Help Please! New Diagnosis

[Ldybg20]

SOMETHING POSITIVE!!!

Just wanted to celebrate something positive. My friend was able to have the first dose of the plasmapheresis today I was so excited to celebrate moving a step forward. He also has been sleeping much of yesterday and today so maybe that will help his state of mind too. I am trying to keep his mother company and as calm as she can be. We also got an official name for his type of MS...tumefactive MS. I will have to do some research on that one as well. Thanks again for being my support group. I really appreciate you ALL!!

[Mamabug]

Thanks for the update. Good news!

~ Faith

[Kimba22]

That's good news! I hope he's now on his way to recovery. Thanks for the update.

Tumefactive MS is rare, so there's not a lot of information about it. Sounds like your friend's doctors are doing everything they can to help him. From what I understand, their goal is going to try to shrink that lesion.

Here's a few links for you, I hope maybe something you read here will be helpful:

http://www.msworld.org/forum/showthr...tumefactive+ms

http://www.msworld.org/forum/showthr...tumefactive+ms

http://www.msif.org/global-ms-resear...anagement.aspx

http://www.mstrust.org.uk/atoz/chemotherapy.jsp Hope this gives you an idea about why chemo may be used to treat MS, although it doesn't provide the all possiblities that are available in the US.

Praying for the best!

[golfore]

Ldybg20, Has there been any 2nd opinions? A quick google of this would make me question a quick diagnosis like this.

My heart is pounding because I recently, a year ago, I got a bad diagnosis about my MS that has left me permanently disabled.

Please, insist on another opinion!

If I missed something in the previous posts, I apologize.

[Ldybg20]

Thanks for the message Golfore. He was in the hospital for about 10 days before the diagnosis was given. He was originally there for stroke-like symptoms and an MRI showed lid ions on his brain and spine. That's when a spinal tap was done and the MS diagnosis discovered. He was diagnosed with EDEM and MS.

After 3 treatments of plasmapheresis he seems to be doing a little better. He is more alert, trying to speak but very hard to understand. He is crying a lot because he's frustrated but overall a big improvement on Friday from where he was Monday.

Sorry to sound clueless, but how long does it typically take to diagnose MS? He is unable to get a second opinion right now because he cannot leave the hospital in the condition that he is in. When I asked his mom about transferring him to another hospital she stresses out and says she is happy where he is.

He is now able to wiggle his fingers and toes on his left side where he couldn't do that before so that's a huge improvement. He also blinks when I tap in front of the eye he was said to be blind in but is having difficulties seeing from the side of that eye. If you don't mind me asking Golfore, what is your diagnosis?

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[golfore]

WOW, I wish you guys the best. It sounds like such an overwhelming situation.

I was dx'd with RMS in 1988. Pretty stable until about 2years ago. I developed c-spine stenosis. I noticed a little wobble when I walked. Within 4 months I was in a wheel chair. My hands were numb, burning, pretty useless.

I got a 7 level spinal fusion that should have been done at least 3 months sooner than it was. I can walk, take care of most of the things I need to. My hands are pretty useless, balance is not good. I have done a lot,,, I mean a lot of rehab.. I never thought that my long time specialist would blow the diagnosis.

I wish you both the best. Pick your MD'iety carefully.

[Ldybg20]

Update

Sorry I haven't posted in a while. My friend was moved a week ago to a rehab hosp last Friday. He is slowly gaining some strength back. He is still not able to communicate and is still very weak. Just the other day he was able to count to 5 and he is able to sit up in a chair for small periods of time.

As of yet, the doctors haven't said what his prognosis will be nor if a recovery will be made. We are continuing to pray that we see a change. He is just too young.

He is scheduled to return to the doctors mid-September. He cannot begin MS meds until blood work shows some level (sorry I forget) at zero then he will be able to start.

We are still not sure what to think but I wanted to update you all!

[Krysalus]

wishing you well

Hi

I just wanted to wish your friend and you well. I was reading through all the posts and my heart goes out to him, his family and to you.

It is nice to see some positives in the situation now. I hope he continues to improve.

[golfore]

Ldybg20, Good to hear some good news. I'll continue to pray for a good recovery.

It doesn't sound like MS,,,, but I'm no doctor.

Keep us informed. I think he will be OK!!!

[Ldybg20]

New Update

Sorry I haven't posted before. Here is the latest update on my friend: he will be discharged from rehab on Wednesday. He's been there for about 6 weeks. Since arriving, he has signed strength. He is now starting to talk (a lot!) and gaining strength back in his "paralyzed side". He is slowly gaining swallowing ability and began puréed food today.

Once discharged, he will be going to a nursing home as he isn't strong enough to come home just yet. He is still unable to go to the bathroom on his own and can only take a few steps before weakening. He is still very foggy in the mind and forgets the simple things (such as my name or his parents' names or the word "train" or other common names).

Golfore, I'm anxious to hear more about why you think it is MS. I only say that because my gut has been fighting me from the start.

Thank you all for the kind words and prayers.