Re: IV Saline/goldsteins ph. number?/miralax

[Guest guest]

hi

1. What is Dr.Goldsteins phone number please?

2. miralax (sp?) was discussed previously. I have tried colace and

suppositories and nada. Trying miralax now (17 grams per 8 oz. of

water) before I go back to lactulose. Any helpful hints ?? Carol I think

it was whose husband Rob was taking miralax....

Thanks!

Sincerely,

nancy

Txbriteyes@... wrote:

>

> Waverly,

>

> Who dx'ed you with Shy-Drager? How old are you? I would

> recommend you

> see doctor Goldstein at the NIH if he is still taking patients for

> research.

> I was dx'ed with shy-drager syndrome in 1990. I was told 3 weeks ago

> I do

> not have it but I have a condition in the same family. My new dx'ed

> is POTS.

> Postural Orthostastic Tachycardia Syndrome. I was told it could turn

> in to

> shy-drager... but hopefully it wont. It has most of the symptoms of

> shy-drager but is has more tachycardia problems. They are trying to

> ruleout

> Parkinsons also. I did not have any luck with the meds you

> mentioned.. I now

> take 120 ounces of gatorade & water, 6 grams of salt. Ask your new

> doctor if

> that would be something you could do with your meds you take.

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

[Guest guest]

,

Yes, Rob takes Miralax. He tried it alone (17 grams with 8 oz of

water, taken at bedtime) but has now added a Surfak (stool softener)

in the morning, which seems to help evenything work better. He has

not had a major constipation episode since he began this regime.

Carol & Rob

PS We enjoyed meeting you and your husband in Cleveland last year.

Will you be able to make it to Boston?

> >

> > Waverly,

> >

> > Who dx'ed you with Shy-Drager? How old are you? I would

> > recommend you

> > see doctor Goldstein at the NIH if he is still taking patients for

> > research.

> > I was dx'ed with shy-drager syndrome in 1990. I was told 3 weeks

ago

> > I do

> > not have it but I have a condition in the same family. My new

dx'ed

> > is POTS.

> > Postural Orthostastic Tachycardia Syndrome. I was told it could

turn

> > in to

> > shy-drager... but hopefully it wont. It has most of the symptoms

of

> > shy-drager but is has more tachycardia problems. They are trying

to

> > ruleout

> > Parkinsons also. I did not have any luck with the meds you

> > mentioned.. I now

> > take 120 ounces of gatorade & water, 6 grams of salt. Ask your

new

> > doctor if

> > that would be something you could do with your meds you take.

> >

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

[Guest guest]

,

Yes, Rob takes Miralax. He tried it alone (17 grams with 8 oz of

water, taken at bedtime) but has now added a Surfak (stool softener)

in the morning, which seems to help evenything work better. He has

not had a major constipation episode since he began this regime.

Carol & Rob

PS We enjoyed meeting you and your husband in Cleveland last year.

Will you be able to make it to Boston?

> >

> > Waverly,

> >

> > Who dx'ed you with Shy-Drager? How old are you? I would

> > recommend you

> > see doctor Goldstein at the NIH if he is still taking patients for

> > research.

> > I was dx'ed with shy-drager syndrome in 1990. I was told 3 weeks

ago

> > I do

> > not have it but I have a condition in the same family. My new

dx'ed

> > is POTS.

> > Postural Orthostastic Tachycardia Syndrome. I was told it could

turn

> > in to

> > shy-drager... but hopefully it wont. It has most of the symptoms

of

> > shy-drager but is has more tachycardia problems. They are trying

to

> > ruleout

> > Parkinsons also. I did not have any luck with the meds you

> > mentioned.. I now

> > take 120 ounces of gatorade & water, 6 grams of salt. Ask your

new

> > doctor if

> > that would be something you could do with your meds you take.

> >

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

[Guest guest]

Thanks! we can not make it to Boston this year because we are getting

our 'young adult' and ourselves ready for college:)

nancy

Carol Langer wrote:

>

> ,

>

> Yes, Rob takes Miralax. He tried it alone (17 grams with 8 oz of

> water, taken at bedtime) but has now added a Surfak (stool softener)

> in the morning, which seems to help evenything work better. He has

> not had a major constipation episode since he began this regime.

>

> Carol & Rob

>

> PS We enjoyed meeting you and your husband in Cleveland last year.

> Will you be able to make it to Boston?

>

>

> > >

> > > Waverly,

> > >

> > > Who dx'ed you with Shy-Drager? How old are you? I would

> > > recommend you

> > > see doctor Goldstein at the NIH if he is still taking patients for

> > > research.

> > > I was dx'ed with shy-drager syndrome in 1990. I was told 3 weeks

> ago

> > > I do

> > > not have it but I have a condition in the same family. My new

> dx'ed

> > > is POTS.

> > > Postural Orthostastic Tachycardia Syndrome. I was told it could

> turn

> > > in to

> > > shy-drager... but hopefully it wont. It has most of the symptoms

> of

> > > shy-drager but is has more tachycardia problems. They are trying

> to

> > > ruleout

> > > Parkinsons also. I did not have any luck with the meds you

> > > mentioned.. I now

> > > take 120 ounces of gatorade & water, 6 grams of salt. Ask your

> new

> > > doctor if

> > > that would be something you could do with your meds you take.

> > >

> > >

> > > If you do not wish to belong to shydrager, you may

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe@y...

> > >

> > >

[Guest guest]

,

Wow, sending a kid off the college is a lot of work! It's also hard

on Mom and Dad, because as much as you want them to go off and be

independent, you MISS them!

Good luck to you all,

Carol & Rob

> > > >

> > > > Waverly,

> > > >

> > > > Who dx'ed you with Shy-Drager? How old are you? I would

> > > > recommend you

> > > > see doctor Goldstein at the NIH if he is still taking

patients for

> > > > research.

> > > > I was dx'ed with shy-drager syndrome in 1990. I was told 3

weeks

> > ago

> > > > I do

> > > > not have it but I have a condition in the same family. My new

> > dx'ed

> > > > is POTS.

> > > > Postural Orthostastic Tachycardia Syndrome. I was told it

could

> > turn

> > > > in to

> > > > shy-drager... but hopefully it wont. It has most of the

symptoms

> > of

> > > > shy-drager but is has more tachycardia problems. They are

trying

> > to

> > > > ruleout

> > > > Parkinsons also. I did not have any luck with the meds you

> > > > mentioned.. I now

> > > > take 120 ounces of gatorade & water, 6 grams of salt. Ask

your

> > new

> > > > doctor if

> > > > that would be something you could do with your meds you take.

> > > >

> > > >

> > > > If you do not wish to belong to shydrager, you may

> > > > unsubscribe by sending a blank email to

> > > >

> > > > shydrager-unsubscribe@y...

> > > >

> > > >