Viewing 15 posts - 31 through 45 (of 95 total)
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  • Anonymous
    Post count: 93172

    Joanne,
            There are two support groups in PA. Give me a E-mail and I will give
    you the phone numbers. Or you can send a self
    addressed stamped envelope to The National Graves
    Disease Foundation/I at 2 Tsitsi Court Brevard, NC 28712
    Regards,
    Jake George

    Anonymous
    Post count: 93172

    Gail,
            We have three support groups in CA. one in Berkely (Susan Calico 510-540-8640)
    one in Santa Cruz (Deborah Simms 408-479-0559 and
    one in Cypress CA (Tina Shiflett 714-952-0976. We
    all know life can be a bummer after Graves but it
    can be good again. Send a self addresed stamped
    envelope to the National Graves Disease Foundation/I
    at 2 Tsitsi Court Brevard, NC 28712 and we will
    get a info packet out to you.
    Regards,
    JAke

    Anonymous
    Post count: 93172

    Denise,
            Send a self addressed stamped envelope to
    the National Graves Disease Foundation/I at 2 Tsitsi
    Court Brevard, NC 28712. Or give me a e-mail or call.
    My phone number is 407-254-9719. There is help
    and info available out there.
    Regards,
    Jake George

    Anonymous
    Post count: 93172

    Dear Jake,
    You say you HAD the bugged eye look, so I guess that means the orbital decompression worked for you. Would you mind giving more details like, did it only take 1 surgery? Was your eye sight affected in any way? How long did you have to wait, as far as the disease being in remission was concerned? Do you look like you did before you got sick? Please excuse all the questions but if one more person looks at me, giving me an extra wide eye expression I’m gonna kill em!
    Thank you so much, Denise

    Anonymous
    Post count: 93172

    Dear Katie,
    How did that doctor visit go? I am still waiting for an appointment to be set up as far as my next radioactive iodine treatment is concerned.
    My drivers license picture would not go in Elle magazine either let me tell you! Isn’t it funny how you can’t see it in the mirror but take a picture and watch out! Oh well.
    Just out of curiosity (bad spelling) how old are you?
    Hope everything went ok. Let me know.
    Take care, Denise

    Anonymous
    Post count: 93172

    I had the radiation treatment done on my eyes.
    I had it done at UC Davis, in Sacramento, CA.
    I had been seeing the DRs. at UCSF Medical Center.
    The treatment definitely improved the movement of
    my eyes, and my double vision is much better.
    It also relieved some of the pressure and watering.
    My eyes still protrude, which I’ve gotten used to.
    I was lucky that my eyelids still closed so I avoided
    that complication.
    Mary

    Anonymous
    Post count: 93172

    Dear Mary, Thanks for the reply. I think the radiation for the eyes would be a much better option since everyone in this group who has gone for the decompression surgery has had it 5 or 6 times without great results. Thanks again, Denise

    Anonymous
    Post count: 93172

    I’m not sure if there’s a cure. I’m new in this
    ball park. I was just diagnosed the end of June.
    I have another appointment on Aug. 30. I’ll know
    more then.
    They keep saying after 8-10 weeks on the Tapazol,
    I’ll feel better, but I was never sick. It all
    started with this stupid rash. We went the whole
    rehlm of testing. First they thought it was my dog,
    then our hot tub, and finally my dermatologist sent
    me to a Major Medical Center (Hershey, PA) to a
    dermatology lab for testing. The guy there is a
    world-renowned specialist in the field. BUNK!!!
    After five days of testing, the only thing they
    could come up with was a sensitivity for nickel.
    So I switch dermatologists and immediately she said
    it was not a nickel rash, she thought it was my
    thyroid. My blood counts were so far out of wack,
    I’m anxious to see what they are now after being on
    the medication. They insisted I had to be sick.
    The only symptom I had that I could see other than
    the horrible rash was I was super irritable. Bless
    my husband and my son for their patience! I don’t know
    if that irritability was part of the disease or just
    the stress of the rash and the long ordeal (it started
    last November).
    Plese stay in touch and let me know how your sister
    is progressing.

    Anonymous
    Post count: 93172

    I’m new to the internet, and new to this diagnosis of Graves Disease…I was diagnosed in June, had RAI once with no appreciable change in labs yet. I’m having alot of eye involvement, which is discouraging. My emotions are on a roller coaster…Do you all out there work at regular jobs with this. I’, off duty for now and concerned I may never return due to this lingering dis-ease. I, too, live in a rural part of Northern California, up in the redwoods, and there are no endocrinologists in the area. I plan to see one from San Francisco, in September. I’m quite concerned about my eyes so if you know anything that helps, let me know. I would like to talk to anyone who has this disease and share experiences. My home phone is (707) 668-5541

    Anonymous
    Post count: 93172

    Hi Rachel!
    I’m new at this too. I too was diagnosed in June.
    I have an appointment on the 30th of this Month.
    I don’t have any eye involvement at this time but I
    do have vision problems. From what I hear most people
    experience double vision but that’s not the case
    with me. I have difficulty reading which scares me
    too.
    I am working full-time currently and hopefully I
    will remain doing so. I know I’m fortunate from
    many people I’ve talked to. I hope it doesn’t get
    worse but I don’t know. I have many questions to
    ask when I go in next week.
    I understand there’s a CHAT room opening up soon
    for Graves Disease which I think will help a lot.
    I know I would like to talk to others with the same
    problem. Its scary.
    I know they say after I’ve been on the medication
    for about 10 weeks I should feel better, but I don’t
    know that I ever really felt sick. It scares me to think
    that I may be sick. I do tire easily and my
    emotions were on a roller coaster too. I’m thankful for
    my patient husband and son.
    My doctor put me on Zoloft for the emotions and it really
    helps. Its also not one of those antidepressents
    that puts you in la-la land.
    I’m also on Tapazol for the Graves Disease. I’ll
    be anxious to see what my blood work shows. I have to go
    today for the bloodwork so they have the results
    by the end of next week. Modern technology is so slow
    sometimes.
    Keep in touch, good luck. OK?
    CU
    PS I’m new on the internet too and was very glad
    when I found this BBS.

    Anonymous
    Post count: 93172

    Hi. My name is Bernadette and I was diagnosed with Graves in April. I was very thin up until January. Then I noticed my weight has started to go up. With the PTU, my weight continues to climb!! :-). My doctor said that I am in the 10% who will gain weight. Anyone else with the same problem!!! Please Help!!
    Bernadette

    Anonymous
    Post count: 93172

    I’ve been reading with much interest the stuff on radio active iodine treatment. My sister was recently diagnosed and when she returns to San Diego next week she is scheduled to start those treatments. While she’s been in Virginia I’ve been letting her look up info in Graves’ on the Net (she doesn’t have a computer). I had asked about a local support group for her, but the one suggested was in Berkley (500 miles away near San Franscisco). She’s at the southern most part of California – almost to the Mexican border. Any support group there?

    Anonymous
    Post count: 93172

    The irritability is DEFINITELY a part of the disease. It’s a symptom I keep seeing come up over and over again. I’m glad I found that out about my sister. She’s sometimes like a time bomb. She has some added stress in her life right now in addition to Graves because of a recent death in the family. I’ve never seen her this close to the edge though, even when our Father died two years ago. She too had a lot of mis-diagnosis of the rash, including being told she had lymphoma – that sure added some stress. One dermatologist told her it was a fungus and of course she had all the allergy testing and was allergic to everything. The Graves’ diagnosis is the first that encompasses all of the symptoms she has and a few she hadn’t connected to illness – like the irritability. She also got tremors in her extremities, heat intolerance, hair loss. The only major symptom she hasn’t displayed is the eye bulge. Keep in touch and I’ll pass on comments to her.

    Anonymous
    Post count: 93172

    I’ve been diagnosed since June, had one dose of RAI with no results as yet. I live in a remote part of Northern California, no endocrinologists in area…planning to see one from San Francisco, in Sept. ..I’m on inderal and ativan, not working, feeling crazy alot of the time, and lots of eye involvement, swelling, rednedd, bulging proptosis. We need to establish a support group in this area and I would be glad to facilitate this effort. I’m a RN,PHN, but I need lots of help understanding this disease.
    Please add me to the list of those interested in being part of this support group. Also, feel free to contact me by phone @(707) 668-5541. I’d love to talk,

    Anonymous
    Post count: 93172

    Thanks Joann, for responding on the internet. I wasn’t sure I ended up on the message board or not, so I tried again, so you may see a 2nd entry from me there. I’m eager to hear how your labs turn out…My thyroid hormones are still up in the 20’s, and without drugs ( I’m on inderal, ativan, and trazodone) I’d be even more a mess. My partner, Ernie is patient and kind, but my emotional hyper-reactivity bothers me too. I still see no end in sight with this. I wonder how long before I feel normal again…? I will keep in touch and please, you do the same. Good luck with your labs…

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