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Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


Deb. Welcome to our club and our board...im sorry you had to be a memeber to meet us. We are a bunch of really great people, who can both commiserate and help you with what you are going thru, if only by telling you its okay to freak out, okay to be scared and okay to be overwhelmed. What it is NOT okay to do is to get depressed (for more than an hour!) or to THINK that just because someone else has something going on - that you are going to get it too.

Remember, MS is as different for each patient as a fingerprint. NO two cases are alike....so, do not be scared when you read about someone else having something which you DONT have- thinking its coming.....ok?

Now, want to tell you something. I just graduated with my MBA from an online University (capella) in March. I also have 3 kids, a needy husband, a HORRIBLE job which I hate, but its 30 hours a week, and we need the money- Im 40 years old, was diagnosed 3 weeks before my 40th birthday, and that was almost 10 months ago...getting the picture? I was taking 21 credits at school when this hit, had 2 more semseters....my job was driving me nuts. My kids are driving me nuts, my husband is TERRIFIEd of this disease and my doctor starts talking about putting me on Rebif immediately. I was diagnosed in less than 2 weeks, thats how severe my first initial welcome to MS was...I do not have a history of any Mono, or diseases which I am aware of...no history of MS in my family...
Oh, and did I mention I graduated with a 4.0? I love to throw that in there....the reason: To tell the world that ANYTHING is possible. DO NOT GIVE UP.

We have tons to talk about..but for now, I wanted to say hi. Tell you that you are NOT alone....remind you that you will have much support from us here on the board....and tell you that your doc did the spinal tap to rule out brain viruses (like Meningitis) and possibly even Lyme Disease, both of which mimic MS very closely. Also, Lyme is no longer proven to be negative by blood work, the spinal fluid can definately confirm or rule it out....ok? Dont panic.
Now, if you still feel headachy on Monday, I want you to call your doctor. A leak in the spine is not much fun....they call it a patch, and if you are leaking, it needs to be dealt with now. You shouldnt be in pain or have a headache 2 days after this test.....stay horizontal tonight, and call the doc on Monday, see if he wants to see you....ok? Caffeine, too, will help the headache. Coke, Coffee....

Oh yeah, one more thing...after being on Rebif for 8+ months, I have not had another severe relapse....minor ones yes. But overall, i feel much better. However, I will tell you, the first 3 months on the meds were awful. The flu-like symtoms they talk about kicked my butt...i was a nervous wreck. Then, one day I woke up realizing I had slept like a baby thru the night (after my shot) and they never came back. Should you go the rebif way, i have tons of info to help you thru the first few months....but, that is a personal decision, one you and your doctor (and family) should make together. None of them are "better" than the others, but some have advantages (like once a week, or 3 times a week, vs. every day) or advantages like being Sub-Cutaneous shots (under the skin) vs. in the muscle...youll need to think this through...but dont get overwhelmed. Youll find the right answer by researching and talking with nurses and docs. Also, be very careful what you read online....alot of "snake oil salesmen" out here with cures....if there was a cure, we wouldnt be having this discussion...and lastly, contact your MS society locally. Tell them you want to find a "newly diagnosed" group in your area...the people I found practically saved my life.

Big hugs....and relax. You will be okay...
Nikki





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