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Old 03-05-2010, 09:35 AM   #1
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thumbsup80 HB User
Hi

hallo every one, this is john, new to this community,
just wanted to say hi to everyone

 
Old 03-05-2010, 11:05 AM   #2
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MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Hi

Hi John and welcome. Do you have MS? if so, how long have you had it and what are you comfortable sharing about yourself? Its nice to see a new face...
Nikki
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Old 03-05-2010, 11:36 AM   #3
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Re: Hi

Hi John and Nikki,

I too and new to this whole thing. Got my diagnosis in December. 30 years old, been an athlete my entire lift to lead to this...disconcerting. For those involved--I have a few quick questions:

1. I've now been on Copaxone for a month. No real issues with it other than about 3''-4'' large red welts on each injection now. The first two weeks, nothing at all. Thoughts on that from anyone?

2. I've had some rough spasticity in walking the past few months--from my initial MRI's it would have seemed I didn't have many legions, etc from my very first attack. However, I'm now 3 months out from that first attack, been on Prednisone twice and the Acthar once already and I'm STILL having a pretty hard time walking/running/balancing/etc.. Thoughts from anyone?

3. With regard to excercise--does anyone have a routine that really makes you feel great? I've been a runner/biker/swimmer/general athlete my entire life, but the past few months, I can't physically run so that is VERY limiting. Tried yoga a bit, but can't balance well enough to make it worthwhile yet. Swimming is up next. Anyone doing some potent excercise that is helping?

4. I've had this on and off 'swelling' feeling in my head. Not a headache and doesn't affect vision/memory/thought process etc...just feels like my brain is swelling/pulsing. I am curious to know if anyone else has felt this and/or talked to the MD about it?

That's all for now I think...I'd appreciate any thoughts/help anyone has to offer. All is all, this whole thing hasn't been so bad.

 
Old 03-05-2010, 12:54 PM   #4
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Re: Hi

All is all, this whole thing hasn't been so bad. Dude, thats about the best attitude you can have!! Congratulations!! It usually takes people years to get to that point. Im very impressed.

Welcome to our family of MSers- and the most support youll find anywhere! I was 38 when I got dx- and from the sounds of it, with many of the same issues. You asked quite a few questions and I can only answer a few of them, but hopefully more will join the thread and say their piece...

Copaxone, Im not able to really talk to you about. I was on it for 3 shots and found out I was allergic. I had horrible reactions to the drug. Been on Rebif now for 4 years and Im very stable. I love my drug. I have been told and heard from other posters that the welts are normal for Copaxone users. You might want to talk to your Copaxone nurse or doctor about whether you are permitted to massage the area the day after the shot (I know its not recommended as soon as you do the shot) because there is a product which Ive told lots of Rebif users about, called Arnica gel - you can find it in any health food store- its an all natural gel which is used to reduce redness and bruising. It really works. For about 6$ a tube youll find it lasts months- and for Rebif users,it eliminates the red bullseye type thing we get where we inject. Ask your doctor or nurse if its okay to massage the area with this the day after you inject....I do know that it takes 6 full months for any of the injectables to build up in your blood stream before they reach full levels- so its possible that the first two weeks that you saw nothing it was just starting to build up. I think that part is fairly common for most new Copaxone users..

questions 2 and 3 I think are related. How did you like that Achter gel injection? I did that once, it was nothing. But, it also didnt help me the way IVSm helped....however, live and learn. Not many of us have tried the Achter. Thats kind of old school- but it was certainly easier then walking around with an IV in my hand/ arm for 5 days... but onto your questions. You talk about gait and balance and also talk about exercise. As a former dancer, Im amazed that my body and feet dont cooperate the way I expect them to. Im also athletic, a whopping 110 lbs at 5'4" and in very good shape. My first year of being dx, though, I let all the muscle tone go- I was terrified. So I too, tried Yoga. Hated it. I cant sit still for 30 seconds in any position, let alone clear my mind and try to relax....so I moved onto trying new things. 4 years later, I have a pretty good routine. I own a Gazelle. Its like a glider. A cross between the treadmill and the eliptical, i find that it works so much better for me balance wise. And, I do about 2 miles a day on it. I also went out and invested in a balance ball and some tapes. Core Secrets is a great collection of DVDs which target different areas of the body...and no, its not just for girls. You use dumbells with it, and because you are sitting on a balance ball, I have found it helped immensely with balance issues! Im using 20 lb weights, imagine what a big strong guy could use?? I also own a WII. I invested in the balance board and the EA exercise game and use them both! The balance board has so many games and exercises built in that I find its really helped...the game I bought is both fun and also has a personal trainer who gets my heart beat up, and gives me both cardio and balance. I know that for someone who probably was gym bound every day this doesnt sound possible, but trust me, my tone is back,my muscle definition are back and my balance and gait- much improved! I really recommend looking into these type activities.

The swelling feeling in your head? Not so much- but I have heard of it before. Maybe someone else will pitch in with more info. Definately talk to your doc about it regularly. Your Neuro is your new best friend! I hope you have a good relationship with him. Its really great to hear from someone who says that this isnt really "hurting" them. I hope and pray that you continue to have that attitude and all good things come your way. Ive been very fortunate to be blessed with a good outlook, and have a job which allows me to see much worse things daily- keeping me grounded (and grateful) that MS is all I deal with.

Welcome again, to both of you and please keep in touch with us! Its great to have new people to join in and share with!
Nikki
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RRMS- dx 05

Last edited by MSNik; 03-05-2010 at 12:55 PM.

 
Old 04-05-2010, 06:31 AM   #5
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twc22 HB User
Re: Hi

Hey Nikki,

It took me a while to get back to you because I've switched docs and now have the greatest one in the country. She immediately put me on the IV and within 2-3 days---all my questions from above were answered. I'm running again, working out, etc...

If anyone else is reading this--my advice would be that an MS Specialist in terms of your Neurologist is extremely important. My first Neuro didn't do anything "wrong" but severely under-treated and used some outdated methods.

I'm switching to Betaseron this week. She felt the interferon would be more effective for me than the Copaxone. We'll see about this one.

Thanks for the great advice earlier Nikki! I'll be in and out of this board...but doing pretty well now. This stuff can't get me down. :-)

 
Old 04-05-2010, 11:28 AM   #6
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Re: Hi

Hi Twc- good to see you are doing well! It is important, especially in the beginning of a dx, to have the right doctor. Someone you TRUST, who can really steer you in the right direction and give you confidence that you can handle this thing we call MS.
keep us posted on how the Interferon is working for you...Betaseron is an old "tried and true" drug- Avonex and Rebif are also interferons...newer versions of similar drug. Let us know how you make out on it!
keep up the positive attitude, thats 99% of dealing with this!
nikki
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