Numbness in lower extremities

Hi @upnort, I have numbness only symptoms with my idiopathic small fiber perihperal neuropathy and like you my Mayo neurologist told me there is nothing that will help with numbness - drugs or OTC products. I tried many with no success. I did find some help with supplements but it has really made it go away but just seems to have slowed or stopped the progression in my case. In one of your earlier posts a member asked you if you have tried or heard of Myofascial Release Therapy (MFR). I'm still looking into it myself and trying to find someone accredited that is close to me. There is another discussion on MFR that you may want to read through.

Myofascial Release Therapy (MFR) for treating compression and pain:
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@jenniferhunter may have some thoughts or suggestions to share with you. I posted my story in the Member Neuropathy Journey: What's Yours? discussion here: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

You mentioned the numbness being caused by a lesion on the spine. Did they think the lesion is compressing a nerve?

In an earlier post last week, I gave a brief history of my myelopathy journey with the Mayo Clinic. In that story, I did mention I had connected with a physical therapist in my hometown in northern Wisconsin who specializes in MRF. Granted, I only had two sessions, but I did not experience any relief from the numbness. Again, I have no pain but only the constant (read 24/7)reminder that my lower extremities no longer function the way they should. My symptoms are slowly progressing into that area where I have visions of a not-to-distant future filled with canes, walkers, and wheelchairs. Since the lesion is on the spine, the Mayo neurologists do not want to risk a biopsy, and the initial spinal artery angiography(January, 2019) revealed no abnormality. A year and a half later, the original diagnosis of thoracic myelopaty still stands, with no known cause, and no known "cure" or relief from said symptoms. Again, as I mentioned in two earlier posts, I have any a myriad of blood draws, scans, imaging, spinal taps, bone marrow biopsies, bone density tests - all with negative resuts. I visited Mayo again three days ago for yet another MR thoracic spine imaging exam and CT abdomen/pelvis exam. The results: negative, no change, status quo, zero, zilch - and the beat goes on...Now my Mayo neurologist, whose expertise is myelopathy, wants me to return to Mayo again for yet another test - a repeat of the invasive spinal artery angiography. How many times does a test have to be repeated until both patient and doctor say enough is enough. Frankly, I am tired of the testing scene as none of the above mentioned tests have yielded any - and I repeat - any clues as to why my lower extremities are slowly fading from practical daily use and function. I am not on any medication as, according to the Mayo neurology department, there is no cure for the weakening and numbness of the lower extremites (and again, according to the Mayo neuorlogical experts, the function that I have left will more than likely become further weakened).
Perhaps it is time to consider the possibility of presenting my case to the National Institue of Health, who routinely take cases that Mayo cannot solve, but I am not sure my case would even qualify for their consideration.
I have reached out to this site in the hope of giving me some insight, new information, or a glimmer of hope to find relief from this myelopathy (and it now begs the question perhaps Mayo does not want to hear: what if I have been misdiagnosed from the get-go?) My Mayo neurologist did say there are some cases Mayo cannot successfully treat because they do not know or have the answers. A thorough research of topics related to the spine, neuropathy, or the nervous system reveals symptoms that are extremely similar but yet different enough to give each a specific "marking" or classification. There are so many diseases of or related to the spine and nervous system that mimic most of my symptoms - all with different names and treatment plans. Maybe a second pair of eyes would be in order to have the question addressed, if not answered.
In the meantime, I will continue to push myself with discipline and as much of a positive attitude as I can muster.

@upnort You mentioned a lesion on the spine. Is there a physical compression of your spinal cord somewhere? Is there a possible surgical correction that could be done? I am a Mayo spine surgery patient for cervical stenosis. My reports say I had mild myelopathy, and it never showed damage to the spinal cord on imaging. The opinions I had from the neurologist and the spine surgeon at Mayo were a little bit different. The neurologist saw it as not that bad in terms of a deficit, but he did recognize the thoracic outlet syndrome that I have , although he said the surgeon may look at this and say something else. The neurosurgeon did offer to fix the compression, and having that surgery changed my life. I do know that thoracic spine surgery is more complicated because of the lungs and many spine surgeons don't operate on the T spine, so you would need an opinion from a deformity specialist who takes more complicated cases. My Mayo surgeon, Dr. Jeremy Fogelson would be a good specialist to see with your concerns. If you have not consulted a surgeon, it might be something to consider. Spine surgeons usually have a preferred neurologist they like to work with that they choose for the patient as was the case for me. Even though I had neurology tests and reports before I came to Mayo, they did their own exams as requested by the surgeon.

I understand your frustration. I was misdiagnosed by 5 surgeons before I came to Mayo. I found medical literature with cases similar to mine, and when I requested to come to Mayo, I sent copies of that literature in with my imaging. I found that literature by looking up terminology from another paper. I also watched a lot of online videos from conference presentations by spine surgeons. The spinal arteries feed the spinal cord, and perhaps they are looking for a problem in circulation supply. This supply can also be affected by a misalignment of the bones of the spine. For example, Bow Hunter's syndrome happens when the upper cervical vertebrae stay rotated from turning the head and stretch the vertebral artery as it also sends blood supply up to the brain. When the person looks straight ahead, these vertebrae stay twisted and compromising the blood supply.

Are there any notes on your reports that indicate a structural issue or misalignment? Has your entire spine been imaged with an MRI? You can have problems in different areas, and maybe they are only looking at one place. Sometimes having the spinal cord being touched by something at 2 different levels causes confusing symptoms. The spinal cord is very organized with different functions in different areas. For me, the compression in my neck caused pain in my legs and entire body, and when muscle spasms pulled my neck out of alignment, my symptoms got worse. I had a bulging lumbar disc that was asymptomatic until I had compression in the cervical spinal cord. It did progress to some numbness and tingling in my lower legs, but surgery fixed that by uncompressing my spinal cord.

I can help search for some research in literature if I knew a little bit about the details in your reports. Don't post them, but are there descriptions of the spine and affected levels that you can share? I do know that spine issues are tricky to diagnose and they have to rule out peripheral nerve problems and figure out if symptoms are coming from the spinal cord, the nerve roots, or any place along that nerves path through the body. I am told by my physical therapist that with aging, nerves wear out and people develop neuropathy. Another possibility with peripheral nerve issues is that they can be compressed by overly tight muscles that change the alignment of bones, tendons and ligaments. The nerves pass through very small spaces around or between them. Myofascial release helps get the body realigned by releasing that tight tissue. For example, my pelvis can go out of alignment when one of my hip bones pushes forward. When that happens, I get pain down my leg, low back and groin until I release the tight muscles on the inside of my hip bones by laying on something that will press into it. I put a lot of information about MFR into the discussion that John referenced. That can help if it is a physical problem. MFR can also help with spine alignment which in turn, can possibly lessen symptoms related to that.

I spent 2 years looking for a surgeon to help me while I was just getting worse. I know how frustrating it is, and I knew how my symptoms were connected to my spine problem because I was working with a physical therapist and my symptoms were reproducible with a change of spine position, still, none of the first five surgeons believed me. I had been tracking the progression on body diagrams.

Initially, the edema in the thoracic cord went from the inferior T6 through superior T12 levels. That has remained unchanged. No evidence of new lesion. But symptoms mentioned above still persist and continue to worsen. We have decided to do a repeat IR Spinal artery angiogram (possible AV fistula - first one performed on 01-15-2019 identified no abnormality ). After this, we basically have run out of options at the Mayo Clinic ("the place to find answers") and will look at getting a referral to the NIH (of unknown diseases).

How incredibly frustrating for you. I am so sorry that you are having this ongoing issue. As someone who had an unusual version of what was initially diagnosed/treated (and dismissed by many) as a common problem, I can only begin to imagine your anguish. Wishing you hope and a diagnosis with a treatment!

Thank you. I will keep you and others on this thread posted as to what comes next. Wishing all of you the best in keeping up the good fight.