Transverse Respiratory Failure?
AnonymousSeptember 20, 2007 at 9:16 am
As there is still some question about whether I might have transverse myelitis as well as CIDP I did some reading on it. Here is what Wikipedia says…
As it can strike at any level in the spinal cord I would assume that tranverse respiratory failure refers to demyelenation of the spinal cord at a point where it effects breathing, the higher cervical area. Just a thought…
AnonymousSeptember 20, 2007 at 10:40 pm
Thanks Julie, even my family doctor had not heard of it. The hospital gave no specifics as all the tests came back normal…………..this is all a mystery. Brandy felt exactly as she did 8 years ago when she was diagnosed with GBS yet the diagnosis has been TM with no real results from any of the tests performed. Her walk even confused the physical therapist today.
AnonymousSeptember 21, 2007 at 12:09 am
You say all the tests came back normal? What about the MRI? For a diagnosis of TM, I thought the MRI had to show inflammation of the spinal cord. Am I wrong? But if there is inflammation of the spinal cord, then the exact areas of inflammation could hold the key to deciphering why respiratory failure occurred.
If she was unable to complete an MRI before going on the vent, then I don’t know how in the world they can definitely say that it’s TM and not a relapse of GBS.
Maybe I’m just missing something?
Keeping you all in my prayers… 🙁
AnonymousSeptember 21, 2007 at 4:48 am
Ditto KarmaCat… the MRI would show inflammation at a certain level of the spinal cord. The other test he did was run the pin up my legs and then back. There is definately more numbness up to a certain level on my back and then the feeling goes back to normal. He said I may have some TM going on but it did not show up on an earlier MRI of my spine. From listening to my sister-in-law (internist) and my neurologist talk in one meeting I gathered they could both be going on at the same time. It’s an advantage to have a relative who is a doctor to go with your to neurologist appointment but I’ll be darned if I can follow much of what they are saying…;)
AnonymousSeptember 21, 2007 at 6:40 am
Exactly! We have had no CLEAR answers, it seems everything has been a guess. The nuerologist admitted he knew nothing about GBS except that it could not return. Hence my request for a transfer from day one. It seemed that the request for a transfer to another hospital offended them as the only notes on her chart that anyone read were………………you’re waiting for a transfer. I’m afraid, had I not requested copies of all of her records and test results we would never have known about the the two what appear small cysts in her spleen. (The least of my concern but still initially we were told the CAT scan of her lungs/chest area was fine).
What I know for certain, something isn’t right. Two weeks ago Brandy was just fine, walking, driving, working as a pre-school teacher and loving life. Today, her legs do not work properly and the only way she can get around is with the use of a walker and we have no real answers. I’m hoping today is the day we get an appointment with the neurologist at U of M.
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