Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Newbie and I have questions


  • Please log in to reply
9 replies to this topic

#1 Stape

Stape

    Newbie

  • Members
  • Pip
  • 4 posts

Posted 16 June 2008 - 05:35 AM

Hi Everyone … I am a 65 year old woman, married, 3 grown children. I am scheduled to see my primary care physician tomorrow to see “where do we go from here”. I have not been definitely diagnosed yet. Here is a little history: I have had Raynaud’s for many years, but never mentioned it to my doctor (didn’t know it was important). Just this last year my fingers started the “turning white thing” whereas before, I just had a blue finger on one hand every once in a while. I also noticed this past winter I had some blue tone to the skin on the bottom of my feet when I would get up in the morning. I kept telling my primary care physician I felt like I was swallowing over a lump in my throat and he prescribed Prilosec for GERD. It didn’t seem to do much to help, so last Nov. he sent me to an ENT specialist. I did the barium swallow (normal), the scope to look at my larynx (normal), the reflux monitor for 24 hrs (normal), the manometry test (NOT NORMAL!!!). The ENT said I had extremely low pressure in my esophagus and sent me to a digestive health specialist for an endoscopy. The endoscopy looked normal, he said. No growths, no tissue damage, no ulcers, no strictures at the stomach opening (which might indicate achalasia), and he took 2 tissue samples for pathology. Pathology reported no eosinophils which would indicate autoimmune disease. I have dry eyes from time to time and my hands have started showing signs of being really dry on the palms and between the fingers. I have chest pains from time to time (like heartburn but not burning – just a mild pain across the chest) and they’ve given me the stress test and EKG which are all normal. I had 3 urinary tract infections this past winter whereas I had not had those before this last year. I also lost weight last winter, but have stabilized now. I have a good appetite, but the weight loss was not planned. I don’t know whether the weight loss happened because of the UTIs or what. The reason I’m telling you all this is to ask, what should I be asking my primary care physician to get him to send me in the right direction to be sure of what is going on? Any thoughts? Helpful questions?

#2 truman

truman

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 625 posts
  • Location:NJ

Posted 16 June 2008 - 08:16 AM

Stape:

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 :) .
Tru

It is what it is...........

#3 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 16 June 2008 - 09:28 AM

Hello, Stape, and welcome to the ISN Sclero Forums. It sounds to me like your primary care physician has done quite well by you so far - I would keep him.

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.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#4 Stape

Stape

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts

Posted 16 June 2008 - 03:56 PM

Thanks for your input Tru and Jefa. In trying to make my entry as short as possible, I didn't mention that the Digestive Health Specialist did order a RNA test and 2 other antibody tests (I don't remember the names of those). He said the RNA test was borderline positive and the 2 other tests did not indicate scleroderma. (I hope to be able to get better info on that tomorrow when I meet with my primary care physician) So ... it may be that I will take your advice and have my primary care physician refer me to a rheumatologist. It just seems like it is taking so long to wait in going from one doctor to another and do I have to worry about getting to the bottom of this in a hurry. It has been going on since Nov. 07 when my primary care physician finally started ordering tests.

#5 Karenlee

Karenlee

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 381 posts
  • Location:Long Island, New York USA

Posted 17 June 2008 - 02:00 AM

Stape,

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.

Karen

#6 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 17 June 2008 - 03:59 AM

Hi Stape,



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.



Good Luck!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 17 June 2008 - 06:11 AM

Hi Stape,

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" :rolleyes:

Hugs,
Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#8 Stape

Stape

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts

Posted 18 June 2008 - 07:11 AM

Thanks to all of you who chimed in with your answers to my first message.
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.

#9 truman

truman

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 625 posts
  • Location:NJ

Posted 18 June 2008 - 09:05 AM

Sounds like he's got a handle on things. As far as the Raynauds; I had it for 16 years before the CREST was diagnosed. True, Raynauds can be on it's own, but generally it's part of a bigger picture; just how long down the road before that it s found.

If it's reflux that's a problem, I find Nexium is fantastic. One purple pill a day and I'm good to go.
Tru

It is what it is...........

#10 Karenlee

Karenlee

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 381 posts
  • Location:Long Island, New York USA

Posted 18 June 2008 - 09:13 AM

Stape,

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.

Karen