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Old 12-22-2004, 06:42 PM   #1
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Mom2Adam&Katie HB User
Post New here - I have a few questions

Hello there. I am new here, just found this board today. I am not technically diagnosed right now. I had an MRI that showed I have 1 lesion on my C-2 vertebrae. I had a spinal tap last week and found out today that they found 1) Elevated levels of immune system proteins and 2) 2 oligoclonal bands. Basically, my neuroligist told me that the spinal tap supports an MS dx, but since there is only 1 lesion present, he stuck with the original dx of Myelitis. He wants to take strategic action. So starting tomorrow, I will start a round of an IV steroid (unsure of the name of the medication). That will last for 3 days. Then, I will start taking Rebif injectibles.

My question is, has anyone else had a similar dx? Also, any tips/suggestions for the Rebif would be much appreciated.

Thanks in advance!!

Heather

 
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Old 12-22-2004, 06:55 PM   #2
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Re: New here - I have a few questions

Sorry, I meant to add that my symptoms have been numbness in my legs, hands, and torso. The leg/torso numbness started late September and went away after 3 weeks. The numbness started back up 2 weeks ago in my right side and left leg. The numbness in my hands has been there for the past 3 months.

Heather

 
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Old 12-27-2004, 02:01 PM   #3
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Re: New here - I have a few questions

Hi Heather,

I have had a similiar symptoms and was diagnosed with MS. I woke up 1 morning with tingling (pins/needles) in my left hand. I thought I just slept on it or something. Thought it would go away but it never did. I had a C-Spine MRI which revealed 1 or 2 lesions on the spinal cord. The neurologist referred me to an MS specialist who determined at that time that I did not have enough lesions in the timeframe to be considered MS. She mentioned it could've been the result of a viral infection. As time went on (3 months-untreated) a 2nd MRI revealed a few lesions in the brain (and by this time I had pins/needles in my feet as well). It was at this time I was dx'd. Spinal tap was neg. I had the same steroid treatment (Solu-Medrol) you are going to have. It really didn't help my symptoms much (maybe just took the edge off). So now I have been on Rebif for 4 months now. I had the expected side effects (flu-like symptoms, injection site irritation etc). But now I seem to be O.K. with it. I sometimes still wake up feeling like a truck hit me, but it usually subsides by mid-morning. I still have the pins/needles and understand this is not a cure, but hopefully this is the worst it will get.

Tips for Rebif:

Use a pain reliever the first few weeks to help with the side effects (or when necessary).
Take the injections at night (if you go to bed at 11:00pm, 6 or 7 should be O.K.) so you sleep through it.
Make sure you fully understand how to do the injection (after awhile it's so simple you do it just like brushing your teeth).
Learn to do it with and without the autoinjector.
Take the Rebif out of the refrigerator 1 hr before.
Use the service that actively monitors your medication (it's a little more expensive but is worth it IMO). They automatically call to renew the prescription so you don't have to be bothered.

Hope this helps.

Let me know if you have further questions,

Barry

 
Old 12-28-2004, 08:10 AM   #4
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angie81 HB User
Re: New here - I have a few questions

Hi
I was just diagonosed in NOvember and they are not starting me on any meds I was just wondering Why the doc didn't start me on any meds. I have 4 lesions on my brain and my doc told me that I surely had MS so why isnt he starting me yet. I had Optic Neuritis that is how they found out I had this. But now my left hand keeps falling alsleep like you that annoying feeling this last all morning everyday then gets alittle better but not much it has been going on for about 5 days now should I call the dooctor.
I was just wondering what you all had and why your doc decided to put you on meds.
Have a wonderful New years!
Thank you
Angie

 
Old 12-28-2004, 06:31 PM   #5
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Mom2Adam&Katie HB User
Re: New here - I have a few questions

Barry,

Thanks for all the great info! The IV steroid was Solu-Medrol (as you already knew) , and so far my symptoms haven't gotten any better. I was supposed to start them last Wednesday, but here in Southern Ohio, we got over a foot of snow so the nurse couldn't come out to my house. I'm on my second day, and aside from having the Heparin-thing in my arm ALL the time, it's been fine. I had a weird taste in my mouth during the treatment and for about an hour afterwards, but nothing unbearable.

Angie,

I guess each doc is different. I have symptoms of MS, but have not been dx, and yet I am taking meds for it already. I would call your doctor to have them explain WHY they aren't starting treatments yet. If you are comfortable with the answer, then that's great. But if you don't like their reasons, I would switch Neurologists. My doc told me he wanted to try to stop any more lesions from forming b/c of the location (on my c-2 vertebrae), and thought that meds were the best thing for me right now.

Good luck to you both!
Heather

 
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