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#1 asianfunnybunny



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Posted 18 March 2009 - 10:54 PM

Hi I'm new here and this might be a bit long. This will sound a little strange or maybe not, but I know without a doubt in my mind that I have systemic sclerosis but have not gotten diagnosed. I started having problems almost 4 years ago now and only now is there any "physical evidence" on my skin. I already knew, but I guess you can say I'm sort of relieved to see the shiny skin on my legs (since I feel completely validated now) .

For me, it started with painless swollen left cervical lymph nodes that eventually became very hard and immobile so of course I freaked out and wanted a biopsy. Well that biopsy came back as dense fibrous tissue. I do find this to be very odd since it wasn't a reaction to getting sick and it was completely random. And no one has been able to explain this really unique occurrence. In the meanwhile, I also became very fatigued, my chest and upper back really hurt and my muscles were very weak and everything around that area felt very tight, stiff, and constricted. I also noticed very hard lumpy breasts which after testing was told I have fibrocystic breast tissue. But I don't have any pain and the breasts are permanently lumpy and hard. I also had achiness in my legs at times (a few times my legs got so painful they burned and hurt a lot) and noticed mild swelling and very dry itchy skin mostly in the legs but the hands as well. I also noticed my face felt dryer and tight and was becoming poreless (I always had very oily big pored skin, so I was actually happy about the appearance at the time). I also developed GERD and noticed I got constipated frequently. I'm not sure if I have Raynaud's but my hands and feet will get cold and numb very easily and turn white and my hands will get tingly after they warm up. And really odd, my thighs sometimes get very very cold and turn purple and will hurt but this only happens occasionally. And finally, I was having heart palpitations and chest pain I'm sure was/is not muscular or related to GERD.

I of course still have all these symptoms, but I seem to be have "stabilized" or either that I have adjusted to it. I no longer worry as much. I just get frustrated because I haven't been diagnosed. All blood tests are normal. ANA is negative. But I do have that odd biopsy results and now the fact that my legs are very shiny and tight, I may be able to get the diagnosis. The only reason I want it is because the doctors I've seen in the past don't believe me. I also know that it is important to keep an eye out for other changes internally and if I don't have the diagnosis, I feel that I may be overlooked. I also know that I will need some type of treatment in the future. Right now, I'm fine with dealing with this without medication.

Another thing, I know my mother has it as well and again, she doesn't have a diagnosis. She is suffering right now with terrible itchy skin on her cheeks. Her skin on her face is very tight, dry, hardened, and thick yet again no one seems to notice except me. Her dermatologist really stinks in my opinion. He told her its old age!! Granted, she is 66 but she has this similar skin on her legs and arms and hands and her fingers are slightly bent!! So its completely obvious but she never mentions these things to her doctor just the fact that her skin is itchy. I think some of it too is because her English isn't that great. So now, I go with her to all her appointments. I get so mad because I've told her she has scleroderma but she doesn't understand and also feels all her symptoms (since the age of 40 is when her symptoms first began minus the skin symptoms; that came only within the past 5 years) are from old age. Also her doctor has recently realized her very very high uncontrollable blood pressure is caused from a badly damaged kidney. The renal artery is very narrow so she has to have surgery. Also, her left side of her heart is all "dense fibrous tissue" and her doctor chalked it up to years of high blood pressure. But since finding out the newest problem with her, I am very determined to insist on a diagnosis of systemic scleroderma for her. I feel that enough is enough and that it needs to be known to the doctors since they obviously aren't too bright. (not the ones me and my mother come across anyway!!!) Actually, her primary care physician is kind and seems smart but a lot of it I think is my mom and the fact that he isn't knowledgeable in scleroderma. She doesn't care since no one in the past was able to help her out so I think she just gave up. I'm sure her doctor will actually listen to me when I tell him and he probably might even believe me since its so obvious and especially with her kidney being the way it is. I think if you are not looking for the zebra, you just overlook it even if it is staring you in the face. This is the case with my mom. And now for me, the skin changes are obvious. Even my boyfriend now believes me because he commented on the way my legs looked the other day and said it was really odd and not normal. But he has been supportive anyway, but I think now he truly gets it and understands which makes me feel better.
My primary care physician is a very sweet woman and she listens to me and has been trying to help me find answers. But she didn't take me seriously when I told her I knew it was scleroderma. I understand though since at the time I had nothing to go on except what I was feeling and the odd biopsy. But I feel comfortable with her though and I will be going back to the rheumatologist. This time though, I think I have enough proof. I actually want my mother to get the diagnosis and then I think that will actually also add to my proof.

Also I am 7 months pregnant right now with twins and am super excited! Two little girls and my first pregnancy! I was a little worried at first about my health but so far so good! I have noticed though that this when my skin on my legs have changed and became super shiny now! So I think the pregnancy might have made me a little worse or it could just be that I've been progressing regardless. And swelling of course is pretty bad now since I'm pregnant!! And my hands feel very stiff now and hurt so I'm a little concerned with that. But overall the happiness has taken over and I am a much happier person than I was a year ago. I feel content and feel fine with my self diagnosis (it will be made official I know it will). I also didn't even expect to get pregnant because of endometriosis. I had surgery to repair the left fallopian tube because it was very ballooned probably due to a cyst that burst (I was getting very large cysts, not fun let me tell you!!) and then two months later got pregnant and with twins!! Quite crazy since I didn't think I would ever get pregnant the natural way which had also added to my frustration and depression within the past few years. I'm also at a good age (25) so I'm happy that I will have the energy (well more so than I would in 10 years I'm sure thanks to scleroderma) but I actually haven't been to bad lately. I'm not that tired only sometimes. I do have the very itchy skin still and the swollen legs and feet and hands are uncomfortable for me since I know some of it is being made worse by scleroderma. But my blood pressure has been normal so overall I'm good to go and the babies are growing and doing awesome!!

I feel everything happens for a reason and I have been given my two little girls for a reason. And I would rather have it than my loved ones having it. Unfortunately my mother has it and I worry about her a lot because of her badly damaged kidney and I know she has it pretty bad. But it has brought us closer together and I know after the babies are born, that will also bring us closer! I don't feel as alone since I know we both have the same disease.

Well thank you for listening and I know it might seem strange that I diagnosed myself for some, but sometimes you have to search for answers on your own because doctors don't always listen and they certainly don't know everything. And of course this disease comes on so differently for everyone and I think most are not textbook cases so its such a misunderstood disease and most doctors are not familiar enough with it to even begin to suspect it let alone diagnose someone. And its so uncommon, although, I'm sure there are many out there who just never get diagnosed or even know they have it!!

And if anyone has had the odd lymph node biopsy results like me, please share! I'm interested to know because I can't find any documented cases of it and even the doctor who did was very baffled because at the time, we both thought it was something very bad. (At the time I only had fatigue, hard swollen lymph nodes that didn't move and itchy skin, so if you don't know, those are all symptoms of Hodgkin's and lymphoma!! I was very scared at the time but very relieved when I got my odd biopsy results only to get depressed later because of worsening of symptoms that now I know are scleroderma!!) Anyway, I guess you really never know what might happen or how your disease will start out!! it's obviously so individual for everyone!! No wonder doctors have a tough time figuring it out!! And why its so frustrating for us!!

Again thanks for listening and I will be on here from now on maybe not too often but occasionally!!

#2 Jeannie McClelland

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Posted 19 March 2009 - 04:22 AM

Hi AsianFunnyBunny,

Welcome to the Forum! I'm sorry you are having to worry about scleroderma for yourself and your mother, but happy you found us.

Congratulations on your imminent twin girls! That's wonderful and very exciting. Have you decided on names yet or are you waiting until they make their appearance?

Have you and your mother consulted with a rheumatologist that specializes in autoimmune diseases, particularly scleroderma? I think you already know that it will often take a group of symptoms together to get a diagnosis. Sometimes it also takes finding the 'right' doctor.

As for the lymph node biopsy, strangely a friend just had 2 lymph nodes biopsied with the same results. In his case, they think it may have been something as simple as an unnoticed spider bite.

Again, welcome to the Forum! Let us know how you and your mother get on and when the babies arrive!

Best wishes,
Jeannie McClelland
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#3 Peggy


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Posted 19 March 2009 - 05:12 AM

Another way for your doctor to check on a definite diagnosis of sclero is to have a skin area that is affected biopsied. That's what they did on me; my ankles were swollen like basketballs so they took some skin from the top of my foot and ankle and did a biopsy and it came back positive for sclero.

Good luck to you and keep us posted on how you are doing. Congratulations on the twins!!!!

Warm hugs,


#4 Penny


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Posted 19 March 2009 - 10:49 AM

Hello there, AsianFunnyBunny and welcome to the Forum!

I am sorry that you are going through all of this but want to let you know that you are not alone, this is a group known for spontaneous hugging and comfy shoulders for crying on when needed.

Congrats on the twins!!! I know that you must be very excited and we will want all the details (think of us as nosey Aunts and Uncles) like due dates and names and weights... all the fun stuff!

I know what it is like to be in diagnosis limbo, being a charter member of that club myself, and know the frustration of feeling your body doing strange and sometimes frightening things with no rhyme or reason but just remember that there is an answer out there... sometimes we just have to thin the herd of zebras to find the one with the right stripes.

(((warm gentle hugs to you and your precious cargo)))

#5 Amanda Thorpe

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Posted 19 March 2009 - 12:47 PM

Hello Asianfunnybunny

There are some great names on this forum right now! Welcome and glad you've found us. How frustrating for you that the lack of diagnosis has spanned two generations as well as similar symptoms.

Jeannie is right you and your mother need to see a rheumatologist that specialises in sclero.

I was also diagnosed with a biopsy and amount of skin involvement, I have a negative ANA.

I understand the frustration of no diagnosis, as awful as hearing sclero was for me it would have been worse to have shuffled out of the rheumatologist's office with an "I don't know" because once they know what it is they can treat it.

By the way twins are most excellent, I am one, identical to boot! Are your girls identical or fraternal? Either way it's twice as nice!

Take care.

Amanda Thorpe
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