Author Topic: Can't believe I just joined another medical support forum  (Read 2311 times)

free2be

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Can't believe I just joined another medical support forum
« on: November 18, 2010, 09:08:20 pm »
I don't think any forum will live up to my expectation now, after having had the support and information from this one, but I just joined one for people with Addison's Disease.

I'm feeling very frustrated. I know I'm only 7 weeks post CK, but I can't tell what symptoms are from what. I don't feel that I'm getting the answers I need from my current endocrinologist; I don't think they have many Addison's patients since it is so rare. Glancing at the Addison's forum I got some ideas and information that the doctor has not been helpful with. I don't know if we have a handle on my Addison's as much as possible or not.

I have an e-mail out to Dr. Chang to see what his thoughts are on some of my symptoms, but some of it, like fatigue, just runs together with the Addison's and may be from both issues.

I'm so lucky to be such a rare specimen.  :(
Just whining, I guess.

Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

TJ

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  • 1.2 cm AN right side, CK November 2010
Re: Can't believe I just joined another medical support forum
« Reply #1 on: November 18, 2010, 10:19:49 pm »
Connie

What type of symptoms are you having?  Tomorrow is my last session of CK, so far the only thing I have noticed is an increase of tinnitus.  What do I have to look forward to?

TJ

questions?586

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Re: Can't believe I just joined another medical support forum
« Reply #2 on: November 18, 2010, 10:22:30 pm »
It's rough being so special!  Keep at it and you'll get your answers.  Hugs.  Starr
AN 1.4 cm x 1.7 cm x 1.0 cm
fair amount of hearing loss right ear
diagnosed 7/29/10

I'm a fun and reasonable RN, now living far from appropriate medical care. Feeling overwhelmed!

free2be

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Re: Can't believe I just joined another medical support forum
« Reply #3 on: November 19, 2010, 04:55:29 pm »
TJ,

You may not have any issues; everyone is different. What I'm frustrated about most is my fatigue, but that's a No. 1 symptom with Addison's also. My blood pressure is also low, probably from the Addison's, but I'm not getting the answers I need from my endocrinologist. So, I'm frustrated. I've had some head pain and face issues from the CK, but it's from the trigeminal nerve and not everyone has that problem; in fact, I'm not sure that too many folks do.

You'll probably do great. Don't worry...:)

Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

6pick

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Re: Can't believe I just joined another medical support forum
« Reply #4 on: November 19, 2010, 10:16:38 pm »
Connie!  :(  Hang in there, girl. My first thought is food intake, but I know you watch what you eat.

Keep us posted,

Mark
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change