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Tuesday, April 15, 2008

An MS Story - POST HIATUS ( 3rd story in this series)

Submitted by: Stuart Schlossman
April 15, 2008


This (new) "Post Hiatus Story" now follows the Original
My Hiatus - the pros and cons and The Follow-up (2nd Story)

It now being 3 weeks since recommencing my medication, I want to again reinforce the importance of remaining on your DMD (Disease Modifying Drug). This mention, is not just for those doing MS medication but can also be told (and should be told) to anybody doing any medication for any disease, where-in a prescribed drug was designed to lessen the progression.


So now, let's go back to me and what is happening since re-starting my MS Medication.
Well the first two weeks didn't really show that I was getting better. But now, (3) weeks-in,
you can see and hear how I am beginning to climb back from the downward slope that happened from NOT doing my MS medication.

My humor levels have reclaimed the negativity. I again have the ability to get back into the public: going to stores, visiting friends and family. I am again able to look at my checkbook and decipher what the numbers (dollars and cents) indicate. My head (and brain) are not spinning nearly as much as 3 and 4 weeks ago. My right arm and leg are moving more freely and my vision is not as nearly blurred or seeing double as they had become.

Yes, all of the above negatives, came-about, when that BLAM effect hit me. To know what the BLAM is, you need to read (or re-read), "My Hiatus" .

I am far from feeling as good as I was in January. I am still experiencing bouts of vertigo, but now this is more just like nausea or feeling off-kiltered. I still have some problems with my hands (especially while typing). Could you imagine, me not being able to type?
My right leg remains feeling stiff. Headaches are still abundant, but much less clustered than before. Fatigue continues to be a factor each early afternoon and with the fatigue, comes the cognitive dysfunction.


Although I know that I was exacerbating just a few weeks ago, I opted to not push the issue to be put on Steroids. This may have been another bad choice, but after months of trying to lose weight, I didn't want to now be gaining weight.

Instead, I opted to get lots of rest and to ritually take my medication as needed.

Each of my stories concerning this error in judgement, needs to be circulated throughout the MS Community(ies) as we need to make sure that under no circumstance are you (or should you), stop doing your medication without the knowledge and guidance of your Medical Doctor.
Last year, it was reported that for those who stopped doing Tysabri, that they would experience an increase in disease activity.

After reading my essays (of what I have gone thru), I hope that you now realize that this same negative-effect (an increase of disease activity) can happen, regardless of the name of the medication that you are using.

Again I am on the correct path and I only hope that thousands of 'others' will be educated by what I wrote

You have my permission to pass along this vital information.



Sincerely,

Stuart Schlossman

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2 comments:

Anonymous said...

Hi Stuart and friends,

I've never missed a shot of my first Copaxone and since Betaferon, but I did try an experiment on myself with Lyrica.

I finally got approval for Lyrica exactly a year ago, 1/2008. I couldn't wait to get started on it as PAIN, neuropathic and whatever else, is one of my major, life-altering sx.

My main mental problem is my hysteria about gaining weight.

Ok, from Jan, 08 through May, 08 I put on a kg (2.2 lbs) or 2, but my clothes were fine, jeans fit as usual. Then some time between May and Sept I started blowing up like bread dough with too much yeast :-O . My wt went up and down with a span of 3 kg. I went over 60 kg around Oct 2008 and went into ataomic hysteria.

What did I try to do? As we all know, one of the side-effects of Lyrica is possible wt-gain. I read about people who put on over 100 lbs and started shaking in my proverbial boots. To try and reverse this gain I decided I would cut down and then out the Lyrica that gives me more relief than anything else at this point. Within only 4 days I was miserable. The pain level had shot through the roof :-( . I decided I couldn't torture myself like that and slowly went back on my daily dose of Lyrica.

Although I have my neuro's agreement to take up to 450mg / day, I work hard at not taking more than 300 mg daily. I'm succeeding at keeping my wt around 59 - 59.5 kg. I've had to get new jeans - 1 inch bigger than my norm. That upsets me terribly. I finally felt good with my body and then I had to go through menapause and Lyrica and mess it all up.

End of story and the lesson I learned: when meds are doing what they're supposed to do for you, DON'T MESS WITH THEM!

Just take care and feel good.

Peace & Serenity,
Maris in Israel

Anonymous said...

Hi Stuart,

My boyfriend of 2 years has MS and is living with me. He hates taking his daily injections. If I dont give him the injection, more so than not, he wont do it himself, he has gone days without taking it, him, advoidence, me just watching to see how long he would go without it. After reading your story, I will be more diligent in making sure, I or he gives himself his injection once a day.
Thanks for all you do.

Janice Guibert
jlguib@aol.com