GBS vs. TM (Transverse Myolitis)
AnonymousAugust 10, 2008 at 11:28 pm
I am just wondering if anyone out there has been diagnosised with transverse myolitis or if it was ever ruled out during anyones diagnosis stage. My daughter Abby (she will be 6 next week) who has been affected since September 2006 has a dual diagnosis, which is very odd, I know. To be honest, everything that I can read and understnd she does fit both diagonisises, yet doesn’t fit either perfectly. The transverse myolitis association wants me to get a consulation from John Hopkins who are the leading researches in TM. Just wondering if anyone has run into this.
AnonymousAugust 10, 2008 at 11:50 pm
Hi Abby! Welcome to the site and I hate to hear about your daughter being sickly. I really don’t know much about that illness but hope someone in here can be of help. Hang around and keep checking your posting. I’m pretty sure someone in here can be of help.
I want to cry when I hear of children coming down with sickness! It hurts me so much seeing a child suffer. I know that John Hopkins is a good hospital and they do wonders. Know a few people that went there and their hospital is really good.
I wish you my best and hope things turn around for your daughter! Many cyber hugs heading your way!
AnonymousAugust 11, 2008 at 1:41 am
I did a little research and found this clip about a John Hopkins Project. You may already know about it
[ [url]http://video.google.com/videoplay?docid=3162358514583903237[/url] ]
Do a copy and paste to you browser. I didn’t find anything on [I]transverse myolitis [/I], but I did kind information of transverse myelitis. Im not even sure they are related, but I though I would pass it on
AnonymousAugust 11, 2008 at 2:14 am
Not sure if you are referring to T. Myelitis…..if it is, then you’re right about it being odd. there are a number of patients first being diagnosed with TM first and rediagnosed with GBS and visa versa. The fact that she fits both, but not either perfectly must be so frustrating. I think if the docs at Johns Hopkins can speak to each other i.e. the guys specializing in TM and the ones who know GBS so well (Dr. Cornblath and his ‘gang’), then you would have the best of both worlds! I think it would be a wonderful idea to see them, let us know if you get an appt.
AnonymousAugust 11, 2008 at 8:54 am
Yes, for a long time they suspected I have/had both, something about how abruptly the numbness stopped at a certain point on my back – below one disk couldn’t feel a thing, above it I could feel more normally. I never really got what they were saying about that -it was a group of doctors examining me and talking to themselves saying “you see how this and that” and frankly I was exhausted so wasn’t able to pay attention to what they were saying. However, since I have been getting IVIg treatment there has been no more discussion of it, I have no more numbness in my back and my Hopkins doctor has stuck with the CIDP diagnosis. I’m heading back up there Friday so I’ll ask him what ever came of the TM diagnosis… you’ve got me curious now.
Is your daughter getting treatment? I feel for her, I hate to see kids so sick, give her an air hug for me as I’m sure a real one probably hurts.
August 11, 2008 at 9:46 am
I was wondering if you recieved the fax w/ the info pertaining to ivig and tm? When Kevin was first dx., they tested for tm to be ruled out. It was a very confusing horrific day, but I think I remember something about a particular nerve maybe in the index finger that they tested w/the ncv/emg. I think the doc even said George Bush SR. has it. I could be wrong, because by that time I was already taking xanax!! I will try to research. Good luck to Abby and yourself.
August 11, 2008 at 10:17 am
I looked on line, and googled gb sr and transverse myelitis. There were several connections to the two but I could not pinpoint anything, but it is weird how things happen for a reason. As I was searching I came about a post about some presidential candidate stuff for Bill Richardson and there was a picture of a beautiful girl in a wheelchair. I read the story. It was a girl named Cody Unser, Al Unser’s daughter, the race car driver. It seems as though she is an advocate for Transverse Myelitis. Maybe you could contact her and see if she could help. I hope you get some answers soon for the dual dx. We will pray for Abby and her family.
Dawn Kevies mom
AnonymousAugust 13, 2008 at 12:40 am
Thanks for the replies. Julie, interesting how you heard the same things that we did. Who do you see at Hopkins? Just curious. Dawn, I did get your fax, although I haven’t read it with my full attention yet, as my husband handed it to me yesterday…MEN!
My daughter is almost 2 years out from her diagnosis. She is absolutely amazing. She walks with forearm crutches, however uses her wheelchair for distances, like at the zoo, mall etc. She has adjusted amazingly well and amazes all who see her. She is insisting on beginning kindergarten at our 100 year old school that is 3 story and does not have an elevator, instead of taking the easy way out of attending the one story school in our district.
I guess that I have not really investigated the whole dual diagnosis too much, as it really doesn’t impact anything at this point in time. The prognosis and treatment is the same…physical therapy. We have had many physicians tell us this, as well as people in both associations. This is just part of our “normal” life now. We don’t dwell on her disabilities, we focus on making her life normal, treating her as we do our 2 boys. She rarely mentions the fact that she can’t do something, and is so psyched to start school next week…”real school”, as well as her 6th birthday.
Thanks for the input, it is all appreciated!
AnonymousAugust 13, 2008 at 10:02 am
Kudos to you and dad for creating a life that supports your daughter, Abby, to be as independent as possible. It is so great that you all see the abilities and not the disabilities. And Abby sounds like an awesome well rounded young girl who is going to face every challenge with grace and courage. Good for all of you. I wish you all well, and Abby is going to love her school!!
AnonymousAugust 27, 2008 at 1:56 pm
I too was first diagnosised with GBS, but my Doc thought it might be Transverse Myelitis. It was later confirmed to be TM because of the symptoms. I have leg reflexes, bladder and bowel dysfuntion, banding feeling in chest and not as good of recovery. 1/3 have no improvement, 1/3 partal improvement and 1/3 full recovery with some residuals. All symptoms of TM and not GBS.
If I can be of farther help, please e-mail me.
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