep 3 10:18am

Dealing with this neuropathy pain for over 3 years. Happened one month after I had an emergency appendectomy at the age of 70. Sudden onset of severe pain in legs and feet. Was not gradual pain. Been to 3 neurologists. Nothing has worked. I am not a diabetic and never drank alcohol. Tried different medication such as gabepentin, etc. tried epidurals, acupuncture, cryotherapy, stem cell therapy ($9000 which insurance did not cover). I have appointments with a fitness trainer to do my best to stay in shape, which exercising is getting so difficult. I am not overweight and have always been physically fit. I’ve had nerve tests, scans, etc. run with nothing conclusive. Said some stenosis. Next is doing an ablation on the nerve but don’t know if that will work either. Can anyone advise what to do next?

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@dlydailyhope

@jbb12
I am a 55 year old female who has had 2 spinal surgeries for neck and lower back and have small fiber/peripheral neuropathy. I am quite experienced with spinal stenosis, degenerative disc disease and osteoarthritis plus working with neurologists/spine specialists and reading MRIs.

To me, it sounds like some nerves may have been impacted when they did your appendectomy. They may also have moved you during/after surgery in a way that disrupted your spine/pelvis/hips.

Did you have MRIs of your cervical/lumbar/pelvis/hips? Your cervical spine can impact your lower body, too. Did you read all reports from your MRIs to see what they say? I have found things my doctors missed/dismissed that were serious (like spinal cord flattening/stenosis which is a spinal cord compression injury that can cause permanent damage/disability). Did you get EMGs/nerve conduction studies of your lower body to see if nerve health in legs is okay? You can have back/hip/leg/foot pain/weakness/numbness coming from your spine even if EMG shows leg nerves are “normal.”

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Ask your doctor to check your B6 level. If it is high, that might be the cause of your neuropathy. I just found this with a new neurologist after 8 years of multiple tests and severe pain. After stopping all B6, my pain is almost gone.

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In reading through your original post and the replies, re the development of lower limb neuropathy following your appendectomy, I have a few additional thoughts as to possibl'e causes. While, I am not a physician, I am a retired professor of anatomy & cellbiology, clincal pathology and laboratory medicine. I also suffer from worsening of my pre-existing MS-lower limb peripheral neuropathy due to oxaliplatin containing chemotherapy regimens.

This is a rare occurrence most commonly associated with an open vs laproscopic appendectomies. Both procedures may rarely induce reactive fibrosis during the healing process which may result in entrapment and compression of the femoral nerve and its genito femoral branch(es). Did you undergo a laproscopic vs laproscopic appendectomy?

Your MRI findings aren't surprising given you age. With aging, most individuals develop progressive lumbar spinal disc compression and stenosis, both of which may provide compression of the femoral nerve root and associated genitofemoral nerve branches which may cause concomitant peripheral neuropathy of the pelvic region, groin and lower limbs.

You report your nerve/muscle conduction studies were not particularly remarkable re your neuoropathy symptomology.

It wasn't clear from your post as to the results of any labs you may have recieved for B6, B12, TSH levels, deficiencies of which may be possible causes. I assume you've had these assessed. If not, your doc should do so.

You mentioned that gabapentin, and the interventional procedures ( acupuncture, cryotherapy and stem cell injections) you've under gone thus far have provided minimal to no relief of you pain symptoms.

This may suggest that your neuoropathy issues may not be primarily not related to nerve compression, entrapment, vitamin or hormonal deficiences. You state you are not over weight, diabetic, and don't consume alcohol, and that you are other wise physically active, have you been evaluated for peripheral arterial disease?

PAD causes progressive narrowing of the femoral an politeal arteries and the abilities of their associated branches, to supply adequate oxygen and nutrition to the nerves of the lower limbs (ischemia) and associated pain.

Common causes of PAD are elevated cholesterol levels, atherosclerosis, chronic alcohol consumption, and smoking and associated long term hypertension.

It's is commonly/ diagnose through non-inasive techniques such as determination of your ankle-brachial index with/without doppler flow ultrasound. There are number of invasive and noninvasive therapeutic approches to treat PAD such as oral hemorrereologic agents that effect the plasticity of red and white blood cells that effect their plasticity/deformability and enable them to squeeze through the clogged arteries. Surgical procedures, such as FEM-POP bypass, can effectively bypass/ alleviate arterial obstruction, improve blood flow and oxygenation of the lower limb and reduce associated neuropathic pain.

If you haven't been assessed for PAD, you might ask your doctor(s) do so before you elect for to resort to neural blockade or abalation treatments or chronic pain management offered by various physicians.

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I've be3n going through the same thing and then some. I have had those nerve stimulator implants to no avail. Would never try another one, ever! I've never made it through phase one of the trial. Got cellulitus all 3 times from the lead wires. I'm making an appointment wit another neurosurgeon next week. Just had another fluorescopic guided needle in between L4 and L5 to see if my nerve was pinched plus a steroid and lidocaine injection. On my 3rd day following procedure and still am suffering the same if not worsening pain and neuropathic symptoms. It's day to day until a miracle comes about. Keep me informed as I will you in the future. I'm curious and concerned in our similarities. Sending hope and best wishes to you telepathically. Debbie from MD.

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Also pardon my misspelled words. Lol!

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Abations are only temporary but when they work the freedom from pain is energizing. Since there is no cure for PN, I suggest that you locate a good Pain Management Specialist who will develop a program of attack for you. It has helped me for the past five years. God bless you. Charles aka brother chuckles80

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Have you considered a genetic test? For example, INVITAE.com offers many genetic tests that can reveal if you have gene mutations linked to PN. These are saliva tests and they cost about $250 per panel. I had the Comprehensive Neurological test done about 7 years ago and based on the results of that test I was diagnosed with CMT2 and CMT4B. Also learned I was a SMA and GAN carrier so I had my children tested. They all inherited the CMT mutations but they did not inherit the mutations linked to SMA or GAN.

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How do you get accepted to the Mayo Clinic?

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I am pretty much in the same category as you are. What is your opinion of the Calmare treatments? I keep trying to do the research on them. Have you considered going to Mayo Clinic for their help? I seem to be getting nowhere with my current neurologist center-had almost ever test run with no answers!

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@brotherchuckles80

Abations are only temporary but when they work the freedom from pain is energizing. Since there is no cure for PN, I suggest that you locate a good Pain Management Specialist who will develop a program of attack for you. It has helped me for the past five years. God bless you. Charles aka brother chuckles80

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Exactly what plan of attack are you using? After the nerve stimulator didn’t work and neither did the epidural-my pain mgt doctor was out of a plan!!

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Numb feet has now moved up to my ankle! Really scared. What can I do?

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