Scleroderma Sine Scleroderma
Posted 16 January 2009 - 11:50 AM
My grandmother had lupus and rheumatoid arthritis. My mom has rheumatoid arthritis and osteoarthritis.
I went to rheumatologist in February 08. They said we'll see you in 3-4 months. Went back in October. Some joint pain and fatigue. Dry mouth and trouble swallowing was really bad at the time - I think I talked myself into those symptoms . I had noticed about mid July though that when I'd eat my Chocolate Riesens and drink cold water with them that it would almost "hurt" going down. Thought maybe I should lay off the candy. Mentioned that and the occasional new symptom of heartburn. The doctor said, "You don't have scleroderma, you have lupus." Okay...why doesn't that feel right to me? My face is a little red, yes...but doesn't look like the pictures I've seen of malar rash.
Went to OBGYN...he asked me to be seen by a different rheumatologist. Turns out to be the one that treated my grandmother. I told him about my Sclero concerns. He looked at me for maybe 5 minutes and said, "You don't have scleroderma."
They have done blood work (wow, not sure there's much blood left, LOL). They did an x-ray on every bone in my body and and EKG. I then had a barium swallow (one in November 08 was normal). It now shows GERD. CONSTANT heartburn for 3 weeks now. Just progressively got worse. They have me on prilosec but two pills, twice a day is not helping at all! I am also having a little shortness of breath when walking up stairs, something I never did before. I am scheduled for a nuclear bone scan in a week and go back to the doctor that day also.
Don't get me wrong, I don't want the sclero diagnosis...but I don't want it to be missed either. Yes - I went to the internet for my information. Type in GERD with positive ANA or anything like that and that's exactly what comes up.
So...I hope this has made sense. I am about to leave my computer for the weekend so may not get to hear from anyone until Monday, but I would love to be in contact with others that might have the same symptoms or any info. I've cried so many tears. I can't get this off my mind. My life is almost on hold. I've got to get control, come to grips and live what ever is left of my life to the fullest! Thought maybe someone might could give me pointers on that one too.
Posted 16 January 2009 - 12:55 PM
I am sorry about your troubles and hope things improve.
I myself am not diagnosed and do not have as much knowledge as these ladies on the board but will try to help.
I am not a doctor or even in the medical field so take my info to form questions for your doctors.
I do have a few questions, what are they treating your lupus with? What tests did they do? My understanding is that sclero is treated as the symptoms arise, the ladies here with more experience will chime in if I am wrong.
So, anyhow symptoms get treated individually so things like your GERD would be treated with the appropriate medicine.
More serious problems would be treated with immunosuppressants. The only difference is I believe Corticosteroids are not recommended for scleroderma patients. So instead of that they use things like Cellcept, Plaquenil and others that I can't recall the name. Others here know way more about this than I
Anyhow, they are both (Lupus and Scleroderma) treated with the same type of drugs. The only difference is that Lupus tends to respond better to drugs, than Scleroderma.
Another thing GERD and difficulty swallowing is a symptom of SjÃ¶gren's which is very commonly associated with Lupus and is then called Secondary SjÃ¶gren's. With Secondary SjÃ¶gren's you will have a positive ANA as well.
Another thing that is highly associated with Scleroderma is Secondary Raynaud's. Do you have Raynaud's? Also one diagnostic test they do to distinguish primary raynaud's from secondary raynaud's in the nailfold capillary test. Scleroderma nailfold's have a distinctive patterns.
Now, Secondary Raynaud's can be associated with Lupus, SjÃ¶gren's and Rheumatoid Arthritis and others like APS . Now these syndromes can have the abnormal the nailfold capillaries as well so....
Frankly, I wouldn't worry to much what they name it as long as they are treating it I am hoping that they are treating your lupus/sclero/whatever and you are just concerned about what to call it. By treatment I mean more than the Prilosec for your GERD.
In the mean time try to worry too much about what they call it and neither Lupus or Sclero is a death sentence just keep this in mind. Watch a funny movie or a horror movie, my favorite, too take your mind off of it.
As far as Depression I am sorry you are feeling that way and I hope you feel happier and at peace very soon.
I hope you get some answers in the next doctors appointment as well.
Posted 16 January 2009 - 03:53 PM
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International Scleroderma Network (ISN)
Posted 17 January 2009 - 03:33 AM
Sorry to hear you are having what I call panic attacks over this....been there, did that too! I'm certain it happened to every one of us in the beginning, how could it not? It's very scary when our minds run off on us with disease symptoms..it's called fear....and it's very difficult to get it back in perspective sometimes, but you will in time. I really suggest not reading everything on the internet (really bad thing to do, scared myself to death doing that!). This is a good factual and knowledgeable site where you'll find everything you need including moral support (stick with it ). Keep in mind that it's a good thing if they do lots of tests on you, it keeps them/you on top of any symptoms. Try not to imagine what might be and to deal with what is, one step at a time...one day at a time the best you can. Take care and keep us updated ok.
Posted 17 January 2009 - 02:42 PM
My advice is if you think that you don't have the correct diagnose then keep going to a different doctor until you get in front of a doctor who actually takes you seriously and checks it out thoroughly. Make sure the rheumatologist is one that specializes in scleroderma so they know what they are looking at.
You have to be your own advocate and fight for yourself. Hopefully for your sake it won't be sclero or anything else serious but in case it is you need to get a diagnosis so you can get treated.
I wish you luck and please let us know how you are doing. You have come to the right place for advice, support, and wonderful people who do care and know what you are going through.
Good luck and warm hugs,
Posted 17 January 2009 - 02:45 PM
Welcome! I'm so glad you've joined us. You've been given some great tips/advice thus far, so I will just welcome you at this point.
I look forward to knowing you better!
Posted 17 January 2009 - 06:18 PM
Welcome. Sorry you are going through a tough time and having more symptoms. It does take a while to get a correct diagnosis for most of us. My understanding is the treatments are symptom related for autoimmune diseases so hang in there and just be persistant. If you don't like the doctors change them. If you do like a doctor and can feel somewhat comfortable with them and they will listen to you then stick with them. Keep us posted on what is happening.
With gentle thoughts,
Posted 22 January 2009 - 07:56 AM
Welcome to the Forum!
I noticed in your message that you were due to go back to the doctor in about a week. If you feel comfortable with it, would you let us know how things went? We are such a family here on the Forum and everyone truly cares for each other.
I have the "sine" form of scleroderma and it took me a long time (several years) and many consults and tests before I was diagnosed. All the advice you've been given is good!
Something important to remember is that everyone's experience with autoimmune diseases is different, including prognosis and progression. Don't lose hope and never ever give up. Two years down the line and I am doing so well that I've told my young (half my age, I'd say) rheumatologist that I plan on attending his retirement party.
(Retired) ISN Director of Support Services
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International Scleroderma Network
Posted 22 January 2009 - 12:26 PM
I also would like to welcome you to the forum. There are so many wonderful caring and compassionate folks here...I can proudly call "family", as I hope you also will, as you become more familiar with everyone.
I can imagine the concern and other feelings you must be having at this point.
However, please know that you do not stand alone as long as you have the support that is here.
I cannot say I know how you feel...but I CAN say that I felt my OWN head spin as I attempted to search out an answer too. Please, just hang in there...you are taking the right steps, as you are already your own advocate in your healthcare. When you DO visit with the dr(s), ask questions. If possible, many of us find comfort in taking someone with us to help take notes/remember what is being told us.
I am so glad you have come here with your concerns.
Please keep us posted?
Posted 27 January 2009 - 06:36 AM
I am feeling better now, emotionally. I think that is because my heartburn is a little better now. I don't hurt as bad constantly so therefore, I don't think of it as much. When it's really bothering me, my mind starts and I try to calm down.
My doctor appointment is this Friday, the 30th. I have to arrive for my bone scan at 8:00 a.m. They'll do the IV part then I leave for two hours then return for the scan (they said about 45 minutes for that). Then, we have to wait until 3:30 for the appointment with the doctor. This is all done in Dallas and we live 1.5 hours away. So it's gonna be a long one, whew! I'm thinking MALL!
I'm trying to stay positive. A friend of a friend was recently told she has Lupus and ?. Found out she is seeing the same doctor. So that's going to be helpful too. Maybe some girls days out at Presby Dallas!
I know one thing. It does help to share and here other stories from people who really "know". It's so hard for others to understand this. I know I really didn't understand when grandma and momma talked about there aches, pains, sleepless nights, etc. But I do now. And I think there is so many people out there with autoimmune diseases that probably don't have a clue what's happening to them. So I'm at least thankful that I knew where to turn.
Right now, I'm on Plaquenil 200 mg, twice a day. Celebrex twice a day (although, I'm only taking it once a day, that seems to be working). Aldactone 50 mg once a day (not real sure why on that one - I took it before for Acne and I think the old doctor thought it was for blood pressure...so, question for the doctor, can I chuck that one, LOL!!!) Zoloft 50 mg, one a day (he said 2 but the one is working) and I have Xanax 0.5 twice a day if needed. I've been only taking it in the evenings. And after I take it, my GERD symptoms ease a little. So that tells me that stress is definitely a little of a factor in physical symptoms!
The plaquenil is helping some. I keep wondering why I'm taking it. I've already forgotten how my hands and feet would hurt and muscles would ache. So, I think it's doing it's job. I've been on it right at 4 months now. Not sure I needed the celebrex so may ask him about dropping it for now. Don't need that irritating the heartburn for sure!
I want to do the right thing but I also don't want to be on unnecessary meds!
Hugs and wishes to you all!
Posted 28 January 2009 - 11:47 AM
I am so glad to read that you are doing somewhat better.
I can SO relate to the effect heartburn can have on you, as it affects me the same way.
When I have the heartburn issues running rampant, it really sends me into a tailspin!
It sure is great when it quits...isn't it?!
Yes, it really does help to share with others...especially as you mentioned...when folks can relate/understand what you are saying.
Our relatives/friends can feel sympathy, yet those who have the experience of some of what we are experiencing is a consolation. Plus...it's amazing the things that they may have tried that we may not have known about!
Take care, Mia and let us know how things went, on Friday.
P S Treating yourself sounds like a terrific idea! I'm not happy to hear of your friend's diagnosis of Lupus...but I AM glad you have the same dr in common. Hopefully, you are able to help support one another too.
Posted 28 January 2009 - 12:20 PM
I am so glad you found this forum! Everyone here is very helpful and supportive. It sounds like you have a full day on Friday with your test and appointment. What a great idea to make it a girl's day out. Your great attitude and sense of humor will go a long way in helping you deal with any unanswered questions. I hope your appointment goes well with your rheumatologist and the prognosis is good. Our first inclination is to find out as much as possible about a condition, but the volume of internet information on scleroderma and lupus can be overwhelming. Don't get caught up in all the possible scenarios, as you can end up overly stressed. You are on the right path to getting a proper diagnosis and treatment. I wish you the best possible outcome.
Please do keep us posted!!