GBS then Transverse Myelitis
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May 14, 2007 at 3:44 pm
Does any one know, or has any one been first diagnosed with Guillain Barre and then the diagnosis changed to Transverse Myelitis?
I was first stricken in Nov 2002, paralyzed from the waist down, given high doses of steroids, then started on IVIG….over the course of a year and a half, many doctors, lots of tests, and a total of 30 IVIG’s later, I was told that it was Transverse Myelitis.
I had a flu shot initially and lost the feeling 12 days later. I understand the government has admitted that the flu shot can trigger GBS, but they do not admit to TM.
Does any one have any thoughts or answers???
Linda Garrett in Ohio -
May 14, 2007 at 7:40 pm
I did find some info connecting vaccinations to Transverse Myelitis, but I’m very surprised that this is a condition that wasn’t caught earlier. Did you have an MRI of the brain and spine when you were first being dx with GBS? Because TM is a condition involving spinal cord inflammation, it seems like an MRI would have revealed that quickly. Did you present with back pain during your initial dx? That also definitely should have prompted your doctors to do an MRI, CAT, or X-ray of your spine just to rule out things other than GBS.
Wow, I’m sorry you’ve had to suffer with this misdiagnosis for so long. You must be beyond frustrated right now thinking of how long you’ve been barking up the wrong tree! At least now you have a clue what’s been going on with your body and hopefully can more appropriately address your symptoms as a result.
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May 14, 2007 at 8:05 pm
[B]Hi Linda,
One of our members Jethro has Transverse Myelitis, Maybe you could send him a private message and ask him some questions. I do believe he was diagnosed first with GBS, then it was changed to TM.
My friend’s son has TM and his treatments are IV Steroids, which usually make him feel better until he needs treatment again. Similar to those that get IVIG, helps until another treatment is needed.
Linda, did you ever call that lawyer that I referred you to? Hope that all works out for you.[/B]
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May 14, 2007 at 8:22 pm
I had the opposite — first a TM diagnosis and then changed to GB. I guess they must present similarly and we all have such unique presentation of symptoms!
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May 15, 2007 at 4:09 am
Linda, I am sorry to hear that you have persistent T.M. Both T.M. and G.B.S. are differential diagnoses at the onset of illness as both produce sensory, motor and autonomic symptoms. The sensory changes in T.M. remain set at the level supplied by the CNS below the level of the lesion, whereas in G.B.S. it changes. M.R.I. scans are not always positive in T.M., the proven vaccination triggers are for Smallpox and Rabies. I hope you recover, DocDavid
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May 15, 2007 at 9:20 am
Thank you to all who have responded…4 1/2 years later, I am recovered about like I was at a year…The only thing I have constant problems with is balance, and nerve pain, along with bowel and bladder problems. I walk with a cane, but can drive, and am able to work, part time, a receptionist job, and am so thankful I am no worse than I am, I learned to walk again…I had all the tests mentioned, MRI’s, several of them, Cat scans, X rays, myelagram, urodynamic test, brain wave testing, Emg (3 times), Spinal tap…you name it, I had it, but I was still told from all the different doctors from the get go, that it was GBS. Then low and behold, my neurologist decided it was TM, then I was sent to Cleveland Clinic and they seemed to agree, so that is when I stopped…I finally had 2 doctors agree on a diagnosis, and right or wrong, I decided to stop……the not knowing was driving me bonkers. It is funny, that my local neurologist diagnosed 2 people that I have spoken with, with TM right away. He always told me that we usually don’t see bowel and bladder problems in GBS….Gee, usually???? I wish someone would tell me if I have had both…I try to be somewhat involved in both of these groups, just not sure where I belong…ha ha ha….I’ll stay with both!!
Linda Garrett 🙂 -
June 5, 2007 at 8:51 am
Linda,
The CSF should have shown oligoclonal bands with TM. If the CSF was absent of oligoclonal bands, and all other cell levels normal, then it would appear you may have GBS (if they checked for the bands). Influenza vaccine has caused both GBS and TM. However, evidence of TM may be seen in MRI’s too.
I got a flu shot, then got GBS, then also got TM. Mine didn’t change from GBS to TM…I had both. The GBS progressed to CIDP and the diagnosis of CIDP and TM was made by the Chief of Neurology, and Professor of Neurology at the University of Louisville…at that time.
Best regards.
Jethro
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June 7, 2007 at 1:34 pm
Linda,
I too was first Dx with GBS but was told it might be TM. I got both steroids and IVIG. I just didn’t want to believe it was TM because of the poor recovery rate.
5 plus years later I’m sure it’s TM. I was paralyzed to the chest and in a wheelchair for a year. I got TM 10 days after a knee surgery. I too have the same residuals that you have!!!
I would like to hear from you, if you like, please e-mail me and we can compare residuals and what meds we are taking and how we are coping. Maybe we can help each other.
Take the rest of the day off,
Rob
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January 4, 2018 at 6:30 am
Yes me, 8 days in the hospital & just changed to transverse myelitis. I’m overwhelmed & lost on where to begin & I need to get into acute rehab as soon as possible in Los Angeles..
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