Could this be TM

discuss symptoms related to arms, legs, torso and neck; solutions and what works for you

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Could this be TM

Postby navydad » Wed Oct 28, 2009 4:24 am

DAily it just sems I cant seem to figure out whats going on,, I have to wear two pair of pants to keep my legs warm,, pain is widespread,, I never seem to empty my bowels and bladder,, paion across the shoulder blades causing my arms and fingers to go numb, ,, some of it letts up when I lay down, but I just seeem to get weaker by the day, but even when I;m l;aying down everything seems to burn and twitch,, NO FEVER,, had numberous MRIS of the spine,, they tell me everything seems ok, tired of fighting doctors and afraid to go to ER for fear of just getting sent home again,, becoming very cold intolerant,, arms burn to the point I cant stand a breeze blowing on me,, any suggestions appreciated
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Re: Could this be TM

Postby StormyRenee » Wed Oct 28, 2009 4:45 am

Sorry you are having a hard time.Neurological issues can be truely frightening.It's soooo frustrating when you know somthings wrong but you can't get a diagnosis. Or you feel like the doctors are not taking you seriously.I know exactly how you feel. It took 6 months for me to get diagnosed with TM. You said you had spinal mri's but have you had a Brain mri? If not you definatly need one .Have you seen an actual Neurologist?How long has this been going on? Do not give up.You are your own best advocate. Try to hang in there.Take Care,Theresa....
That which does not kill us makes us stronger. Nietzsche
Diagnosed With TM 7/1/09
TM since January 2009
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Re: Could this be TM

Postby navydad » Wed Oct 28, 2009 7:20 am

I have been diagnosed with Sjygrons syndrome, not on antibodies but just on symptoms alone, In august I had a Chiari malformation operated on, the neurosurgeons felt thi s was causing the arm pain, but I ended up weith spinal menigitis two weks later,
I have had multiple MRis of the spine and brain,, and nothing shows up except the usul disc problems, through biopsy i was diagnosed with Peripjhal neuropathy in my legs, last winter I ended up in the hospital and when they did a MRI they told me at first I had suffered a stroke in the spinal cord,, then told me I didnt,, I have seen 3 neurologist,, one was horrible,, one was decent,, and the newest one said I had no reflexes left in the arms legs and wrist,, I cant lean back on anything,, it makes my arms feel like there cold,, I can barely shower without fallng over and have to have the heat on ,, if I dont i feel like I;m freezing,,when its 70 degrees in the house,, I am just about maxed out on neurotonin, its like eating candy,, does nothing,, tired of calling doctors who say nothing,, or get back to me when you see this new specilist theyline me up with,, I have tried being my own advocate, but I am tired of fighting the system,, and wondering at what point I just loe control of everything,, its a horrible way tolive,,
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Re: Could this be TM

Postby marieke » Wed Oct 28, 2009 9:36 am

Were you ever diagnosed with TM?

I think sjogrens syndrome is treated very differently from TM. Take a look here.
http://www.medicinenet.com/sjogrens_syn ... rticle.htm
Marieke RN (TM at T1 March 18, 2004 @ age 28 )
http://nurse-to-be08.blogspot.com/
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Re: Could this be TM

Postby navydad » Wed Oct 28, 2009 11:28 am

No, never dxedwith TM,, but it almost seems like the symptoms fit,, the pain,, the twitching, leg and arm weakness and the intolerance to cold,, even a slight breeze on me sends me over the edge
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Re: Could this be TM

Postby marieke » Wed Oct 28, 2009 12:04 pm

That is because ANY spinal cord injury will result in these symptoms. The damage to the nerves gives sensory and/or motor disturbances.

Transverse Myelitis is called this because there is inflammation to a section of the cord, in a transverse area (so straight across). In TM you will not find an obvious cause in the majority of cases, nor would you find a spinal stroke "blood clot". TM is an autoimmune reaction to "something".

If they diagnosed you with sjogrens it's b/c they found those specific antibodies in your system. In TM they don't find anything specific. I wonder if the spinal meningitis left you with nerve damage as well.
Marieke RN (TM at T1 March 18, 2004 @ age 28 )
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Re: Could this be TM

Postby navydad » Thu Oct 29, 2009 3:57 am

Do you lose sphrincter control also,, ?,, I can still move it but I;m not passing anything except small stool or just a mucos type stool,, and would it cause a fever,, I never run one
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Re: Could this be TM

Postby marieke » Thu Oct 29, 2009 10:10 am

If your spinal cord is affected and depending on what level, you can lose the ability for your bowel and/or bladder to work properly.

I lost both when I go TM @ T1, they never came back even though I can walk (my left leg stayed mostly paralyzed).
Marieke RN (TM at T1 March 18, 2004 @ age 28 )
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