Just returned from U of M visit

[Guest guest]

,

Thanks for your report on this. U of M is a great hospital but I'm sorry you

didn't see your regular doctor as it's always hard to see new ones since we have

so much to explain, especially when there is a fellow involved. I hope that the

creatine works for you. I don't blame you about not wanting to gain weight or

have your sugar dip. Both of these battles are not fun.

Alice

Hi all, I just returned from my return visit to the nueromuscular clinic at

University of Michigan. Of course the Dr I saw initially is now done with his

fellowship and I had a new guy today and he has a differnt Boss (head Dr) than

the other one did. Some of my info today is conflicting with previous. they both

say mito, and fat metabolism, but before that it is slowly progresive, and now

probably not progressive, but only time will tell. They said today my muscle

biospy showed deficit in medium chain fatty acid metabolism, but not a very big

deficiet which it alone whould not account for all my symptoms. The ischenic

exersice test showed some dificulty with lactic acid clearing. They want me to

try creatine again as it is shown to build strength. I tried it before and felt

I gained weight and thought my blood sugar was dipping. But now that I am eating

6 times aday maybe I'll have a better experience with it than before. Also said

I could split the dose up. I have already gained

weight since eating more often. Still tying to get down pat how much I need

to feel good but not gain weight. in Michigan

[Guest guest]

Hi . I live in Ann Arbor and go to UM hospital too. I've had

the same experience with docs changing. Fortunately, I still have

my neuromuscular doc there but I too like the fellow that was

assigned to me. I'm sure he'll be changing. Who is your

attending ? I see Dr. Feldman.

Regarding the creatine, I've gained weight with it as well. It also

makes me severely dehydrated. Hope you have better success.

Hugs,

bug

[Guest guest]

Laurie and I were told by Dr. C today in Cleveland that he would like us

to try the Creatine as well. He said if it wasn't helping in 6 to 8

weeks to stop taking it.

The conference next year will NOT be at a Westin like in Pittsburgh.

The meals won't be rich like they were in Pitttsburgh either.

Alice, we told Dr. C you said hi! He said hi back and was glad to hear

that things were a little better for you now.

venomvw wrote:

>Hi . I live in Ann Arbor and go to UM hospital too. I've had

>the same experience with docs changing. Fortunately, I still have

>my neuromuscular doc there but I too like the fellow that was

>assigned to me. I'm sure he'll be changing. Who is your

>attending ? I see Dr. Feldman.

>

>Regarding the creatine, I've gained weight with it as well. It also

>makes me severely dehydrated. Hope you have better success.

>

>Hugs,

>bug

>

>

>

>

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>

[Guest guest]

,

Did he give you the dose amount?

Alice

Laurie and I were told by Dr. C today in Cleveland that he would like us

to try the Creatine as well. He said if it wasn't helping in 6 to 8

weeks to stop taking it.

[Guest guest]

Alice

5 grams (1 level teaspoon) in 8 ounces of water once a day.

laurie

>

> Reply-To:

> Date: Mon, 23 Aug 2004 20:27:41 -0600

> To: >

> Subject: Re: Re: Just returned from U of M visit

>

> ,

>

> Did he give you the dose amount?

>

> Alice

>

>

> Laurie and I were told by Dr. C today in Cleveland that he would like us

> to try the Creatine as well. He said if it wasn't helping in 6 to 8

> weeks to stop taking it.

>

>

>

>

[Guest guest]

Yes, 1 tsp of the powder in at least 8 oz of water once a day.

A ADAMS wrote:

>,

>

>Did he give you the dose amount?

>

>Alice

>

>

> Laurie and I were told by Dr. C today in Cleveland that he would like us

> to try the Creatine as well. He said if it wasn't helping in 6 to 8

> weeks to stop taking it.

>

>

>

>

[Guest guest]

Hi . Yep, Dr. Nolan was the fellow I had that I liked so

much. He was working with Dr. Feldman. I've also seen Dr. Gruis

(fantastic) in the movement disorders clinic. She was the resident

under some other male doc. The other two names don't sound

familiar. Dr. Gruis was by far the most thorough doc I've ever seen

in ANY specialty...which says a lot since I think I have a doc in

every specialty.

Good luck with your creatine. Don't forget to drink a lot of fluids

so you don't get dehydrated.

bug

[Guest guest]

Hi . I just realized I made a mistake about the docs. Dr.

Gruis was the one I DIDN'T like ! She really ticked me off when I

was supposed to see Dr. Feldman for my official diagnosis and

instead Dr. Gruis saw me. She told me that mito would be " nothing

more than an inconvenience. " I was livid. Especially considering I

have breathing and swallowing issues. What part of breathing and

swallowing does she think is an inconvenience ? URGH !!!!!!!! I

looked back at my records and it was another doc that I saw in the

movement clinic. Good thing, because I'd hate to go around raving

about a doctor whom I feel is extremely insensitive...to say the

least. Hopefully you've had a better experience with Dr. Gruis. By

the way, don't let her do an IV on you because she doesn't know what

the heck she's doing ! She said... " boy, I haven't done one of these

since med school. " EEKS ! After a lot of digging for my artery, I

finally told her to stop.

bug