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Old 07-19-2008, 11:08 AM   #76
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Re: new MS specialist

Yes, I found that ironic too, and I've heard it called by both names. Does anyone have experience with the baclofen pump, by the way?

I can't help but read up on these things, and its not a good thing to do. Suddenly I feel like I have a time limit on my life! It's frustrating because part of me just wants a diagnosis, but I don't want a potentially fatal one, given a choice! I feel like these next two weeks are going to be excruciatingly long...

 
Old 07-19-2008, 12:44 PM   #77
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Re: new MS specialist

Quote:
Originally Posted by Wallis86 View Post
Yes, I found that ironic too, and I've heard it called by both names. Does anyone have experience with the baclofen pump, by the way?

I can't help but read up on these things, and its not a good thing to do. Suddenly I feel like I have a time limit on my life! It's frustrating because part of me just wants a diagnosis, but I don't want a potentially fatal one, given a choice! I feel like these next two weeks are going to be excruciatingly long...
Wallis, what's important for you now is not the 'what can happen' in the future. It's identifying what you're facing, and taking the steps to deal with what is there. I always say, I can't change what's already there, I can only do what I can to treat it. Hugs
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Old 07-19-2008, 01:42 PM   #78
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Re: new MS specialist

The pace was just revved up in a good way in terms of looking at other things but now you need to slow it down, Wallis. All you really know now is that there are 2 more possibilities and IF this is the right track, the truth is that you'll be one step closer to being able to fight this the right way. And if it does turn out to be movement or mitochondrial, we're going to get you the names of the best doctors available to put in your arsenal just in case Mt. Sinai doesn't turn out to be the ticket! Wallis, your intelligence has helped get you this far but don't let it now become the enemy.

You have probably already seen this but there is much research going on in the field of mitochondrial disorders and there are clinical trials in progress. (This is probably the case with movement disorders as well.) Your thoughts are completely normal and although I would undoubtedly be doing the same thing as you are, I'd hopefully have people around me who understand and would tell me to stop. So, that's what I'm going to tell you to do! Stop. Or at least pause.

If you need something to help you get through the next 2 weeks, it might be an idea to call the one doctor you like (I think this is your PCP) and get some anti-anxiety medication. Whatever this is, I'm sure that stress is not good for it!

The only one I remember seeing around these parts who's mentioned the pump is LIGANGEL but I've seen other people who use it and think it's been beneficial.

Last edited by Bearygood; 07-19-2008 at 01:47 PM.

 
Old 07-19-2008, 09:06 PM   #79
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Re: new MS specialist

Thanks for making me stop! Sometimes you just need to hear it from someone who knows what its like, rather than an "outsider", as it were. Thanks for the info on the pump. I was thinking about it, and I can't imagine it would be an issue... but since this thing causes T1 diabetes, my course of action has always been 6 months shots and then an insulin pump. The insulin pump is external and the baclofen is internal, so there wouldn't be an issue having multiple pumps, right? My thought is that I just wouldn't be able to use the baclofen pump side of my stomach for the insulin pump cannula. I know that between the two pumps, I would choose the insulin one if I needed to only have one.

I had a great night despite crippling pain and spasticity. I went to see Beckham playing soccer from the 9th row! It was so hot, and I wonder if that contributed to my discomfort. I did so much walking (for me) because the seats weren't wheelchair accessible. I had to use my crutches and my rotator cuffs are killing me now! It's unfair that most people just get tired legs from walking and I get tired legs AND arms! Oh, and almost fell over in a restroom from fatigue (even though I have a high risk of that happening every time I use a public bathroom, I CAN'T get myself to sit down on the toilet in public). I'm exhausted and going to bed now!

 
Old 07-20-2008, 10:32 AM   #80
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Re: new MS specialist

Beckham from the 9th row -- how exciting, Wallis! It sounds like you got a pretty good workout yourself! Re: the toilet, are you referring to difficulty sitting down or is it for hygenic reasons?

Re: the baclofen pump and the insulin one, I don't have answers but I know the doc will have them when it's time to move on that.

BTW, I caught an episode of our favorite show this morning and thought of you. The miracle doctor on this episode was a Dr. Orrin Devinsky from NYU. He said that he's often the "last stop" on the dx train for the hard-to-be-dxed. Not that he's the only ticket but since you've been in the NYU system, I wondered if you'd ever seen or heard of him.

I hope you got some rest last night!

 
Old 07-20-2008, 04:26 PM   #81
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Re: new MS specialist

I did get quite the work out! As far as the toilet goes, its for both hygienic and physical reasons. I was really really spastic and hurting so it was hard to sit down anyhow, but I'm also a HUGE germaphobe, so I wouldn't be likely to sit down anyhow! As far as the doc, I haven't heard of him, but I will certainly look into it because if he's the last stop on the dx train, I might need him at some point! Thanks for the info.

 
Old 07-20-2008, 09:03 PM   #82
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Re: new MS specialist

I'm often a croucher, LOL, but I know that's not a good option for you. I have noticed that the small packs of toilet covers are getting easier to find in stores and I'm not sure if you could use THIS thing but I just learned about a product called Whizbiz from Australia. (I know, what a name! )

As for the neuro who said he was the last stop, I hope you WON'T need him! (And do note that this was self-proclaimed. ) It was more just wondering if you were aware of him because of NYU.

I meant to ask you -- because they're working off blood right now, is the LP on hold?

Wallis, even though it sounds like you're in good hands right now, I hope you will still update Dr. M. It couldn't hurt -- and it might help!

 
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