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Advice ?

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#1 gemma



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Posted 20 March 2010 - 10:27 AM

Hello all,

This is my first post. I actually joined this forum years ago apparently - just goes to show !! I am in the UK.

I have scleroderma it would appear, only no medical help or diagnosis.

My story - I had Raynaud's since I was a child, but it didn't bother me too much. I was otherwise super fit and healthy, although I had a bad - real bad - pollen allergy.

Fast forward to 2003. My whole body systems started to collapse - suddenly couldn't swallow, entire digestive system seemed to pack up, pins and neeedles in legs, curious sharp pain in head, dizzy, very low bp, immense fatigue - help !!!

GP ordered basic blood tests, came back fine, that was it. The first attack lasted about a week in acute form. I went back to work and seemed normal again. Six months later it happened again, worse, and lasting weeks. I lost 2 stone in weight, I developed what I now know to be Sjoegrens syndrome, couldn't walk, couldn't eat, I was in a terrible panic of course, what was it ?

Well, my general practitioner certainly wasn't going to tell me. It was the same routine as before, blood tests, but this time there was a distinct suggestion that it was all stress and in my mind, not that there was any treatment for that offered either !

So I struggled around for some insight into my problems and not surprisingly failed to find one. I got back to reasonable health, but I was now terrified it would happen again - I felt there might be triggers, but what were they ? I sometimes felt I couldn't breathe but so briefly I managed to persuade myself it wasn't happening. I couldn't swallow frequently. My temperature contol no longer seemed to work and I would shiver in a warm room. My legs ached, my bp was very low and I was dizzy. I had immense fatigue at times and couldn't walk far without hitting the wall.

Then 2007 it hit again, with the added benefit of tachycardia episodes when I honestly thought I would die. I saw a cardiologist who said there was nothing wrong with my heart but "you have something wrong with your veins but I don't know what it is".

I have visible broken veins on my face and legs and now I have hard skin developing rapidly on my index fingers and also on my forearm. This you can see !!! It has only happened just now. Does anybody know a sclero doctor in the UK ? I am in a big flare at the minute and I would like some help if possible - it has been 7 years now and I am getting very tired.

Love and best wishes to all.

#2 Shelley Ensz

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Posted 20 March 2010 - 11:48 AM

Hello Gemma,

Well, you've been lurking for 3 years now, it's about time you finally posted -- so great big huge Welcome hugs for you! :emoticon-hug:

You can post in this Main forum, and also in the U.K. subforum, as well. I'm sorry you're so ill, but I sure know what you mean when it comes to having a visible symptom, at long last!
Warm Hugs,

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#3 Vanessa


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Posted 20 March 2010 - 12:42 PM

Hi Gemma,

So sorry to hear you have been having such a tough time.

When I first started having symptons (pins and needles numbness, Raynauds, swollen itchy fingers) I made several trips to my general practitioner before being referred to a rheumatologist.

He suggested that I may have Limited Scleroderma from symptoms as my blood tests were normal and I found this site where various people stressed the importance of finding a specialist. I managed to get referred to the Royal Free Hospital and had my first appointment at the end of January when the diagnosis was changed to Diffuse and have just had a 5 day instay for tests and an Iloprost infusion.

It was really reassuring to be treated in a hospital which is so totally geared up for this uncommon complaint.

Good luck with finding help.

#4 Joelf


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Posted 21 March 2010 - 02:03 AM

Hi Gemma

I'm so sorry to read your post & hear that you've been feeling so poorly. :emoticon-hug:

The very best place for the understanding & treatment of Scleroderma is The Royal Free Hospital in Hampstead as Vanessa suggests. I don't know whereabouts in the UK you are, but perhaps your doctor could get you a referral to them?

I had very basic blood tests in the beginning at my doctors which came back negative; obviously they don't routinely test for Scleroderma as it is so rare, but because I had interstitial lung disease I was referred to The Royal Brompton Hospital where they straight away did the blood tests for auto immune problems & discovered that I had Sclero/Myositis. They then referred me to The Royal Free for a rheumatologists view & confirmation. In my case it all happened fairly quickly within a year; I don't know what I would have done if it had taken 7 years to get the correct diagnosis!! :wacko:

I do hope you can get some satisfactory treatment from your doctor & that you soon feel much better. :)
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#5 Snickerdoodle


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Posted 21 March 2010 - 08:27 AM

I don't mean to butt in, but was wondering about some arm pain that I seem to have along with spasming of the hand with it. It's what you would see in someone with Cerebral Palsy actually. The spot in the arm that begins hurting after the spasming starts in the inside of the arm, half way up. The pain increases and increases, but sometimes grabbing my fingers or hand and straightening them out is helpful, but not always. As time progresses it gets worse. Used to only affect my fingers, but now my hand, and some of the arm as well. Is this related to Scleroderma? It's so puzzling.

#6 Jeannie McClelland

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Posted 21 March 2010 - 09:02 AM

Well, funnily enough, I have the same thing, or something similar. My thumbs spasm into towards the palm of my hand and I can't bend/unbend the fingers. I mentioned it to my rheumatologist and got the famous and nearly universal doctor's reply: "Hmmmm, interesting." So who knows? Maybe, maybe not.
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#7 gemma



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Posted 21 March 2010 - 09:51 AM

I am most grateful for replies, and the info re the Royal Free Hospital, will see if there is any possiblity through the general practitioner - hope springs eternal !!!

To try to strike a more optimistic note, one of the things about my personal experience is actually the long periods I have spent pretty ok and symptomless. I have never been completely well for the last 7 years, compared to before. On the other hand for most of that time I have been able to function pretty normally, although to be fair I don't attempt any great exertions, with blips particularly in the winter months, and then 3 or 4 crises like the one I am in now.

I have read many of the personal stories here and been humbled by how brave and even stoical people are given what they are going through. I note that joint pain is very frequent. Curiously I have - so far - only experienced that once, in the crisis that overtook me 3 years ago, when my right hip suddenly started to hurt like crazy. I remember thinking vaguely at the time "it feels as if my leg is falling off my hip," but such is the nature of autoimmune disease that was the least of my worries at the time. I was more bothered about that normally reliable organ, my heart, and the tachycardia.

Also in that crisis, for want of a better word, I developed Sjoegrens out of the blue - glands swelled, mouth dried etc. But that went away, and I'm not experiencing those symptoms now. This time, for the first time, it's the skin involvement that is startling - such large marks so quickly.

I note that silica is thought by some to be a big cause of sclero. About 7 years ago in the first crisis, willing to try anything at the time, I tried a homeopathic tablet of silica - just one. Don't why I tried that remedy of all of them. I became rapidly even worse if that were possible !

I am sure that stress and cold weather are big triggers for me, and probably for a lot of people, but am intrigued to read that vitamin C seems contra indicated - I regularly take a very moderate amount of vitamin C every day, and have done for years. I haven't for the last fortnight, when my symptoms have come on so big time ! ?

Best wishes to all.

#8 Lynnie


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Posted 21 March 2010 - 01:07 PM

Hi Gemma so sorry that youre struggling with all of this,when all you want is a definite answer to a difficult question!! please ask/demand in a nice way of course that your general practitioner refer you to a good local rheumatologist,i am an ex nurse and luckily have a good general practitioner and I asked for her if she would check my bloods for scleroderma,as my body felt it had gone on holiday and left me at home!!!and had done for quite a while,and sadly it came back positive,but,i have to stress im very lucky to have a lovely consultant whose on the ball,and you have to stay positive+pro active and above all dont give up on finding the answers and leading a positive life +keep a smile on it works!! :emoticons-yes:

#9 Snickerdoodle


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Posted 21 March 2010 - 06:46 PM

Exactly! Mine started with the thumb too, and went on for several years like that. Now it seems to be moving up the arm, and affecting the whole hand, wrist, and halfway up the arm. Almost feels like a tendon is involved now.

I hope you find some answers Gemma. Nice to be here where others understand some of what we are going through, isn't it.