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Old 02-19-2016, 03:49 PM #11
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Nurse warned me #2 had no bedside manner but I liked him (tastes differ). Then he left. DH hated #3, I didn't, but left anyway. #3 I was luke-warm about, he moved. 4 I liked but he moved. My love life was way less complicated!
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Old 02-19-2016, 07:56 PM #12
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I've only been through 5 so far but need to start looking for #6. Last one left the practice he was in right before Christmas. I've been dragging my feet because so many of them sucked.

Thanks for the early present Dr. A.
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Old 02-20-2016, 09:36 AM #13
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After my twins were born, a neurologist with broken English came in my room. From across the room he said "Mumble, mumble, your daughter, mumble, mumble, PALSY" and left. I'd just had a C-section, couldn't leave the bed. Alone and upset I laid there. Hours later a handsome man with golden hair and blue eyes came and said "She just has a pinched nerve. You're too little to be having twins!". Was he wearing cowboy boots under his scrubs?

Months later my pediatrician told me what I had already noticed. The babies' heads were not rounding out. "Other kids can be so cruel. There's always plastic surgery" she says. Again, my heart sank. Went to see cowboy neurologist. He is wearing cowboy boots under his jeans and dress shirt. Later he gives his opinion "Ain't nothing wrong with their melons. You're just too little to be having twins and they got squished." I am hopelessly in love, but he moves soon to Montana. That's what maverick cowboy neurologists do.

Later, looking for answers to my symptoms in a different state we had moved to, my GP sends me to a Neurological Ophthalmologist. "I can't find anything", he says "So I'll do magic tricks for you." So he did. He was just OK at that.
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Old 02-22-2016, 10:29 AM #14
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I've only been dx'ed since Aug '13. And I'm one neurologist number 3. First one was an idiot who tried to pawn it off as diabetes. Second one drove me nuts by suggesting that if PT didn't work as they kept crippling me further, that I might try going to the YMCA and taking some yoga classes... ah huh, so certified medical practitioners made things worse, but I'm suppose to entrust my body to a part time yogi.

My latest neuro, we can get along. My DH doesn't like her much because she doesn't talk down to his level. And she doesn't have a lot to offer. But then, I'm at the end of the line for medication to treat my symptoms, and I'm already taking a DMD. So she's kind of in the position of well... let's just keep an eye on things and hope you don't get worse not that there's anything we can do for you if you do... you can't take steroids like 99% of the rest of the pts.

She did however get me hooked up with my AFO, that I've been trying to get for years now. She also introduced me to a local support group for MS. And I am finally after all these years "disabled". Not that it does me any good after all these years to finally be "disabled" because I don't qualify for disability, but it will help me out down the road when my DH retires or if he should pass before I do. Even though they're changing the rules for spouses collecting the other's social security but I'm already the injured spouse, so the rules won't apply to me and I should be able to collect the entirety.

So there's a lot more she has done for me than my previous two neurologists. The first one only made me want to bit through my tongue so I wouldn't shout explicitives at him so I wouldn't find myself getting dx'ed with Tuerettes syndrome and the second one, really only gave me a pretty well known dx and a DMD rx.
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Old 02-22-2016, 11:37 AM #15
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I do believe every moment is OT/PT time. I try to live my life like that. I've done a little PT for students, certainly can expect it for myself. I do memory and logic stuff also. Push the envelope a little.
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Old 02-22-2016, 01:31 PM #16
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Quote:
Originally Posted by Starznight View Post
And she doesn't have a lot to offer. But then, I'm at the end of the line for medication to treat my symptoms, and I'm already taking a DMD. So she's kind of in the position of well... let's just keep an eye on things and hope you don't get worse not that there's anything we can do for you if you do.
Sadly no matter what stage we are in I think you hit the nail on the head in that overall they really don't have much to offer us.

My dear, kind MS specialist looked like he was going to cry when I made a similar comment but at least for now I don't think there is really all that much more than the old whack a mole strategy when it comes to medications to help us.
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Old 02-24-2016, 01:25 AM #17
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I do believe every moment is OT/PT time. I try to live my life like that. I've done a little PT for students, certainly can expect it for myself. I do memory and logic stuff also. Push the envelope a little.

I'm definitely a proud sponsor of PT and OT's. Just not when I can mostly walk into their office the first day... Kind of crawl into their office the next appt... Ready to cry the following and by the fourth or fifth appt I'm incapable of walking and can barely move while maintaining consciousness for the pain.

Do you get pain with PT, yep! and most of the time in all the wrong places, but it's not suppose to be to that degree and you aren't suppose to leave with more injuries than you went in with. It just comes down to the manifestation of my MS. The signal that tells the brain to "relax" contracted muscles... isn't really there. So when the PT's kind of ignore me, or try to "strengthen" other muscles to help with that, my body just becomes a hot mess of Charlie horses and contracted muscles that won't let go no matter how many relaxants I'm taking to try and force it.

And all of that leads to more fraying and tearing of ligaments and tendons. And more pressure on bones (occasionally fracturing them despite an excellent bone density) and yeah, a physical therapist can pretty much have me laid up in bed for about 3 months after only two weeks of seeing them.

I just happen to be one of those weirdos who thinks an ancient torture chamber looks more like a spa resort... A nice stretch on the rack, followed by a bit of acupuncture in the iron maiden, get that nice deep back stretch while you hang upside down with comfy stocks around your ankles. It's even like the dugeons were made for MS'ers nice and cold stone walls with anti-skid and fall safe dirt floors.

Now I am hopeful that as I heal up some more with the AFO, that I'll be able to see a PT, already know the PT I want to see, and hopefully instead of a "strengthening" regimen I'll be given a nice stretching one. But hey they go by what they're trained, and it can be really hard, at least in this area, to find a PT who has much if any knowledge of MS. Let alone finding one that has any experience with such stubbornly spastic muscles.

But I have had enough experience in the past (been in and out of PT since I was 6 years old) to know the benefits it can have. Of course it also told me what to expect and what is sooooo not right, when it came to my body's reaction to the exercises.
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Old 02-24-2016, 09:13 AM #18
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I have gone "officially" to PT/OT for initial evaluations 3 times and was not impressed. The 1st seemed impressed that I didn't seem really bad and gave me tasks that seemed really simple compared to daily things I required from myself. The 2nd I had me do "busy" work on an isolated weekly period and I stopped going. The 3rd had me doing something I felt was like trying to run before I could walk so never went back after that 1st visit. Perhaps OT/PT I saw were better equipped to work with major physical changes from major accidents or events, not from this capricious "creeping paralysis". From self-toileting to opening packages in boxes, swathed in tape and bubble wrap holding dollhouse miniatures using the one hand I just do my best to do stuff all the time. I have logic and memory stuff on computer and see how spot on I am some days. I feel constant obstacles to overcome are better than only weekly ones. Even typing this involves eye-hand coordination and cognitive skills.
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Old 02-24-2016, 11:19 AM #19
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Quote:
Originally Posted by Jules A View Post
Sadly no matter what stage we are in I think you hit the nail on the head in that overall they really don't have much to offer us.

My dear, kind MS specialist looked like he was going to cry when I made a similar comment but at least for now I don't think there is really all that much more than the old whack a mole strategy when it comes to medications to help us.
Ain't that the truth!!. PT/ OT can only go so far with MS progression as it
Goes on and weakness and age set in. I'm in that place now. Older, weaker
and wiser? I hate this dam disease for all of us.....grrrrrrrrrr!:
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