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thoracic myelopathy
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.
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Hello @upnort. Thank you for sharing your healthcare journey since your diagnosis of thoracic myelopathy. I was happy to read you are not in any pain, but the rest of the symptoms you described as part of the condition must be very challenging to live with.
I am including @irene5 and @donfeld as they have been part of spine health discussions and may be able to share some thoughts or experiences.
I was happy to read that you and your doctor have tried various things, but sad that you mentioned they did not yield positive results. I hope that your upcoming appointment will give you more answers and a clear pathway. Other than Dr. Flanagan, are there any other specialists at Mayo Clinic you have seen?
Dr. Rozen it's a very good neurologist I in fact he has similar pain problems so he's good to relate what we're going through. He's the only one that helped me really at the Mayo. I wish you all the best and thank you
It might be spelled Rosen
How has Dr. Rosen helped you with your situation?
Still Looking for help with myelopathy.
Any successful health care plans relatied to this progressive disease?
This is my story exactly I'm 73 and have suffered for 15 years, for 12 years I was treated in civilian hospitals and knowing diagnosis could bankrupt me in trying test after test I just took diagnosis as idiopathic and took Gabapentin which just made me sleep my life away. I made too much for VA to help back then, now when I retired I finally am being treated and they are really going for it to find cause. I'm lined up right now for 9 tests. I've had Lower Lumbar and EMG which I've had previously in Civilian Hospitals. Next it's a series of Labs including heavy metals, and a Cervical spine Mri followed by a Thorax Mri, I've gone down many rat holes in my own but after listening to each Doctor I'm thinking the expectation is Thoracic Myelopathy but I'm just guessing wish me luck as the progression has really sped up over this last year.
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1 ReactionHi,
Wondering how you are feeling + if you’ve received a diagnosis?
I am 67 w/ similar symptoms. Was diagnosed w/ MS in 2021, following a 3 1/2 yr diagnostic odyssey. After consulting 3 neurologists, numerous specialists, extensive testing … it was actually a 90° day + experiencing significant difficulty moving my legs that led to a brain MRI, lumbar puncture + blood tests and an MS Dx at Mayo AZ. Hindsight, it’s suspected I had transverse myelitis in 2017 when tingling started in my toes and over weeks elevated to my waist. At the time I tested deficient Vitamin D + very low B12, so I started oral D + B12 injections. As tingling lowered to just my feet, I assumed B 12 was helping. Later I learned it was due to relaxing remitting MS.
I’m familiar with Mayo neurologist Dr. Eoin P. Flanagan … with whom I’m assuming you’re consulting? Dr Flanagan is a highly knowledgeable neurologist and is very knowledgeable about MS, transverse myelitis, myelopathy, and many other neurological diseases.
If by chance you are still undiagnosed … Mayo does have diagnostic odyssey programs that can sometimes help with the diagnosis of rare conditions.
In my case, I was initially told
1) I had peripheral neuropathy, due to 5.6 A1c
2) I need to stop thinking so much about how I felt
3) I needed to stop seeing so many doctors
4) my symptoms were likely due to lack of sleep, and my mother passing away
But in fairness, these diagnoses were far more likely for a 63 yr old female … only 2% of people diagnosed with MS are diagnosed after age 60.
I’d love to hear from you + am here if I can be of support,
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2 ReactionsSounds like another unintentional "anti-feminist" & "agism" treatment to me.
I have two friends in their 80s. They have been diagnosed with breast cancer. I took my self off for a mamogram after hearing about them. I discovered that the rate of cancer goes up as you age. Yet they tell you to stop having mamograms after a "certain age." Why? Is it because they think you are going to die anyway?
Going through cancer treatments is not funny. Living with cancer when you could have done something about it is even worse.
Im 70 and getting biopsies for calcifications new after three years??
Vic