Newly diagnosed

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Hi. Am so pleased to have found this sight. I have just been diagnosed with limited scleroderma and at a loss as to what this condition is all about. I have severe raynauds,fingers and toes with tight skin, have the antibody centromere and have recently had carpel tunnel op on both wrists and fusion in my right foot. Am now suffering from tendonitis is this also conected.

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  • Posted

    It is possible that the symptoms are related to your diagnosed localised-scleroderma. 

    More information check here:

    https://patient.info/health/localised-scleroderma-morphoea-leaflet

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    • Posted

      Hi rocky thanks for the reply. My scleroderma i am told is systemic (limited not diffuse) need to look it up. I was hoping someone on here my also have this autoimmune disease and may be able to help me understand it.
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  • Posted

    Systemic would man that your entire body could be affected with this auto immune disorder.
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    • Posted

      Hi. Thats what the doc said. Have been for lots of tests on my internal organs but all look ok. At the moment just involves my hands, arms and feet. I was told it is the one that progresses slowly and everyone with it is different. Seems its rare and not alot none.
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  • Posted

    Hi,

    I have been asked to go for a 2nd opinion but my Rheumotologist feels its Limited Scleroderma. I tested negative for the antibodies but because of my symptoms he has made that assessment. I have the same thing as you do on knuckles, wrists and feet but also tested negative for Raynard's. How were you diagnosed if you don't mind me asking? This symptoms mimick so many...Sjogren, RA...I don't know exactly what it is myself.

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    • Posted

      Hi. I know how you are feeling. I tested positive for the antibody and i have had severe raynauds for many years which now effects all my fingers. I also have just had ops on both wrists for carpel tunnel and big toe fusion on my left foot. I thought these were just symptons of getting older (i am 52) but my doc did the pinch skin test then looked at my nailbeds under a microscope. He then gave me a leaflet on scleroderma pointed out limited and said i would get some apps through the post for my heart and lungs to be tested. I have had these tests and assume all is normal as i have heard nothing back. I now am suffering from tendonitis in my arms and again this seems quite commom. I know very little about this desease but it does feel like it is hanging over me like the unknown. Let me know your symptons and what your doc has said to you. Because it seems rare nobody understands how you are feeling.
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  • Posted

    Hi,

    I have been asked to go for a 2nd opinion but my Rheumotologist feels its Limited Scleroderma. I tested negative for the antibodies but because of my symptoms he has made that assessment. I have the same thing as you do on knuckles, wrists and feet but also tested negative for Raynard's. How were you diagnosed if you don't mind me asking? This symptoms mimick so many...Sjogren, RA...I don't know exactly what it is myself.

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  • Posted

    Hi mitch,

    Thanks for your reply. This is pretty much your discussion and I totally jumped in, my apologies. Its just that I can't find anyone to fully explain what this is beside a pamphlet. My symptoms are as follows:

    - tingling in my hands and pain in my shoulders and wrist only when I wake up. It fades alway to a dull pain only in my knuckles during the day.

    - sometimes I get a pain that shoots from the upper left side of my brow to the back of my head making it painful when I turn my head certain ways. That also comes and goes.

    - my worse symptom is extreme dry throat and nasal passages. I produce saliva although I struggle. It feels like my left side of throat is asleep so it makes it hard to swallow at times. The dryness causes my esphogas to contract. Can't tell what causes it exactly to do this.

    - weigh loss and sometimes loss of appetite

    Xrays were done on Chest, hands and feet and all looks normal except for a small calcification on one of my foot. I have recently done a manometry but still waiting on results. The contractions are the worse. Neurologist doesn't think its neurological. Not 100% on diagnosis. I do have the paperwork on blood results but do not understand how to read them. All i know is that I have a speckled ANA and my rheumatoid factor is elevated. My Rheumy has asked me to seek a second opinion at John Hopkins who has a Scleroderma department but unfortunately my insurance won't cover. Are these the symptoms of the disease? I read so many other diseases and it also seems like those. So confused my doc is leaning towards scleroderma...why?

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    • Posted

      The issues with swallwing are certainly assocciated with scleroderma and calcification. My doc told me you only have to have some of the markets to be diagnosed with sclerodetma. It can make you feel achey, suffer with fatigue and affect your GI tract. He also told me not everyone carries the antibody centromere. Look up crest syndrome and see how your symptons compare. This is another name for limited scleroderma. Let me know how you get on. Scleroderma.org is a useful online site but believe me it is a minefield and hard to get your head around

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  • Posted

    Thank you Mitch. I will definitely go into the webpage you suggested and have my doc test my nailbed. Maybe then I will feel like its more of a diagnosis instead of a suggestion. I have been put on Methotrexate but I have not started to use it as I wanted a more concrete diagnosis. Are you on anything and does it help with the swallowing and nasal inflammation?
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    • Posted

      Hi. No i am not taking anything at the moment. I get a little heartburn but does not affect my throat. I take adalat for the raynauds as this is very painful and go to phsyio for my aches and pains in my arms. My doctor sent me for internal organ tests ie echo heart test lung mri etc and luckly none of my internal organs are affected. He said i will be tested each year to keep an eye on them as there is no cure can only treat the symptoms. Hope everything goes well for you and you get sone answers
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