does anyone know about transverse myelitis?

[mamiJ]

about 6 months ago, I started to get pins and needles, tingling and random pain. It kind of went away and came back two months ago.

for a week now I have had major weakness, chest pressure/pain, all over pain and my left leg doesnt move correctly.

at times it feels like it is going to give out from under me and at other times, it just hurts.

when I went to neuro, he said "possible demyelinating disease" but I have not had an MRI yet, only an EEG, and don't have those results.

when I look online for transverse myelitis, I only find a little info.

I'm getting worse every day. I am having a hard time typing and my walking is not good.

does anyone know where I can get more info?

thank you!

[Udkas]

Hi there,
I hope that you work out what your problem is soon, being in limbo is confusing.  Be well, cheers,
Udkas.

[mamiJ]

Thank you Udkas for your reply.

well, I no longer think this may be my problem because I am able to walk 75% better than I was last week.  I seriously thought I was going to wake up and hit the floor because my leg weakness kept getting worse.

Thanks for the information.  :)

[Udkas]

Hi and welcome to this medhelp forum,
I hope I can help you with your questions on Transverse Myelitis, Binx67 gave me such a lovely introduction, not sure if I can live up to it, but if you have any specific questions on TM feel free to msg me or send a note or ask on this forum.

Transverse Myelitis is actually quite rare, Transverse means across one entire segment or section of the spinal cord and myelitis is just a word for inflammation of the spinal cord.

Most people only have one episode of Transverse Myelitis (TM), but it can reoccur but usually when this happens it is due to the TM being secondary to another underlying disease, like TM can occur as a result of Lupus, so secondary to the Lupus, ie: the Lupus is causing the inflammation, or TM can often be the start of MS, if you have an MRI and it shows brain involvement  (lesions in your brain) you have about a 70% chance of developing MS, it may even be higher than that.  If you have only spinal cord involvement the risk is a lot lower.

TM can sometimes occur because of a vaccine or as an autoimmune response to a virus and sometimes they cannot pin point any cause. To be diagnosed they would need to do a MRI of your spinal cord, TM lesions are usually found in the thoracic but can be located anywhere in the spinal cord.  They would also most likely perform a LP.

There are different types of TM as well, you can have an "ACUTE" episode where your symptoms and your disability can come on quickly or sub acute where they symptoms can occur more gradually over weeks. Recovery from a TM attack can be slow, it can take up to two years and if you still have disablity or on going problems after that time they are likely to remain. Usually if you are going to improve you get improvement in the first 3mths but as I said it can take longer, no two cases are same as everybody's lesions can be different and in a different spot.

If a doctor suspected TM you would need to be seen by a neurologist promptly (straight away), some doctors use plasma exchange for really bad cases and some use IV steriods, but there is no real treatment for TM other than managing the symptoms.

TM is usually associated with leg problems, weakness, and quite often radicular pain, and bladder problems.  Generally the doctors can see a clear sensory line on examination. If you are having neurological symptoms you need to have full bloodwork  done, a MRI, possibly a LP, nerve conduction tests.  TM is diagnosed by MRI, and sometimes LP.

Good luck with getting some answers, I hope this has given you some information, if you have any more questions, ask away.
Cheers,
Udkas.

[illinwithoutacause]

hi mamij and a warm welcome to limboland.

i read your introduction and it sounds like you have been dealing with an awful lot for a long time.  i am sorry about that, but you will find a lot of amazing support and comfort here.

there is a member of this board and the MS board named Udkas who is more or less our resident transverse myelitis expert and an all around lovely person.  i am going to drop her a note to contact you.

i think following up with your neuro makes good sense given your symptoms, but since you have an abnormal ANA, have you considered an evaluation by a rheumatologist?  during the course of my own journey i have learned that a lot of other autoimmune diseases besides MS can cause the neuro-type symptoms you are experiencing.

again, welcome, and i hope you get some answers very soon.

best wishes,
binx