I have once again suggested/asked if there is a chance we could add a section for people diagnosed with Transverse Myelitis to this forum. However, I understand there must be sufficient activity and interest in participation to make it fly. So I thought I would ask . . .

Thanks. I know there are a few of us . . . but how many I am not sure.

http://neurotalk.psychcentral.com/thread49920.html

Here's one

Thanks, Kicker, that is where I learned of two other people here with TM.

As I mentioned on the other TM thread currently going, TM is very, very rare. There are about 1,500 cases dx every year in the US, which amounts to only an additional about 150 cases in Canada's population (less than 1,700 cases/year in all of North America).

If you look at those numbers over say 20 yrs, that's only something like 35,000 people have ever experienced it during that amount of time in history. And (as you mentioned) a good portion of those cases are quite severe, debilitating, leave a lot of disability, etc. Not too many of us interacting are on the forums ... I know that!

Some cases are caused by MS/NMO, and are therefore may be recurring ... but most people (fortunately) only every get one of these attacks (idiopathic, other diseases). If they are left very disabled, we seldom hear from them, and if they heal well they go on with their life. That's what I did the first time I had one and they predicted MS ... I went into denial instead.

Cherie

We have a Facebook page just for women with TM and have 144 members from all over the world: UK to Mumbai, India, Australia to Scotland. Oops . . .I just checked . . . sorry, some of them are caregivers. I guess I just thought there might be more here. I find the group very helpful, supportive, and with a great ability to make me laugh.

I would think that when most people want to know more about TM, they googe until they run across the TM Association site. They have a forum there: http://www.myelitis.org/forum/

A certain percentage of people with MS are never told that what they experienced was TM, especially if they are dx fairly quickly. In my case, I had my first TM attack in 1991, and they basically said "you may have gotten a virus in your central nervous system (spinal cord) ... but we are leaning towards this being MS (in the longer run)". I had had other weird symptoms previously, probably a MS attack actually, which was the reason they were leaning towards MS at the time ...

I wasn't told about "TM" per se', and I'm not even sure they had invented that name for it at in those days. When I had my second TM attack, in 2003, they had a name for it by then; Transverse Myelitis due to MS. Effectively it just became "MS" at that point though.

It's kinda like when someone gets Optic Neuritis, that might be all they are told at that point. ON can happen for many various reasons, so unless they have reason to believe it is DUE to MS, they often don't say that. (It is prudent if they do a MRI at that point, but many times they don't too).

So nowadays a person might only be told TM, if they only have spinal cord lesion(s), and then they wait to see if it develops into MS. The stats are so varying in that degree, and I've read everything from 15% to 85% of TM cases eventually end up as MS or NMO.

People with TM have many various diseases though, and depending on the cause, the results will be different. For instance, someone with MS/TM will likely develop brain lesions eventually and have different kinds of attacks in the future; someone with NMO/TM have a more serious longer-term outcome; but someone with idiopathic TM is going to be in a different (one time) situation. Also, the damage we are left with is varying, no matter what caused it.

So it is often even difficult to compare notes on what we are likely to experience, especially over the longer run.

Cherie

I am a new TM survivor. I got it in november 2011. I still have it. just got on ssdi. I have lots of problems still. People say I look good, but the truth is Im not. I can walk and talk and the Drs. say Im lucky for the extensive amount the lesions covered. No NMO yet. They said it was idopathic medication induced probably. I still have no feeling/sensation I get bad back aches, no energy, flu like symptoms, clumbsy, weak legs, tremmors, spasms, general weakness, I could go on. Is this normal? sometimes I think its in my head. I cant feel bowel and bladder but I have preasure and have no accidents. So you can guess what my libido is like. Im only 42. Anyway Im tired of people saying I look good.Probably more than you wanted.
thanks for listening.

rmp219,

Is what you are experiencing normal? Yes it very well may be; but what is normal for you may not be normal for someone else who has TM/MS/NMO. We all experience symptoms differently in ways that are unique to us, and these manifest according to the locations of demyelination, the type and the severity. TM seems to vary in severity and length of time that one has the effects.

For example, my experience is similar to what you are describing and it is hard to discriminate between what is an acute episode of TM, what is a flare of residual demyelination/neurological damage or both.
I've had a quite a few go rounds with MS/TM/ON and have been dealing with another ongoing relapse of TM/MS, possibly NMO symptoms since 2010. For me, the symptoms of TM are milder than for some, and they last for a year or longer instead of for a few months. Apparently that is my 'normal'.

To outside appearances, we may appear to be quite healthy most of the time. What aren't revealed or so obvious are the accommodations that are, and have been made to create that appearance.
Here are a few things to consider:
- Unless someone lives with us and even then sometimes, it goes unnoticed that there may be sleepless nights curled up in a ball with the pain and spasm of the 'hug' and/or legs doing their own thing.
- Others don't see that it may take us longer to accomplish what they take for granted, if in fact they can be done at all.
- Others don't know that it may take us hours instead of minutes to go from bed in the morning, to breakfast, to the shower and to the door so we can be 'out in the world'.
- It isn't apparent or known that throughout the day we might be dealing with the side effects of fatigue, medication, or the disease manifestations itself.
- Others can't 'see' that maybe we simply can't at times.
- Others can't know what it means to have a body fail or go into a sudden circus of pain and disability unless they have experienced that for themselves.
- Moreover, few can appreciate what it takes to work through these things when what they perceive is an apparently healthy person before them.
- Even if/when there are outward symptoms of gait disturbance or obvious paralysis, often others ascribe these to a past traumatic injury or stroke and not to a progressive, ever changing disease.
- It is all very frustrating and that too is normal.

Considering only these few points, it might be easier to accept that what may be perceived by others is only their perception. As such, it has little bearing on your reality.

Hang in there, look after yourself and do whatever you feel is best to adapt and control symptoms.

With love, Erika

Thankyou for your reply. I figured everyone was different and things were not normal. Its just nice to hear it from someone else. The horrible pain I have with waking up and not sleeping makes me a little stupid at times. Thanks again.

"The horrible pain I have with waking up and not sleeping makes me a little stupid at times."

Ah yes, unfortunately those things can also be quite normal with this stupid disease.
Feel free to vent, whine and complain. We do understand.
With love, Erika