Newbie and I have questions
Posted 16 June 2008 - 05:35 AM
Posted 16 June 2008 - 08:16 AM
I would begin with a visit to a Rheumatologist first before the general practitioner. Rheumatologists will perform blood tests that your general practitioner won't, including ANA testing.
I went to my general practitioner for years, who just dismissed many symptoms. One visit to the Rheumatolgist on a visual produced her diagnosis and blood tests confirmed.
Keep us posted.
PS: Welcome aboard to a very informative, positive and friendly forum .
It is what it is...........
Posted 16 June 2008 - 09:28 AM
Tru is right about a rheumatologist being the next step, though I have two different general practictioners order ANA panels, so rheumatologists are not the only ones who do them. The trick is finding a doctor who will listen to what you have to say and work with you. I would definitely ask for a referral to a rheumatologist when you see your doctor tomorrow. It wouldn't hurt to make a list of all your symptoms to go over with him, especially since all of these things have happened over time with him. Then you can ask whether it is possible that having all of these symptoms (GERD, Raynaud's, dry eyes and unplanned weightloss) might be indicative of some kind of connective tissue disease. Please let us know how your appointment goes.
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Posted 16 June 2008 - 03:56 PM
Posted 17 June 2008 - 02:00 AM
Welcome to the forum. I am glad you are going to get on top of things right away. Early diagnosis seems to be the best line of defense. Good luck and keep us posted.
Posted 17 June 2008 - 03:59 AM
Welcome to the Sclero Forums. I don't have much else to add that would be any different from you've already been told. The rheumatologist idea is a must however.
Posted 17 June 2008 - 06:11 AM
WOW...I'm very impressed with how organized your initial message was!
I'm glad you're making inquiries here...glad you've joined us, but sorry you've joined the ranks
w/the ailments that plague you.
I'm "on board " w/th rest of the ladies.
However, I'm concerned that you haven't been put on a medication to keep your Raynauds in check, which is quite important. Whoever you see first, please ask about that.
Keep posting... there are alot of wonderful folks here and we all are one big "cyber family"
Posted 18 June 2008 - 07:11 AM
I went to the primary care physician yesterday, and he said he did not think I have scleroderma (whew!, I hope he is right). The only two symptoms which point to scleroderma are: my history of Raynaud's, which I have had for at least 10 years, and the newest thing, which is the extremely low pressure in my esophagus. All other tests were negative. He ordered a blood draw to see how my kidneys are functioning and something else.
In regards to the Raynaud's which Susie brought up: I didn't know there was a medication for the Raynaud's - and since I have a flare up of that only every once in a while - is it important to be on medicine for it? The doctor said some people live with Raynaud's with no other problems or indications that it is part of a bigger disease.
He ended up suggesting we address the esophagus problem with Prilosec (to keep any scarring from occurring if food or acid backs up due to the lack of pressure).
I asked him if I may be so recently into this possible disease of scleroderma that none of the tests would show a positive result, and he said that maybe that could be happening. I am to see him again in about 4 weeks. If you have some suggestions as to what I should be saying to him or what I should be looking for, please speak up. I can use any help you can give me.
This is why I am here asking questions. I am not sure what to ask and how much to press for another opinion - especially when all the markers are negative at this point.
Posted 18 June 2008 - 09:05 AM
If it's reflux that's a problem, I find Nexium is fantastic. One purple pill a day and I'm good to go.
It is what it is...........
Posted 18 June 2008 - 09:13 AM
There are medications for Raynauds, different people take different things but my Rhumetologist reccomended Viagra when the winter rolls around. I have heard time and time again to treat each Raynaud attack as an emergency, as in getting the hands warm and blood flowing ASAP. Heating pads, running them under warm water, gloves, windmill arms. Whatever it takes. I don't mean to be a Debby downer but it can cause finger ulcers.
My first experience with CREST was the Raynauds and severe reflux. The other symptoms came later on so I suggest you have all the testing done that you can get. You may very well have only reflux and Raynauds, which I hope is true, as they are manageable, but things can strike at any time so please keep an eye out for any new occurances.
I was told I have cREST with limited Scleroderma, and no calcinosis. Also UCTD. Even at a mild diagnosis, I have had chest CT's to check for lung fibrosis, x-rays, hand doppler, echocardiogram, scheduled PFT and thyroid doppler. So my point is, best to be safe and tested just incase.
I hope that answered some of your questions. I'm sure others have some good advice too.