can TM get worse??

[HttWheel]

Hi,

I have had TM for 2 years now and I am worried that my condition is getting worse? I have gained all bladder control about a year and a half ago, but now recently it seems that my bladder is up and down......I now have to use a cath, but I can still void on my own a lil. What should I do or Expect?

I recently went to the doctors and they told me that my condition wasnt reverseable. What happened happened and I need to except that I am going to be disabled for the rest of my life.

Are the doctors wrong?

Please let me know,

-HttWheel

[lynnifer]

Hi Httwheel ..

Sorry you got TM - me too when I was 12. I'm now 33. There are plenty here.

It's good news that you recovered your bladder - I ended up completely paralyzed from the waist down and have been in a wheelchair ever since with no bladder or bowel control (I use crede for bladder, dig stim for bowel).

The good news is that you are young (in another post you said you were diagnosed at 14 and have had the illness for 2 years). In knowing that, all of the research information that I have read states that it is doubtful that you will have a second attack (that your TM will not worsen). www.myelitis.org

For those 40 and over, the information available currently states those people are at a higher risk of having a second attack - which would then lead to a diagnosis of Multiple Sclerosis, rather than TM.

Regarding your bladder - you said it has been up and down just recently (how long is that?) - have you been tested for a bladder infection? Many with TM or paralysis in general seem to struggle with urological problems so you are definitely not alone!

What did TM leave you with? I assume since you had regained bladder control that you are able to walk then?

[Sue Pendleton]

I recently went to the doctors and they told me that my condition wasnt reverseable. What happened happened and I need to except that I am going to be disabled for the rest of my life.

Are the doctors wrong?

Please let me know,

-HttWheel

Hi HotWheel,

I've been sicker than the proverbial dog lately so have missed a few days here. May I ask where these doctors are that said you will be disabled for life?

Also, do you take any medications for your bladder?

[HttWheel]

In response to ur questions: (Sorry im new at this website thingy)

[HttWheel]

Reply

Hi,

I have no bladder control now, i have to rely on caths. I started takeing backdrum (or however u spell it) and I had very bad side effects of diareahea (or however u spell it) and So they took me off of it.

I actually use a wheelchair, i have little muscle movement. I was lucky to have my bladder and bowls come back in the begining of my illness. I now have lost my bladder so I was just worried about getting worse.

To answer Sue, my old medical theropist told me that walking wasnt a possibility. His name is Doctor Segel and he is now located in Clevland somewhere (Im in Pittsburgh).

I have been tested for bladder infections and for kidney infections/failures and the tests show there is nothing wrong, it just stoped all of the sudden. I know its wierd <--- does that face look mad to u, cause im not mad haha

[Charlie 44]

I've had TM for 10+ years T10, regained bladder & bowel control (if you want to call it control). But still will have accidents, when it's time to go you better be close. I take one imodium tablet daily for the bowel control.

[HttWheel]

I have Acute Transverse Myelitis, and ive had it for 2 years. Does that mean I am TM2 ? just wondering

[lynnifer]

No ... it depends on your injury level (where TM struck you). For example, I am T12 ... thoracic (breasts to below waistline) at the 12th vertebrae on my spine.

Didn't your doctor go over all this?

[Charlie 44]

Httwheel
You should have a band around your injury level that feels like a rope tied around you. Mine is just above my belly button.
Have a nice day.

[HttWheel]

I have no control of my lower abs but I have control of my upper ones. But I have contol of my bowels and not my bladder. I can somewhat move my legs but not my hips thighs and but muscles. Lol, I have a bunch of doctors what type of doctor should I ask to get that information??

Im not quite sure what you mean about the hole rope thing, Charlie?

[anty]

Hi i have TM for 4 yrs now you feel like you have a really tight belt around your waist. Everyone is different i was left c-5 c-6 not walking but can move everything. any other questions feel free to ask anty

[HttWheel]

I actually do feel that, wow I thought it was just me, its right under my ribcage about 2 inches above my belly button. Here is a REALLY personal question, and U dont gotta answer it, I can feel down there, and when having sex I can feel it, I just cant orgasim....is that cause the guy isnt good or is it cause of my condition?? and if it is cause of my condition.....will I get better and maybe someday be able to orgasim??

[Charlie 44]

Now you know what banding is, about same place of mine. Now for your other question I'll let the girls handle it. As for us guys, I am able to orgasim every now and then.

[HttWheel]

haha ite

[HttWheel]

I've never actually had sex but I am saying in terms of being able to feel now...I was wondering if it actually ever gets better for the future