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systemic scleroderma


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Old 07-21-2017, 07:19 AM   #1
chillibell
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systemic scleroderma

Hi, I have been diagnosed with this for 32 years. I don't have the characteristics. Hands not curled, but thick skin around the fingers. I have poor blood vessels, and blotchy purple skin on legs, sometimes blue feet. I have had deep seated pain and fatigue throughout the years. I also have tiny red spots on my face, and purple eyelids. Never taken medication because they all thought I was doing well. The last two years, I have extreme weakness, and hard to breathe, at times I can't talk and breathe at the same time. They think I'm faking it. Emergency room sent me home for wasting their time. I am gutted, it felt like I was dying and nobody believes. I have some test results, and would like your opinion. My ANA has always been nucleolar 1/2560,and still is. However, there's also a second one no one ever told me about. Speckled 1/2560. However, I tested negative for scleroderma specific antibodies, ena was negative, lupus negative, c3 and c4 normal, c reactive protein normal. AntidsDNA normal. No thyroid problems, no coeliac. However, serum beta crosslaps high at 546 (<400). Parathyroid was double normal, and calcium one number higher than normal. No one discussed these tests with me, my rheumatologist claims he forgot to bring them down and I should see him in six months. I'm not going back, and am on a waiting list to see a different one. Do you think I don't have scleroderma as I had negative tests, which I was told should be positive. Could they have misdiagnosed me for 32 years? I really feel I'm near my end, and I'm afraid, and my GP thinks I'm exaggerating. I'm wondering about vascular diseases, when I put anything heat related to my skin, a blotchy red patch appears

Last edited by chillibell; 07-21-2017 at 09:56 PM. Reason: adding

 
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Old 07-21-2017, 07:52 PM   #2
chillibell
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Re: systemic scleroderma

I'm just adding to this my symptoms over the years. Ulcerated esophagus, which I get dilated every couple of years. Strange thing a barium swallow said no strictures. Sometimes I choke on food, or my swallowing muscles don't work. I get sudden fast beating heart, almost to heart attack, then it goes back to normal. I have bad lungs because I used to be a smoker, I quit years ago, but the damage is not from scleroderma. The weight issues bother me. I go to getting called anorexic, then overweight, and anorexic again. I am a very healthy eater. I keep saying it's like I blow up with fluid. Sometimes my eyes close shut, but never both at same time. I lose strength, my legs tire, I drop stuff etc. At times I get an overpowering sense of smell, so bad that I can't stand it. My right ear rings, and sometimes it sounds like I have a rock band in my head. I have blood in urine, but doctors aren't worried. I feel like I have severe inflammation pain, but the tests for that always come back normal. To be honest, when doctors see me and find out I have diffuse scleroderma, they think I don't have anything to complain about compared to other sufferers. I even feel guilty. I've had pain and fatigue all through, but I don't look sick when I wear makeup. I'm more inclined to believe I have a disease that affects my muscles, but it goes up and down. Original doctors all retired, and I was left to find new ones. They have no respect for me. I am ready to give up, but I have to keep fighting because I love my family. I joined an online support group, and I wrote about my test results, and that I have never taken medication and basically said how I'm worried now etc, and my post never got approved and my isp was banned. I just can't believe some people. I was shocked, and I can't help it if medication was never offered or spoken about to me. I don't sit in a corner feeling sorry for myself. I lived my life, and it was not easy, it was hard and I suffered, but I did very well considering.

Last edited by chillibell; 07-21-2017 at 08:10 PM.

 
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Old 07-22-2017, 02:47 PM   #3
trobb9285
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Re: systemic scleroderma

Please try lemons (2) squeezed into pure water and eat healthy foods////cut out wheat and sugar as much as possible.

Last edited by moderator2; 07-22-2017 at 06:05 PM.

 
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Old 07-22-2017, 06:52 PM   #4
chillibell
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Re: systemic scleroderma

Thanks for your reply. I'm gluten and dairy free, and I am easy on sugar. I will try the lemons if they don't aggravate my esophagus. I know junk food doesn't make me feel good. I appreciate you took the time to respond, I will give the lemons a try.

 
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Old 07-24-2017, 08:39 AM   #5
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Smile Re: systemic scleroderma

Well I wanted to tell you the following but the email on this site keeps deleting itself when I try to send so hear I go again. I had complete bowel disfuntion in 2014, due to prescription opiates which froze my bowels and made it hell for me for a long long time. A GI doc put me on laxatives from hell to include colon preps and Lactulose. I took t his for years,, but then read up on the properties of lemons and thought...it cant hurt! I began notcing after two weeks that Id have actual bowel pains telling me my stomach was working again. It wasn't long after that when I stopped having to use laxative. Also my skin rash (which Ive had for 8 years and is severe) started to heal and my back pain also started to heal. What I discovered is that a lot of the immune stuff they sell in the stores is simply no good BS or too old to b3e absorbed by your body. The vitamin C goes right to the hot spots. It went to my throat too since I have had GERDs for 11 years and now have barretts esophagus (screw spelling). Now when I drink the lemon water I can feel exactly where it is attacking and its great. If you have no energy and cant sleep, maybe you should have your BP checked cause if its high you will never get to sleep and its dangerous. Vitamen E (soluable) with B12 and this lemon juice can get you started. Please let me know how it goes in about a month, Also a good rash cream that doesn't burn is PINKXAV (don't worry about it being called a diaper cream, it even worked in my ears. you have to buy it on the internet cause its made by a pharmacologists and no one wants to sell it in the stores and its better than any they have too so they'd lose sells.

 
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Old 07-25-2017, 07:17 AM   #6
chillibell
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Re: systemic scleroderma

That's really good that you found a natural and cheap way to heal yourself. I have started drinking the lemon water. It's not as acidic as I thought. I did hear vitamin c helps immunity. Although I have such a weakened immune system, despite it's high activity in attacking me. I'm pretty well run down now. The extra vitamin c is probably what I need.
The rash I get is a heat rash, and the little red spots are under my skin, but they don't itch or bother me. I have very low blood pressure, sometimes I faint. I have to eat large amounts of salt as I'm losing it through urine. Thanks for sharing what helped you, I appreciate you telling me.

 
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Old 07-30-2017, 07:02 AM   #7
chillibell
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Re: systemic scleroderma

Just in case someone might find this post helpful one day, and maybe someone can help me understand my blood work. I am experiencing a lot of pain across the top of my back, and I feel so weak. I am going to force myself to the gym tomorrow no matter how much pain or fatigue I am feeling. No doctor can give me answers let alone help. I just embarrass myself when I go to them. My immunity is about shot, and now I have mites living on me, I have bruises where they have bitten me, and I'm awake most of the night with them crawling over me. I have to wash clothes and bedding every day, and vaccum, but my husband has been doing most of that work. I took a course of ivemectin, but I don't think it's helped much.

 
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