Re: rls: Goin On

[Guest guest]

Hi Ray and all:

I found the same thing to be true when I taked with Dr. Bara-J at NIH. He

seemed particularly interested in two things: 1) My back injury and the fact

that the RLS became a constant, rather than occasional problem after the

injury, and 2) family members with RLS. Just recently, after getting my

brother connected to the internet (last weekend) and showing him around, I

loaded up my RLS page and he looked it over. Then, he turned to me and said

" what exactly does it feel like? " . I explained it to him the best that it

can be explained and he does have it, albeit a mild case. My mother had it,

increasingly worse when she was bedridden with terminal cancer 8 years ago,

and my sister just asked me last week about it, and in describing the

" feelings " that she has, it appears that she also has a mild case of it. I

passed this information on the Dr. B-J and he was quite interested in it.

I think that my biggest concern right now is having to stop my meds, too. I

am not on a high dosage of anything, but the RLS has been under control

through taking Vicodin or Percocet, and Xanax each night around 8:30 pm. I

am trying to start tapering my dosages now, so that I will be able to stop

by the 11th, 5 days before I go to NIH. I should be in great shape by the

time I get there, having been off of my meds for 5 days and then making a

1-3/4 hour flight up there. Maybe through all of this research that is going

on, they will be able to come up with something concerning this disorder,

how to better treat it, and possibly cure it. I am a little apprehensive

about going up there on the 16th, but I did talk to Dr. Bara-J again last

night. I had sent him an e-mail with some questions that I had, and rather

than e-mailing me back, he called me, just in case I had any more questions.

In the few conversations that I have had with the staff at NIH, I have found

them to be very friendly, caring people. I'll keep everybody posted on what

happens with my trip.

Restful Nights,

Jodi

Ray wrote:

> From: ripvanwinklesr@... (Ray )

>

> Sorry to hear of Virginia's condition & God be with her.I wanted to

> inform group I am also going to bethesda MD to NIH. It seems scary to me

> cuse I have to go med free & I have not been without meds in 10yrs &

> will have to be weened off. May appt. isn't for 5 wks now. He will get

> some readings alrite. I goin thru augmentation currently 1 med wrong & I

> stopped smokin & I just thinkin it as a mental episode to get thru like

> in past. Also Dr B_D interested in my family, we are fortunate enough to

> have four living generations & three of them have severe suffers. Take

> Care Ray 40 PA

>

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