Re: visit to s Hoppkins

[Guest guest]

mosaicgirl1 wrote:

>

> Hey Guys,

>

> I just wanted to let you know that while I did not get a confirmed dx,

> I did feel good about seeing Dr. and he will make some

> recommendations about what we need to do next. His best guess is NS,

> but without a biopsy of something I am still in limbo. I am going to

> end up back on prednisone - which I have a terrible time with - have

> myopathy and can't walk very well. I think emotionally, though, he

> made me stop thinking I was nuts. After my horrible experience at Duke

> and being told my illness was psychosomatic, I kept thinking in the

> back of my mind that maybe it was all me. He really made me feel

> better about the whole thing.

>

> I will know more about his recommendations in a couple of weeks when I

> meet with my neurologist but I just want to thank you guys for

> sticking with me.

>

> Love to All

>

> Terri G.Thank You

> <http://www.smileycentral.com/?partner=ZSzeb001_ZSYYYYYYJJUS>

>

>

>

>

>

>

<http://smiley.smileycentral.com/download/index.jhtml?partner=ZSzeb098_ZSYYYYYYJ\

JUS & utm_id=7926>

>

>

Terri,

I'm glad you feel better about things, and I will continue to pray that

you get some answers. Marl a

--

??à?±?

[Guest guest]

Good luck terri, I do hope they dx you soon, but I was told that if they bio one place it could be neg, but still be ns. I've heard mixed emotions on biop to dx. just don't let them fool you around to long.

many blessings and hugs and a pain free day

Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

[Guest guest]

Terri,

I know how you must feel and I'm glad you have some answers now. You are not crazy!!! Yeah!!! Hopefully your experience this time with pred will be okay. Take care> Bonnie BDelicious ideas to please the pickiest eaters. Watch the video on AOL Living.

[Guest guest]

Hi Terri,Just wanted to tell you that I'm glad your JH eval went well. I go there too and feel like they listen to me. They have had the sarcoidosis cliniic since Dr. Carol s started it back in the 70's (she died of cancer a few yrs ago and there is another director now). They are up on all the latest treatments and have made a huge difference in my life. So, even though it's a far distance for me to Baltimore (I live in Florida) it's well worth it. I started going to JH 3 yrs ago. Blessings,Beckymarla bramer wrote: mosaicgirl1 wrote: > > Hey Guys, > > I just wanted to let you know that while I did not get a confirmed dx, > I did feel good about seeing Dr. and he will make some > recommendations about what we need to do next. His best guess is NS, > but without a biopsy of something I am still in limbo. I am going to > end up back on prednisone - which I have a terrible time with - have > myopathy and can't walk very well. I think emotionally, though, he > made me stop thinking I was nuts. After my horrible experience at Duke > and being told my illness was psychosomatic, I kept thinking in the > back of my mind that maybe it was all me. He really made me feel > better about the whole thing. > > I will know more about his recommendations in a couple of weeks when I > meet with my neurologist but I just want to thank you guys for > sticking with

me. > > Love to All > > Terri G.Thank You > <http://www.smileycentral.com/?partner=ZSzeb001_ZSYYYYYYJJUS> > > > > > > <http://smiley.smileycentral.com/download/index.jhtml?partner=ZSzeb098_ZSYYYYYYJJUS & utm_id=7926> > > Terri, I'm glad you feel better about things, and I will continue to pray that you get some answers. Marl a -- ??à?±?

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[Guest guest]

Marla,

I appreciate the prayers.

Terri G.

[Guest guest]

,

Thanks for the advice. We discussed the biopsy problem with Dr.

. (he was talking about a blind brain biopsy). He wants to be

sure that if anything is biopsied it is because it is inflamed,

enlarged...whatever. He doesn't want anyone just doing a biopsy for the

sake of a biopsy.

Thanks again.

Terri G.