Thanks once again Cherie,

The naproxen I am taking seem to take the edge off of the pain, I have been calling ehis doctor all day and now I finally got a real person to talk to and left a message, i know they have the lab results why are they not calling me bacK

Sometimes I think that none of them even CARE.....

Oh well, I will wait for a call back, i sure as heck am not going anywhere...

Thanks again Cherie, I will try and let you know what is going on IF I get a call back.....

Joe

Hi Cherie,

I am in SO much pain right now and the numbness is starting to really get to me also, BUT I have somewhat good news, the doc says that I only have the MS form of TM, it is TM caused by my MS, I have a new lesion on my C-3 and I THINK she said something like another one on my T-spine area?

So they are going to treat me with 2 more days of IV Steriods and see if that calms it down, I'll tell ya Cherie, this is NOT fun at all and i canNOT believe you went through this in a much worse form, I cannot fathom it being worse than this........You HAVE to be the strongest woman alive to have endured a more severe case of this........WOW!

hopefully I am on the downward end of this bout that they are calling an MS relapse....

I want to thank you once again for all the great insight you gave me, I really want to say SO much more but I am hurting SO bad I will write it late..

Thanks again Cherie, you are a great person!

:-)
Joe

Joe

I'm betting even a hug wouldn't feel good now.

Joe, my TM was probably no worse then yours, except that it went higher up the second time. Mine too was the "MS-kind", from C and T spinal lesions.

I know how hard this is, and how difficult even trying to concentrate on written word will be right now. I won't keep you reading . . . but want you to know that you are in my thoughts and prayers.

I hope the steroids help too. Feel free to PM me if there is anything you would rather not share publically.

Cherie

Are you ok, Joe?

Cherie

Joe - I'm sorry I am reading all this late. I do hope you are OK and feeling better.

Although they have never diagnosed me with TM, I have those spinal lesions that do the same thing. Cherie is correct in how things work with these dang things and provided you with some awesome information and advice.

I recently, in April, had a bad flare of a spinal lesion causing all sorts of chaos from the t-spine down. I was down, in bed, unable to move for about 4 or 5 days. Those were the worse and most painful. Slowly things start to return to my new normal. All in all it took about 8 weeks for things to settle down. However, the "crisis" time was about a couple of weeks.

Saying some prayers for you that you are starting to feel better.

tkrik, thanks much for the reply, it makes me feel good that this WILL go back to the way it used to be at some point...

Thanks much for the words....:-)

Joe

I was dx'd w/MS in 2005 officially (as they took my official dx in 2003 away from me) and then when I went to another neuro this last year, he told me he's not sure if I have MS but that I definitely had TM in 2003. Ok, great.

But my TM was nothing like what Cherie described or what is normally like TM--at least not from the way I experienced it. Mine lasted almost 1 year and I kept getting progressively worse over a period of months. It started on February 6, 2003, and I hit my worst in August 2003. Kept getting new sx, which sucked but kept me on my toes.

Did have pain in my feet which was helped by a really low dose psych drug. First they tried Elavil and then they gave me Pamelor as I had some side effects from Elavil. Nothing else touched the pain--not neurontin and not baclofen. Also ended up with bad restless leg syndrome during that time too.

Fatigue was a real killer. My worst day was when I went to get out of bed and put my feet on the floor but both my legs gave out on me. So I ended up on the floor looking up at the ceiling wondering when this was all going to end.

Never had any bowel or bladder problems, as is common with TM. And it took me probably until 2004 or 2005 for some of the sx to subside. Neuro won't tell me why that is--improvement is generally seen far quicker than I showed.

I've had exacerbations, two of which I sought IVSM for and was given it. But I don't complain to my doc regularly when things are going on, so the neuro at the well-respected hospital said that I'd never had any "exacerbations." Lovely...... don't complain, you don't get it logged into your records. You do complain they pin you for a whiner or tell you it'll go away on its own. Or they see you, tell you there's nothing they can do for you, and you've wasted time going to the doc for that. <sigh>

I truly hope, Joe, that things get better quickly for you. The neuro pain really bites the big hairy one. At least you're getting a little bit of relief from the naproxen. That's good.

BTW, having more than one episode of TM is unusual. So Cherie's the exception rather than the rule. Generally, most people only have one episode of TM. And it's not always associated with MS. It can be a precursor to MS, a stand alone episode, or occur when you do have MS.

Best of luck to you! Recover quickly and I hope you don't have any residual sx like I did.

Thanks Gazelle,

Things did no improve yet, I just got out of the hospital on Wednesday from a 5 day stay. Since writing this thread, I have been in the hospital on and off, filed for "short term" disability and am awaiting my Neuro to start me on IVIG therapy which scares me.

This is the first day I could even write anything. Ths is wearing me out.

Thnks for the response and thanks everyone.............This disease sucks...........:-(


joe

Thanks for the update, Joe.

You are almost 1/2 way through the worst of it now, and you WILL get to feeling significantly better.

Cherie

Hi lady_express_44,

1/2 way?, so soon, wow, that means in 2 more weeks I will be getting better?


Thanks for the encouragement, it has definately helped me.....:-)

Joe