What a great place I've found here I was diagnosed with MS 2 weeks ago after having an MRI in January with multiple lesions. I've got incredible numbness, tingling, spasms, and overall stiffness. The numbness is on the left side but other symptoms seem all over.
I went through with the LP two days ago and feel a little overwhelmed at this point because just when I think I'm feeling better, I have to go lay down to get rid of the sudden headache. Although the neurologist said I have MS "without a doubt," I never really figured out why he still had to have the LP. He said it would be a good idea although sometimes they don't see anything and it's still MS.
The doctor said that when I come back next week, we'll talk about medications available. Once again, I'm overwhelmed. There is so much information out there.
My PCP had me on oral prednisone for 30 days, which ended that about 3 weeks ago. It's been rough sense then, like it was back in December when I evidently had one of my most severe exacerbations. I wasn't able to walk for about three days; I remember crawling to the bathroom. I want more prednisone! I know it's bad stuff; I've gained lots of weight and no telling the impact it has on the organs. But...I don't know how much longer I can take feeling like this. I'm trying to be strong, I have two teenagers, two jobs, and online university courses. I've been slowing down but just want the best for my kids. I don't know how much longer I can take feeling like this. I worry about losing my job and my house.
A few years ago when I felt this way, they did a mono test and said it was negative but that I was probably having a "flare" because I tested positive for the indication of an earlier infection. It seems these episodes have been going on for years when I look back now and think about it. Is it this way for you too?
I know that was alot--thanks for listening, whoever is out there. Any advice is appreciated.
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.
Hi there. My name is Holly and I live in South Orange County, south of Disneyland in CA.
I was diagnosed after a flare I experienced following a 5K run I had participated in (April 9, 2006). It did take a lot of time for the diagnosis to come (they tested fir everything else first), so I imagine you are kind of frustrated at this point.
Here's what helped me: Two books... Your First Year with MS and Women Living with MS (there's a subsequent book now, but the first one is the best).
I know you are overwhelmed, but do get out there and get your reading done on the injectable medicines that you will likely be taking. The sooner you start those meds, the better. (You will have fewer flare ups and those have lighter severity as the months go by.)
Keep in touch with this board ... it's a great thing to feel like there are others out there who know what you are going through. It's a good thing, normalizing I suppose. Oh yeah, and if you ever feel too strange, just send a shout out and say "has anyone else experienced ....?" You will be so happy with the results.
Wow Nikki, thanks! I appreciate the advice. We do have lots to talk about and for now, I'm drinking coffee and going back to bed. I'll call the dr. tomorrow if it's not better. I didn't even think about and just figured it's time to be miserable! (no way!) Thanks again, Deb
Stay horizontal Deb. Im off on Mondays and will have more time to write back. Write me if you have any questions in the meantime which I can address for you....
Otherwise, I always check in in the evenings and after work.
Hi Holly. Thank you so much for your reply. My brother lives in Irvin; maybe not too far from your location?
I used to cycle 20-40 miles at a time but stopped because the last time, I barely finished the ride. I figured out I can use my trainer downstairs and prevent some overheating but it's not the same. Ten minutes on a trainer is like 10 hours on the road.
Thanks for the book suggestionl; I'll check them out. I already feel better knowing there are other people out there who have experienced what I'm experiencing. I don't know anyone personally with MS except a friend of a friend and we've never met.
Thank you again for replying and I'm looking forward to more posting.
Irvine is VERY close to me; about 10 minutes away. My Neurologist is in Santa Ana, the next town past him as one heards towards the L.A.X. airport. Glad what I wrote can potentially help you. Just to encourage you, I have been on Avonex since December (one shot a week, intra-muscular); my flare ups have been greatly reduced. I wish I had taken them sooner than I started (about two months after I got the diagnosis, I finally filled the perscription).
Hi Nikki, just wanted to tell you that the headache is gone. Monday at work was bad; I found a therapy office couch and took 5 breaks throughout the day. I called the neurologist to ask about the headaches and increasing numbness in my feet. The nurse said the same thing as you about keeping horizontal and she scheduled another MRI. I just had the first one in January. I also have the first OT appt. and my second PT appt. tomorrow. Finally, next Friday I'll meet with the doctor to decide where we'll go from here with regard to treatment. I'm not sure that he's determined exactly which form of MS we're dealing with. Do you think maybe that's why he wants the MRI?
Yippee!! I obtained financing for my home and will close on the 18th!! That's good news because I've been worrying about it for months. I've been leasing on a year contract, which expired May 1. It's going to be mine so we can rip up the kitchen carpet, paint walls which aren't generic and my son will start digging and creating a peaceful Koi pond in the backyard. We've been envisioning it for the last year...
Thanks for your great enthusiasm about getting your degree. You're very inspiring and congratulations to you. I know it's hard work! I have final tests and projects to complete, but right now every muscle in my body has spoken something like "go to bed." Morning time is the best. I'm figuring out there's a certain and very finite amount of energy to expend each day. It's like a little box and I can take a little out at a time or I can use it all up at once and be exhausted by noon.
HI Deb. Im glad you are feeling better!! Congrats on the house and the Koi pond sounds great!! As for the "type" of MS you might have..nah, I doubt that the doctor is the least bit worried about that. 85% of people have Relapsing/ Remitting MS (R/RMS) and I have really never heard of anyone jumping right to secondary progressive right away. Besides, until you have had more than one attack, there is no way that they can tell. The progression of the disease is based on how many attacks you have, how you recover; if you recover fully or less than 100% and how much time you have in "remission" or if you have none and continue to get worse. Thats how they will decide how progessive you are. DO NOT WORRY ABOUT THIS NOW. The first thing to do is get you onto some MS therapy drug of some sort and take it from there..
Ill look forward to hearing how your next MRI goes...it will tell the doctor things like whether or not this was isolated- if the first MRI had things showing on the contrast, where they stand on that now...if new legions are forming....its all a matter of timing. Remember what ISNT on an MRI today, could show up tomororw!! However, what IS on the MRI today, explains alot about how youve been feeling these last two weeks....get it??? Relax..youre doing really well.