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Sat, May 16 11:43am · Numbness in lower extremities in Spine Health

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.

Fri, May 15 10:51am · Numbness in lower extremities in Spine Health

Is there any medication – either prescription or OTC – that effectively deals with numbness in the lower extremities (feet, leggs, knees)? If so, has anyone had any success using these medications without side effects? According to my Mayo nuerologist, my numbing legs may be caused by a lesion on the spine, and there are no known cures for this numbness, although there are meds that deal with pain asscociated with numbing and tingling. The present goal is trying to keep the present situation from getting worse. But how is this accomplished? Mayo is touted as "the place for anwers"- After a year and a half, we have yet to find any answers. Numerous blood tests and a dozen scans have revealed nothing. The thin white line along the spine has not changed, but my numbing and weakening legs have slowly worsened. We have even discussed a new set of eyes on my case: NHI in Bethesda, MD. But that is a long shot even if they decided to accept my case. Travel, expenses, and insurance all would weigh heavily on such a decision. Please feel free to share any experiences that would shed any light. (**My diagnosis is spine-related according to Mayo Clinic (thoracis myelopathy), although my symptoms appear to be more neuropathy-related, in its many forms and variations. To my knowledge, I know of no other cases like this within the Mayo Clinic Connect members.)

Mon, May 11 9:43am · thoracic myelopathy in Spine Health

How has Dr. Rosen helped you with your situation?

Fri, May 8 12:28pm · thoracic myelopathy in Spine Health

I am going on 20 months with thoracic myelopathy (diagnosed at the Mayo Clinic) with no relief in sight. Extreme numbness from toes-feet-legs, knees, thighs, hips, pelvis, buttocks, lower back is 24/7. There is no pain with this condition, only the constant numbness/tingling/lower extremities stiffness with spasms-twitching in my right leg while sitting for long periods of time. I have been a life-long runner, but that had to stop when this condition reared its ugly head. Inflammation is visible in ankles and knees, accounting for the stiffness and reduced mobility when walking and exercising and standing or sitting for long periods of time. My balance continues to be off, with a sometimes unsteady gait. These symptoms continue to get worse. Mayo Clinic cannot find the source of the spinal lesion nor can they – up to this point- find a solution to the problem, or even a way to minimize or slow the progression of the disease. Six month regimen of Intraveneous and oral prednisone plus a few other meds did nothing to abate the symptoms. The side effects of these meds were terrible and not worth the risk to continue. I have had dozens of blood workups and tests, two spinal taps, an artery angiogram, and scans and imaging that are now into the double digit count. I have been med-free since February, but my symptoms have slowly progressed. I turned 70 in February, and I thought it might be time to change directions with a different approach. Dr. Flanagan (Mayo neurology) and I agreed to forego more testing for the time being and try a more homeopathic agenda, which I have done since February: CBD oil/CBD inflammation cream, myofascial release, water aerobics, chair yoga, mindfulness/meditation, turmeric/anti-inflammatory supplements, compression stockings, hot/cold packs. Unfortunately, these yielded no positive results. Throughout all of this, I have been faithful to my daily exercise routine of 20 minute stretching/strengthening lower extremities and 30-40 minute aerobic exercise (treadmill, bike, walking, hiking w/trekking poles). I have to push myself more now than ever before, and I feel extremely tired and weak after these sessions rather than invigorated or attaining that feeling of well being ("runners high"). I feel I am now at a crossroads. I am scheduled for another round of tests next week followed by a visit with Dr. Flanagan with the hope of coming up with yet another health care plan for this diagnosis. Honestly, this scenerio is getting more difficult to endure without some hope that Mayo will "help me find the answers." Any feedback would be greatly appreciated. Thanks for listening.

Nov 2, 2019 · Anyone here dealing with peripheral neuropathy? in Neuropathy

I have also heard so much recently about The Protocol. What is it, and where can I find information (blog?) that might be of help to me in my continued search for some answers to my progressive myelopathy?

Nov 2, 2019 · Anyone here dealing with peripheral neuropathy? in Neuropathy

Thank you so much. I shall seek and find!

Nov 2, 2019 · Anyone here dealing with peripheral neuropathy? in Neuropathy

Thanks. I have just started to investigate the John Barnes method of myofascial release for my progressive myelopathy. It looks promising – without throwing another prescription drug (complete with unwanted side effects) at this ongoing problem. Does anyone know if there is a mfr therapist at the Mayo Clinic – Rochester. MN?
One year ago a spinal angiogram and a PET scan of the body both were negative for an underlying etiology; two spinal taps also showed normal results. My latest MRI of the thoracic spine still shows the white line (a long segment of "signal abnomality") with no relief of constant numbness in lower extremities. Neurologist recommends a "steroid sparing agent" (this after a 5 month course of a 60mg daily regimen of prednisone) for a 6 month period: mycophenolate (CellCept). This drug comes with a long list of side effects. I do not want to go through another period of potentially seeing no benefits but experiencing numerous risks (this drug comes with a "black box warning.")
I am scheduled to see a PT at Mayo in a few weeks. I am hoping I can get one who knows the mfr therapy.
Any advice or other suggestions are more than welcome.
Thanks for listening.