[Anonymous June 30, 1998 at 4:43 am Post count: 93172]

#1050416

I hope that our new spokesperson will also be able to convey to the general public this exact same message. For the past 36 hours, I have been having every symptom of being hyper after being hypo since January or February. If one more person says to me “Well, it didn’t seem to bother George or Barbara Bush that way” I think I will scream. I am not saying that Graves Opthalmopy is any less serious, it is just a different disease with different treatment. My heart rate today has stayed up around 90 to 100. I went to the doctor’s and thank God, my new PCP saw immediately what was happening! I had blood drawn today and will have the results tomorrow. I am just so tired and I am not having fun facing this alone!

Sorry for whining–sometimes you guys are my only family!

Mitakuye Oyasin
Val

[Anonymous June 30, 1998 at 11:31 am Post count: 93172]

#1149198

Question 1: Are the antibodies responsible for graves thyroid symptom
the same as those responsible for the eye symptoms?
My reading also has descibed the eyes as One of the Many symptoms one can get
with graves.

Question 2: Does NGDF support/contribute financially to research on gravees?
If so, does it support research on both the eyes and the thyroid?

Question 3: Shouldn’t a spokesperson for NGDF work on getting out information
on ALL the various symptoms it describes in its bulletins on graves. That is,
represent all of its constituency?

Food for thought
Casey

[Anonymous June 30, 1998 at 12:54 pm Post count: 93172]

#1149199

Morning Jan, Sorry, I still feel you are missing my point. When one says they have Graves Disease – the eye symptoms are INCLUDED in the list of symptoms of Graves disease on the NGDF, FAQ.

Also, as I posted before, information I have from Mayo Clinic and NGDF Bulletin #2 states Graves is a condition effecting the eyes and the name Graves is the name of a man who described the condition years ago. It also states the condition CAN occur WITHOUT the person being hyperthyroid.

In any articles concerning Graves disease, I feel the eye symptoms should be described and discussed just as other symptoms would be.

Let’s just agree to disagree and continue to support people with any symptoms of Graves disease.

Wishing you a good week and a happy July 4th weekend. SAS

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