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Old 01-09-2010, 05:13 PM   #1
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getting used to MS but questions

Hi all, it's been 2 months since my diagnosis. Getting used to the Rebif (still feel a little yucky the next day but getting better). Nikki , thanks for all of your advice, it did help.
Okay here's my question. I am starting to get a handle on how I feel and dealing with MS. Yes I am tired, have pains and some cognitive issues. But with the meds I am on I am thinking yeah, I can handle this. Then I read a post someone posted about fibro and MS and how MS is progressive. So is it going to get worse? I hate the unkown. I thought I understood that with this Rebif I was stopping the progression. The damage that is done is done and won't repair but I won't have more problems. Is this not true?
I know I stilll deal with different sympotms daily like a "hug" for a few days, or tingling pains somewhere, blurryish vision, but will I wake up unable to walk??

I just went to my appt last week and didn't think to ask this. I don't go back for 2 more months so any input would be great.
Thanks!

 
Old 01-09-2010, 08:21 PM   #2
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Re: getting used to MS but questions

Hi Sweetie. It was actually ME that posted about Fibro and the fact that unlike MS, fibro doesnt progress....however, youre also not seeing the whole picture.
Here is the statistics. In this day and age- the age of Interferons, Copaxone and Tysabri- patients who are on MS drug therapy have less then a 20% chance of ever changing from relapsing- remitting MS (the type you and I have and 85% of the MS community has) to any other form of MS.

The more progresive types of MS mean that you do not have any type of remission, the disease continuously gets worse. This is NOT what we have. We have r/r, meaning, we will have days, weeks even months of remission where no real MS issues. Will we wake up one day and not be able to walk? NO! Not a chance...however, there is no guarantee that a new lesion wont develope, and a new symtom might happen- this is why we get MRIs every 6 months or at least once a year, to monitor the drugs we are on and see if anything has changed.

Good news- in 4+ years of being on Rebif, not one new lesion, not one new symtom. In the first 6 months, I did develope optical neuritis and thought that the drug wasnt working for me; however I was wrong....it takes 6 full months for the drug to actually begin to work...so, until youve been on it for 6 months, anything is possible- but once you get to that point, youre doing EVERYTHING possible to stop progression and keep this from turning into future problems. You have to trust the drugs, trust your doctor...and right now, trust yourself.

Youre doing great, and its not uncommon to worry- and certainly not unusual to ask the question you asked- but trust yourself. Youre doing everything right! 4 years into it, and going strong....working 50 hours a week, doing my doctorate, and working with support groups- I volunteer and do charity work- and have a full household, with kids and a husband. Dont worry yourself into an episode, ok?? Youre going to be ok, too. I promise.

hugs
Nikki
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Old 01-09-2010, 08:27 PM   #3
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Re: getting used to MS but questions

With MS the word to use is MAYBE. Will your MS become progressive? Maybe. There is no way to know. Stay positive and optimistic. You could go 30-40 years without a problem. I am progressive, and some days are slow, but each day is a blessing. It is all in how you look at things. MS is not fatal and as long as you refuse to surrender, life is manageable and livable. I count on each day anew by the grace of God.

Do not accept any pity-party invites no matter how the invites arrive.

Will you wake up unable to walk? Again, Maybe. But if you have your "ducks in order" this needs not slow you down. I have a cane, a service dog, a pair of forearm crutches, a walker, a power chair, and a vehicle with hand controls. I am ready for whatever might come my way. If your symptoms come and go, if there is a problem with your legs, I would think that it would be as long as other problems you have had.

Tom Landry, hall of fame football coach, had a clipboard on which he had a play for every possibility. This is a good example for MSers, I think. If you sit down and create your "what if" scenarios, when the "what if's" come your way, you will have a "play". If the "play" you planned falls apart, no worries! If you have tried, then you have done the right thing and you can erase the failed play from your clipboard.
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Old 01-10-2010, 08:14 PM   #4
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Re: getting used to MS but questions

Thank you guys. Had a bit of a panic moment. I hate the unknown. Don't know what I would do without this board!

 
Old 01-13-2010, 08:08 AM   #5
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Re: getting used to MS but questions

Hi bhmomof2...I can relate to your panic and fear of the unknown. I had my official dx in Sept. 2009 and I continue to struggle with this part. I have learned many valuable things on this board and will continue to check in frequently. Everyone is very supportive! My fear like everyone else's is that someday I won't be able to walk and I will lose my independence. I try to keep reminding myself that I am wasting good days (having the ability to get around) and great times with my husband and kids by worrying of what may be. My brother-in-law(who has had diabetes since age 24) told me..."don't fear what you can't change and have no control over--enjoy the here and now stuff" ...and I feel there is alot of truth in that. The good thing is hopefully the Rebif is helping me to have some control over this disease. I find it easier to have a more upbeat and positive attitude on my good days...if my leg feels "weird" then it sets me into panic mode of "Oh My...what am I going to be like in 10 years". But we have to take one day at a time and keep our chins up!! Enjoy your kids!! Are they young? Mine are 11, 9,and 6...so they keep me busy!

Have a great day!!
Kelly

 
Old 01-13-2010, 03:53 PM   #6
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Re: getting used to MS but questions

Thanks Kelly, I seem to do okay with the anxiety most days and really seem to be dealing with everything. I just have a panic moment every so often. My daughters are 17 and 14 so most days I don't even have time to worry about MS.
I am hoping for the best with Rebif. It hasn't been as bad as I thought so that is good news.
Thanks for the support. I couldn't do this without yall.

 
Old 01-13-2010, 05:48 PM   #7
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Positivethinkin HB User
Re: getting used to MS but questions

Quote:
Originally Posted by teeth1992 View Post
Hi bhmomof2...I can relate to your panic and fear of the unknown. I had my official dx in Sept. 2009 and I continue to struggle with this part. I have learned many valuable things on this board and will continue to check in frequently. Everyone is very supportive! My fear like everyone else's is that someday I won't be able to walk and I will lose my independence. I try to keep reminding myself that I am wasting good days (having the ability to get around) and great times with my husband and kids by worrying of what may be. My brother-in-law(who has had diabetes since age 24) told me..."don't fear what you can't change and have no control over--enjoy the here and now stuff" ...and I feel there is alot of truth in that. The good thing is hopefully the Rebif is helping me to have some control over this disease. I find it easier to have a more upbeat and positive attitude on my good days...if my leg feels "weird" then it sets me into panic mode of "Oh My...what am I going to be like in 10 years". But we have to take one day at a time and keep our chins up!! Enjoy your kids!! Are they young? Mine are 11, 9,and 6...so they keep me busy!

Have a great day!!
Kelly
I just wanted to say that I agree with what you have said above. It really does help to use this board to help you through MS. I really appreciate everybody's helpful posts. Thank you soo much for making a difference in my life. It is time to enjoy the rest of my good day today.

Postivethinkin,
Brenda

 
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