Sheena-

5 yrs of tests and they still aren't sure if I have ms or not. I had an MRI for migraines and they found about a dozen lesions.

I expected the doc to say my head was fine, it was just headaches. After that, they told me I might have so many diseases it about made me crazy. A year later, I was diagnosed with 2 serious disorders within a week of one another - C spine problems and a syrinx in my T spine.

I felt just like you do now. Unfixable, untreatable, and like I could be a vegetable at any second.

All those things are still true of my physical body. My mind has figured out a way to adjust to that and this ms limbo. I'm okay.

The people here have been a blessing in getting me to that point.


I hope we can help you through this. These folks know so much, so please ask anything. Just vent when you need to. Trust me, you can say what you need to say, it's okay.

It's okay not to be okay.



Cathy/Brain

hi sheena,

i'm SO glad you found us. welcome.
did your dr start you on any meds?
getting diagnosed (dx'd) can be a very scary thing. having support and just learning what you can about MS can be very empowering.

check with the NMSS website to learn more. and you can call 1-800-FIGHT MS to get the # of your local MS chapter. they might have some help and/or resources for you.

please keep in touch with us. we're here to help.

Yes, Dr. wants me to start Tysabri. But, I'm now very concerned about some of the things he said. Please view m next post and see what you think. I think I have been lied to. Thanks Sheena

HI Sheena
nice to meet you although i am sorry you have been Dx with MS. As the others have said, it is not the end of the world- the number of lesions does not corrulate with the degree of disability or the likelyhood of progression



I was dx in 2004 and had multiple lesions (too many to count) and was told that it was highly likely that i had had MS for at least a decade! i was already wheelchair dependant due other reasons so the thought of having another condition that was degenerative was difficult to take. Once i got used to the idea though and calmed down, things have not been too bad.



Unfortunately i have been through a tough period recently and have multiple relapses, i have been hospital(12 or 13 admissions) for the bulk of the time since october, i have had 5 lots of IV steroids and several courses of oral steroids. I have now been reclassified as "highly active Relapsing remitting MS" which i have been told progresses about twice as fast as the more usual type. Ty is recommended but i am not a candidate for medical reasons



Even with all this, the one thing i know is that MS is really unpredictable- the relapses could stopp just as quickly as they started and as for the comment about progressing twice as fast- twice as fast as what, there is no standard course for this disease. all you can do is try and stay as informed as possible, take care of your general health and try not to let MS lead your life. I know it is really scarey but it is not likely that you will wake up a vegetable one day, and it is not a fatal disease.



I must admit that i am surprised that your neuro is Ty at this stage simply because he does not know how aggressive your MS is and he will not know that unitl you have another relapse- at the moment there is no way of knowing how fast you have developed new lesions or how fast or slow you may develp new ones. I am not trying to make light of your situation but the other thing that comes to mind is that since the dx came as such a surprise, it sounds like any attacks you may have had in the past have had minimal impact to your day to day life- to me that sounds positive!!

Hi Sheena-

Just wanted to say Hello and welcome to the board

Glad you found us; this is a wonderfully supportive community. If you want, post away with your concerns, you will be sure to find some peace of mind in some form or another! Keep us posted

i am sorry to hear about your devastating situation. i just saw my mri and got the neuro kinda sorta diagnosis about 12 days ago and there are still so many WHY questions for me....hopefully this site will help you get through this difficult time--i know it is helping me! takecare, Mary