Hey lilmama, I dont mind you asking at all, im 25 and dx at 21. I feel much older on my insides.

And big oops on my part... Not ekg, eeg. That will be the following day of my sleep study. I hope so much they can figure it out. I am pretty sure theyre seizures, even before the doc said thats what he thinks they are.

Unfortunately, my first and only mri was only of the neck and brain. But at least ill have those two to compare.

Mri sleep study and eeg have been scheduled for the first week of june. Im excited, mainly because I will have evidence for social security that im in crap shape for your average 25 year old.


I miss work. I wish I could go back, even for 1 day a week. I know itll be bad news bears if I try tho (prolly lose my balance and smack my head off a stainless steel table) so I try not to entertain that idea.

And driving!! Oh how I miss hopppin in the car to drive myself to the store..

You know, I wonder frequently, why the people that are lazy and dont want to pay their way through life arent the ones with ms. dont get me wrong, I wouldnt wish this disease upon anyone. But there are so many lazy people out there! I like being productive, I love accomplishing things! So why did I have to end up with this disease? I guess thats why they say life isnt fair..

When I was 25 I was helping my friends at the races, crawling under race cars, working the grind and doing yard work without breaking a sweat. At 25 you aren't even driving? I got a few more years up the ladder before it hit me, so I guess I am lucky.

I'm just so amazed at the range of age and the hardness it hits people... I've seen 35 year olds in power chairs, 52 year olds with MS for years and still walking fairly good...not good good, but they were walking.

I saw this 18 year old on youtbe wher eshe was cheerleading the night before and then the day after, she was in the hospital totally paralyzed with accute, sudden MS or something.

I feel lucky to have only mild symptoms as of now. MS hasn't hit me as hard as you.

I hope you feel better.

It does suck quite a bit. I try to stay positive, but realisticly, I am prepared (hopefully) for the worst. I hope to be in decent condition by my 30's, but seeing how ive progressed through the years, I dont EXPECT to be in that great of condition by then.

I do what I can to try and keep my ms in chill mode (except using a dmd).

I do yoga as my exercise.
Walk as much as I can.
Try to get the proper amount of sleep.
Cut red meat out of my diet -trying to cut out dairy, eggs, and yeast but thats super hard.
I only drink soda here and there.
And I take vit d, b12, b6, calcium, co q10, fish oil, flaxseed oil, and grape seed extract on a daily basis.

I feel that I am doing all that I can to keep progression at bay.. Apparently that just makes my ms even more angry with me.

It is absolutely 100% craziness how this disease affects us all in different ways.

Im more worried about figuring out what ms really is versus finding a cure.

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.

Glad you found a good "team member" in your doc.

Keep us updated, and take care of yourself girl...

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

I wish there was a "System Restore" function for my brain. Now that would be handy. I'm not sure when I would restore back to but I know I was doing okay in 2002. I still had symptoms but it was only the hug and it wasn't happening near as much as what I experience now. I didn't know what it was at the time and it only get really bad, like miss work for a few days bad, about once or twice a year since 1996. My tremors weren't as bad then either and I don't remember having spasticity, just occasional muscle tightness. MS was not even in the picture. I was healthy and full of energy then. In hindsight, I've had symptoms of MS since I was 16 but they were very infrequent, like years apart. So, yeah "System Restore" would be a good option to have.

Secondary right off the wagon? Does this mean there will be a steady decline with no "breaks"? When you turn 35, where do you think it will be at as far as disability? I got lucky as I did not feel the full force until my early 30's when I finally got an answer to my problems. To this day I can walk with a normalish gait, not run real fast, but I can get up and go without thinking about it, yet. I've never been in a wheelchair, not even from onset... I do feel lucky and I feel so bad for you.

Take care.

when anyone is diagnosed with MS, regardless of which type or the severity of disability~ don't you wish they also perscribed an "Easy Button" like on the commercial?

All in favor...