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Diagnosis issues

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#1 debo_92


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Posted 03 August 2009 - 06:14 AM

I will try to keep this as short as possible. I was diagnosed with Raynaud's during my annual exam this year. I have had symptoms for a good 6+ years but they only occurred occasionally and weren't too severe. This past winter that changed and that is why I brought it up to my primary care physician. I told my mother about the diagnosis and she got concerned because my paternal grandfather had CREST Syndrome (and Systemic Lupus) and he had a very quick (less than a year) progression and subsequent death. His progression included not being able to eat (had a feeding tube), kidney failure (had dialysis twice a week), and I remember his fingertips being basically black and very sensitive. Okay, back to me.

I talked to my primary care physician and he ran the bloodwork to test for lupus and scleroderma and they came back negative. I should tell you that I am on an inhaled corticosteroid for asthma and take the highest dose possible and have for many years. Prior to that I took oral corticosteroids (prednisone) fairly consistently, also for many years. I have been told this can affect some of the tests like the ESR. I decided to accept the test results and just move on. Well my Raynaud's started to increase in severity again. I thought it was odd that it was progressing so quickly all of a sudden and asked my primary care physician to refer me to a rheumatologist about my Raynaud's. He decided, based on my concerns and his observations (he told me he thought my fingers showed some clubbing and that my hands did show some mild signs of scleroderma), that he would refer me. The rheumatologist met me and while he was friendly, most of my appointment was a chat session. He reviewed my medical records, talked to me, and looked at my cuticles and said it was primary raynaud's. He did not do the capillaroscopy. He suggested that each fall I come in for Raynaud's treatment.

My primary care physician had also placed me on a medicine for suspected acid reflux. I have it daily and frequently throughout the day. The medicine did work at first and it has since stopped working; even water can cause a heartburn attack. My Raynaud's is pretty active right now and I have started feeling it in my feet now. It was primarily in one finger on one hand when it started. That is how it was when I talked to my primary care physician during my annual exam but this past winter the frequency of the attacks and their length had increased. I have to take hot baths to warm up almost every night (it is summer!!!), wear long sleeve shirts (even outdoors sometimes), and drink hot drinks to keep me warm. I have this type of skin splitting on my fingers and hands. It occurs in fatty areas such as fingertips and the areas on the palms just below the fingers. It also occurs along joints. Basically they are round areas of the skin that split and it seems split through layers. I would describe it as what a jawbreaker looks like if you cut it in half (only not colorful...lol). There is no pain and tenderness in these areas. My latest one of these (inside of thumb along the knuckle) did have a hard yellow core though and took a little longer to heal. My fingertips are more sensitive than they ever used to be though. I do have the extreme and sometimes debilitating fatigue.

Okay now the question: Am I crazy or does this all sound like something I should pursue with a doctor? I guess I am most alarmed because of the fast progression of my known symptoms and the family history (I do know this is not a hereditary disease but that there is a genetic component to it, sometimes).

#2 janey


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Posted 03 August 2009 - 12:26 PM

Welcome to ISN! Thank you for giving us a little history of what you are dealing with. Sounds like you know what's going on and what to look for. I am no doctor so please take what I say with caution, but based on the Raynaud's, heartburn, clubbing and family history of scleroderma, you might want to get a referral for another Rheumatologist or better yet, a scleroderma specialist. I'm sorry - but from everything I've read - you can't diagnosis between primary and secondary Raynaud's by looking at the cuticles. You might want to take a look at our Raynaud's diagnosis page and Raynaud's disease (primary) vs. Raynaud's phenomenon (secondary)section. On the diagnosis page I found

"Scleroderma Skin Involvement: Fingernail, Nailfolds, and Cuticles. The systemic forms of scleroderma can cause the fingernails to become smaller, and cuticles to become hard or rough. But because there are so many possible causes of poor fingernail or cuticle condition, they are not part of the diagnostic criteria for any form of scleroderma. ISN."

It does sound like your symptoms should not be ignored. If you need help in finding a rheumatologist or specialist you might check out our page on Scleroderma Specialists. You can check to see if there is someone in your area. Please keep after this until all of your problems are addressed. My primary care physician said that all my many problems were due to age (I was 49!), so she ignored the fact that they could be tied together and caused by a disease. I kept going to different doctors until I found one that took things seriously and knew about connective tissue diseases such as sclero, polymyositis, lupus and RA. Once I found him, I was on the road to recovery (so to speak).

Please let us know how you are doing. If you have any questions, do not hesitate to post. We're hear to listen, help and support.

Big Hugs,

Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 debo_92


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Posted 03 August 2009 - 12:48 PM


Thank you for the support and information. I totally expected that the rheumatologist would do a capillaroscopy to see if any abnormalities were present and possibly some other tests. The only other test he did was a bone density test (mostly due to my steroid use and the fact that I have never had one done before). I totally intend to keep looking for another specialist to go to but without insurance my options are limited at this time! I hate not having insurance.

I did forget to mention a couple of other issues I have had. One is that I have episodes where I can't get my mouth open wide enough to place a spoon, fork, etc into it. This usually last for a day or two and then goes away. The corners of my mouth feel like they may split open if I force it and there is severe pain the jaw joints themselves. The other symptom I forgot to mention is that I have difficulty swallowing from time to time. This can happen even if I am just trying to swallow liquid. If it is a problem with liquids I can ease that problem by drinking slower though.

Does anyone here have any personal experience/knowledge of the skin issues I mentioned in my original post?

Thank you everyone!


#4 smac0719


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Posted 04 August 2009 - 12:33 PM


Welcome to the forums and I am sorry you are here because you are having such trouble. I have skin involvement and secondary Raynauds to sclero, but have not had it to the degree that you have. I just wanted to encourage you to seek another opinion (and another if need be). I found that doctors did the tests they thought were necessary based on their assessment of my condition. If they did not think I had sclero, they did not do much sclero related testing. It took me several doctors and a couple of years to get a diagnosis, but I am glad I was persistent. I too have swallowing issues and reflux, but again not to your degree. I would seek a gastroenterologist who knows about gastric issues as they relate to auto immune diseases.
I may have Scleroderma, but Scleroderma doesn't have me!

#5 debo_92


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Posted 04 August 2009 - 04:58 PM

Thank you for your suggestions. I have had two new things crop up over the last 24 hours and I am wondering if they are at all sclero related. One is a small rash on my lower leg. It is red and what I would describe as "peppered". The second is I have 3 red horizontal lines that appeared across 2 of the knuckles on the "non-palm" side of my hand, just below the fingers. I thought I was bleeding but it doesn't wipe off. There is no bruising and I don't remember any injuries today at all. Anyone know what these could be?

#6 alice1


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Posted 10 August 2009 - 07:37 AM

Debo...I hope you will find a scleroderma specialist very soon, the quicker it is treated the less damage it may do.


#7 debo_92


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Posted 10 August 2009 - 08:19 AM

I am really hoping to get a doctor soon myself. However, I don't have any insurance right now. Even if I could get into a community health care clinic, get someone who knew about Scleroderma, and get the care I need...all that will make me uneligible to get health care insurance. It is so frustrating!!!!

I am having Raynaud's attacks by just walking into a grocery store, or even into department stores. I have multiple attacks a day. They are starting to occur in my feet. I have pain occurring in my hands, feet, ankles and chest. I discovered an area under my left breast where I have developed several red/purple spots clustered together. I have two dark purple spots close to that area. Under my right breast I have a dark purple spot. On Thursday night I started developing what I thought was a cold sore on my lower lip. It started secreting a yellow/gold colored substance on Friday night and by Saturday night was gone but left peeling skin on the lip. I have never had a cold sore, untreated, come and go so quickly so I have no idea if that's what it was or not. I have had quite a bit of trouble with my breathing lately and pain in my ribcage area. I have been a severe asthmatic since I was 9 years old so I have no idea if it is from that or something sclero related. My asthma has been very well controlled for over 6 years now with corticosteroids so I am not at all convinced that is what is causing the trouble. I have a few other things but basically the gist of the idea is that I feel like everything is moving so quickly suddenly and that is what is scariest to me. Well that and the fact that I can't even get in to see a doctor!