Hey Everyone 🙂
Like a couple other people I have had several doctors over the years that think I had MS and not CIDP . However one one the times I went into the hospital they did an MRI and found lesions on my spine and it ended up being Transverse Myelitis . I didn’t have any on my brain which if I remember right is another symptom of MS . Maybe something else to look into ….. Hope it helps 🙂
Hope everyone is having a great Monday 🙂
Hello Everyone, I have been doing some more research and it may be that my son has transverse myelitis or GBS. His MRI/LP was normal but they did not do it with contrast and this is required and to be repeated if negative 2-7 days after the onset of symptoms. His clinical picture seems to follow this a bit more. He was at his worst at about 24 hours after this started which is typical for TM (transverse myelitis). He did recover more quickly than typical but bladder issues occur almost immediately for TM and I am not sure if that is the case for GBS…????
Even though he is doing much better…even able to jog now… not run well yet…. I am going to ask for an MRI with contrast at the neuro on Tuesday. I also have the names of a GBS expert and a TM expert and am going to ask them to consult with them.
TM gets me a bit nervous because it can be the first sign of Multiple Sclerosis but I need to stay calm. It is unusual in kids (but can happen) and since his LP and brain CT were normal, that is hopeful. 90% don’t have recurrence. Those who do, likely have MS.
I was wondering if anyone here was misdiagnosed with TM or knows much about it. I know that GBS and TM are mistaken for one another quite a bit. People with TM are often told they have conversion too… ARGH!
Hope you are all well. I will let you know how the neuro visit goes Tuesday. I really want an MRA (of the arteries) and a contrast MRI of the entire spine done in the next week…. wish me luck.
If they both come back normal, we will have to live with some unknowns and just be thankful for his continued progress. He was dry that past 3 nights!!