Quote:
Originally Posted by EricP
You don't take any DMD, injections, pills....anything? to slow the progress?
I was 35 when I got the official word that I in fact have genuine, RRMS, but had attacks before I got going on what was wrong, so I most likely had it active in me for some time, years before actually doing something about it. It took a fall from extreme dizziness to get into the ER and on my way to getting treatment and what was wrong.
Right now at 36 I feel "ok" I can't run all that well, but walking is good, no balance issues, no canes or walkers and all that, but my legs get tense real fast and I have to sit to let them unwind. I "had" a small incontinence issue, despite everyone telling me it probably won't happen 
My last MRI showed it was pretty benign ATM, but a few months ago I had a super attack... I got sick at the same time and it was a complete mess. I had to hold onto my 61 year old mom's arm to get around.... I was so tired and in pain that I didn't care what it looked like. Right now I am riding my bike all over the place, drinking lots of water(like you no soda) I eat tons of greens and I have also started on Fish Oil and Vit-D.
So yes...My MS is completey different than yours... I'm so sorry you have this much trouble so young already and I hope the MS in you will STFU soon and let you be mobile for a long time.
The scariest thing about having this crap is wondering if and/or it will suddenly decide to go haywire and take me down, full disability alley.
Hopefully it stays inactive and benign as my MRI has shown last time. |
I took Rebif from 09-11. I stopped because it was making me worse. My symptom list continued growing and I felt sick all the time. And I have never been put in a rrms category. My new neuro thinks im secondary and said if so no dmd will help anyways.
Its good you only have mild issues with mobility. Hopefully that area wont progress so you can stay on your feet longer!
When I was diagnosed I was terrified of the wheelchair as I was 21 and completely unable to walk for an entire month. The chair doesnt scare me as much as losing the ability to talk, being trapped in a fast spinning world, or losing eyesight.
I completely agree with you about not knowing when its going to attack. one day youre fine, the next you cant even get out of bed.
Also, if it turns out these episodes are seizures, thats even scarier because I know ms is what caused the damage in my brain that causes me to have them. And let me tell you what, these episodes are beyond terrifying. My insides feel horrible as they are happening and afterwards as well.
I can deal with pain. but the episodes are so scary that it makes going back to sleep quite difficult as I can feel that another one will happen. Theyve happened so many times that I TRY to stay as calm as possible but my insides are screaminh "youre gonna die go to the hospital!'
My mri is june 5th and said to take 3 hours. Not looking forward to being trapped in a box with a hammer noise pounding around my head for 3 hrs (it literally makes my brain feel so awful in certain areas but I suppose thats the point) I am however looking forward to new results so I can get some assistance in this crappy position im in.
I wish there was an 'off' button for ms and a 'resume to normal' button for us. I cant remember the last day where I forgot I had ms because I had no symptoms.. Its been years. I still put a smile on my face and understand I could always be worse so I am Very grateful for that