Finally got to see a Rheumatologist.

[_7810]

I was told by my General Dr. that my ANA test showed that I had ANTISCLERODERMA-70 Antibodies. That along with the symptoms I have been having he recommended that I go see a Rheumatologist. When I made it to her she immediately told me that most of the tests done in a general practice office were false positives. I answered all of her questions, she looked me over head to toe, ordered x-rays of chest and hands along with blood drawn for what she called an AVISE CTD test. Can anyone tell me if they had different results from the blood tests done at different offices or the difference between ANA and AVISE?

I also learned over this past weekend that my grandmother had Scleroderma and Raynaud's. I was not aware of this when seeing the Rheumatologist a couple weeks ago. I actually left my appt. thinking maybe the Dr. was right that my first blood test could be a false positive and all of my symptoms were me losing my mind and going crazy. After hearing about my Grandmother having had Scleroderma it has made me wonder now if it can possibly run in my family or something?? Anyone know anything about that?

Anyone care to give me their story or any advice? I will return to hear my test results on Monday and I am having a very tough time with the temps dropping here in Georgia. I can hardly sleep from joint pain in my hips, hands and arms. My hands are so puffy in the mornings that I can't hardly wiggle my fingers for hours. I am still feeling tired and nauseous as well but more often than in the past months. Gosh I am only 42!!! This cannot be how you are supposed to feel at 42!! Or 62 for that matter!!!

[Kilncadzow]

I was diagnosed with scleroderma and Raynaud’s in my late twenties. Just turned 74 and am fitter than a lot of my friends. Have been left with a bent right hand but no pain. Raynaud’s still a nuisance but have learned to live with it.

[_7810 in reply to Kilncadzow]

Thank you! This is very encouraging to hear.

[Poppy221]

When I was diagnosed I was asked about family members who could have had scleroderma or other autoimmune diseases and there were none - but clearly relatives are significant. With swelling hands I was given edema gloves to wear overnight by the NHS. Mine are sort of beige spandex and include fingers - you want a pair that is snug when your hands are not swollen, but not tight. Anything like this is a balance between stopping swelling and stopping circulation - which is a really bad idea. You may have to work through several pairs to get the right fit. However that really does help with stopping swelling. The other thing that causes swelling in my hands is getting too hot - then my hands get puffy.

[positivedaybyday]

Hi,So sorry to hear you may have Sclerodetma.

Yes apparently it runs in your family genes. If you have any siblings they won't get it but their children have a very slim chance of this disease in the future. It may be worth them having a test so they are aware if they could at some point develop the disease. So avoiding stress is a good start.

I was told the disease needs a trigger like stress or a virus. The Dr's are unable to say what exactly.

I had an aunt who had Rhumatology Arthritis very badly which is in the same autoimmune sphere.

I had a bad flu virus 3 years ago which I couldnt shake off & may have caused my disease to start. It is a bit of an unknown I'm afraid.

The best advice I can give you is to wait for your Rhumatology appointment. They will do lots of tests & steer you on this journey.

There is no cure but the disease can be managed & people can vary a lot in the degree of the disease. Some just have "limited" scleroderma while others have the full blown diffuse cutaneous scleroderma like me!

You will learn as you go along. You will need to be strong & fight this disease tooth & nail. Being positive is such a valuable tool. Yes, you will have times when it feels all too much but you will get there & the support of Dr's & Consultants will help tremendously.

It helps too to take a family member or friend with you so that they can learn to understand this disease too. It's hard for them to see you suffer & some don't know how to cope or what to do to help.

This site is excellent too to express your thoughts & fears as we all have lots to offer you. Especially a big hug! Look after yourself, we'recommend all here for you. Xxx

[positivedaybyday in reply to positivedaybyday]

Oops Rheumatoid Arthritis, the auto spell changed the word!

[_7810 in reply to positivedaybyday]

Thank you so much for your reply! Very helpful! Best to you and your journey!!

[Sanmateogirl107]

wild lettuce extract for pain ebay trust me it works. i am taking it for scleroderma/lupus. love julie or mt rose herbs has it ok. rose mary break a twig of it under warm water in the bath it will help you fall asleep. the smell is great crush it ok under the tap. for cold nights electric blanket. love julie

[Joan59]

Sorry to hear that you are going through this. I was 40 when I was diagnosed and it took them 2yrs to tell me this. I have both systemic sclerosis and raynauds. I had to give up a lot at first. I use to scuba dive ride a motorcycle and love to play sport and walk hills etc but for me that all stopped. I am now 61. It does get better once you are on the right treatment and see the right consultants. I am the only special one in my family to have this. I wish you well.