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Am I making myself worse?

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Posted 6/26/2006 6:25 AM (GMT 0)
I am 25 years old and was diagnosed a couple years ago. Since then, I have no real defined relapse per say. Just good days and bad days and lately seeming to progress slightly to worse days.

When I was 19 years old in college I remeber coming home from class sooo tired, for no apparent reason. That was the first time I felt the MS. After that, and before I was diagnosed, I had a lot of fatigue and was diagnosed with plantar facitis for my foot pain...In my family I became "known" as lazy Sandy, the whiner.

Now, I know why I am so tired and irritable at times. But it seems like I am getting worse. At first I thought I would be able to work around the MS, knowing what is causing me to feel what I am feeling. I think about the fact that I have MS ALL THE TIME. I use my energy the best I can knowing it isn't going to be there tommorrow if I do certain things today.

I hear people all the time say that they have had MS for years and it's not till recently that their symptoms have gotten worse. In the first few years, what was it like for you? Did you forget about it and it went away?

I try not to worry about it. On my good days I can almost forget. Then the next day when I still feel good, I think I am going to be okay. But then next week hits and I can't get out of bed. This is common for me. Now I am starting to get more "aches and pains." My doc just put me on Baclofen (grrrr) for it. My neuro exam has gotten slightly worse, but not bad and I did have an exacerbation earlier this month.

I just feel like I worry too much and that is why I am getting worse. I feel like I am overly sensitive to "small" changes. I can't say that I have ever truely felt recovered from my first relapse, but have no reason to think I haven't, if that can make sense.

I honestly wish I was never knew that I had MS. When I was told I had MS so much in my life made sense. Now I feel like MS is consuming me.

Ok that is all. If you have any toughts I would love to hear them.

 

Posted 6/26/2006 4:27 PM (GMT 0)

Dear Sandy,

Sorry to hear your not feeling well, but how can a person dx with ms not think about it.  I say my having ms is like me having brown eyes, it is what it is.

As for the baclofen, has it helped with anything?  I found it just made me more fatigue and it did not help with the stiffness or back pain I have.  Hope in time your symtoms subside.

Sincerely,

vanesr

48yrs old dx in 1990

Posted 6/26/2006 5:38 PM (GMT 0)
Sandy,
I have only been diagnosed sice last Nov. but I am in secondary progressive. You may be in the same since you are just slowly progressing with few to no relapses. Baclofen works wonders for spasticity in feet and legs but really doesn't help back stuff, you might try zanaflex but it made me too sleepy.

Take care and keep us posted. :)
Posted 6/26/2006 10:02 PM (GMT 0)
Hi Sandy,

I hope that the baclophen provides some relief for you. My husbands symptoms started a lot like yours with bad fatigue in his late teen years and it wasn't until his late twenties that he started having other issues.

Having a progressive illness like MS is of course hard not to worry about. But remind yourself that it's not your fault you have it. Take each day one at a time if you have to and don't miss out on enjoying your good days because of worrying what may or may not happen in the future.

Let us know if the baclophen helps and please keep us posted on how you are doing.

Kimber
Posted 6/27/2006 12:32 AM (GMT 0)
Hi Sandy,
I was dx. last November, and like you I think about it all the time. I also have good days and bad days. Mostly just terribly tired all the time. I also wonder if I would feel the same today if I did not know I have MS. I guess we will never know. Hang in there.
Europa
Posted 6/28/2006 2:50 AM (GMT 0)

Thank You all for your reply!

I truely hope that I don't have secondary progressive! I am still too young (25 years old) =( I did fill the baclofen and find that it does help with the legs, but not with the neck! Very odd I think. I was noticing it last night. Surprisingly, I get MORE energy with the baclofen! But I am the same way with hydrcodone and sudafed, and coffee puts me to sleep...

Maybe... I had an exacerbation at the beginning of this month, with a partial recovery, but now I am still heading towards a "full" relapse. Does this happen with RRMS? Kinda like a double whammy? I hope this MS beast will hurry up already. The anticipation is killing me! Either relapse or just go away!

Anyways, having a more progressive form of MS is a concern I know that we all share. I do know that my initial MRI had a heavy lesion load (they stopped counting leasions when they reached 30! I see more then thirty on a single film when I look at it). I had an MRI last October and will have one again this Oct, but the report is MIA (long story) and the films were taken differently my last T3 MRI so my neuro can't read the MRI effectively without more info. Long and Short, I don't know if I have any new lesions since my DX in 2004. With all these lesions I am concerned about a more progressive form of MS.

Posted 6/28/2006 8:04 PM (GMT 0)
Hi Sandy,

Many people say that the baclophen does seem to work better for the legs than the upper body. Perhaps after talking with your neuro he could recommend a different type of spasticity med for your neck? Zanaflex is another med that seems to work pretty well for that for some, worth a try!

Lesion count in different for everybody. There are some folks that only have a handful of lesions and have a progressive form of MS and then those that have numerous lesions and are Relapsing-remitting. Doctors determine how you are progressing by comparing MRI's for new lesions and seeing how your symptoms are doing over time..are you getting new symptoms, worsening of ones you already have, are symptoms sticking around after flares instead of going away completely. Try not to worry, even if you do go into the SPMS stage, the treatment remains the same and there is a chance that it may never happen at all.

Kimber
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