- This topic has 11 replies, 5 voices, and was last updated 15 years, 6 months ago by
.
-
Posts
-
Everything I have read online indicates that the first thing you experience is Raynauds. I am fortunate enough not to have this terrible problem but instead my first symptom was shortness of breath. I have had shortness of breath for 4 years that drs keep saying is asthma anyone have any input? Can you have scleroderma without raynauds?
Have you read ” Scleroderma, the Proven therapy That Can Save Your Life?” by Henry Scammell? There are case histories in there and there is one that is about a woman who had scleroderma and developed raynaulds later in her disease process.
I am not an expert at this but i do know of others that have scleroderma and NEVER had raynaulds as a presenting symptom or never developed it. Others have MCTD , like me, who have symptoms of sclero, RA, lupus and myositosis and do not have raynaulds. Some who have lupus and not scleroderma can have raynaulds as well.
I dont think you have to have raynaulds to have scleroderma though it is common .
Casey
I have not been formally diagnosed with SD although I had a positive SLC70. I haven't had Raynauds, however my hands sometimes look a bit mottled. I asked the doctor and she said this is not Raynauds.
that happens to my hands too! I get white spots on them and when I laugh or cry (which i have been doing more of the latter lately lol) I het the white spots on my forehad and chest, I have had them on my forehead since I was a teen…) my feet get super cold and always have my toes look mildly purplish but no changes like raynauds
[user=944]mommaof2princesses[/user] wrote:
my feet get super cold and always have my toes look mildly purplish but no changes like raynauds
that's how I first noticed about my feet and later my fingers. Last Sept, my fingers started to turn white and blue. I have Raynuads now.
You may need to find a pulmonary doctor to check your lungs. You may need a lung CT Scan (X-ray does not work well). A lot of time people with SD develop lung fibrosis and hypertension. You may have low lung capacity which triggers cough. The Pulmonary Function Test can tell if you have asthma or not.
I am not a doctor. So you may want to check these things out. JB
Hi,
I have had pulmonary function tests for the past few years and they are always a little worse. the drs kept saying it was ashtma but I knew it wasn't. If it was asthma wouldn't I respond to the meds? I finally stopped taking them. I don't really have a cough I am just always inded and eshausted
If I was going to go see Dr. T. would i be beneficial for me to go to a pulmonologist or rheumy here first and get testing done to bring with me? Or will he want to do his own testing?
Hi
You can have diffuse without Raynauds —I had the Raynauds come after about a year —aside of the SCL 70 –what else makes youthink its diffuse scleroderma —-what about —ANA –nailfold capillary test and anti–centromere –you really dont have any symptoms to conclude anything at this point !!!!!
richieDuring a Pulmonary Function Test (PFT), the nurse gives some asthma medicine and measure before/after results. For asthma patient, the total lung function will be higher after using the medication. For me, there wasn't any difference.
You will really need to get your lung CT Scanned. My lungs are scarred and I have a lot of shortness of breath. During this year I have had two lung CT Scans. X-ray cannot detect well on fibrosis, especially early stage fibrosis.
JB
I tested neg. for the ana the Rheumatologist I saw didn't mention nailfol capillaries. The skin on my hands and face is changing and I cant breathe
I will have to make an appt wth a pulmonologist. I don't trust them thoguh zi have been seeing them for years now and all the while they tell me its astham yet this could be going on! Are your lungs any better since the AP?
The topic ‘ Is it possible to havediffuse scleroderma without raynauds?’ is closed to new replies.