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Almost Diagnosed Now


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#1 Lillskuzi

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Posted 21 October 2007 - 05:24 AM

Hi all,

I have been waiting to see a specialist rheumatologist since the summer, since my local rheumatologist wasn't sure if I had primary or secondary raynaud's.

Let me give you an overview. I've had bad raynaud's for a few years, constipation, heart burn (a lot worse of late) and last winter, quite a few ulcers which got infected. I had Iloprost which helped them heal really well. I also haven't had any periods in years. I'm 25.
I think I have got used to the feeling and don't notice it that much, but wonder if I
All the tests the rheumies did were normal, and back in March they couldn't see any skin changes on my hands. Anyway, my general practitioner thought it wise to get a second opinon by someone with more experience of scleroderma, so referred me to a scleroderma specialist, who I went to see last week.

They took a thorough history etc, but wanted to run their own tests before giving a diagnosis/opinion, though they thought it looked like a mild case of limited scleroderma. So after the appointment, I went for the blood tests, a capillaroscopy and thermal imaging, before going home. I saw in the capillaroscopy that my nailfold capillaries were abnormal; the guy explained how they looked different from those in someone who doesn't have a connective tissue disease.

The rheumatologist said once he had the test results, he'd write a letter to my general practitioner with the results, and would decide what course of action to take from there. But now I am pretty certain I must have scleroderma or an overlap condition, as so many different doctors have said it is likely, but in the past they had no test results to support that. I know I don't have any medical training, but from what I can understand from what different doctors have said at different times, having abnormal nailfold capillaries is a definite marker of a connective tissue disease, principally scleroderma.

So now I feel a bit weird. Kind of in limbo, knowing, but not officially knowing, until the letter with the results comes.

What really still messes me up is that my general practitioner was keen that the rheumatologist gave some thought to the fact my periods stopped years ago, to see if there was any possible connection with scleroderma or any of the related conditions. I have had all the standards tests for amenorrhea through an endocrinologist to try and work out why my periods stopped, but they have all come back ok. Anyway, this rheumatologist said he couldn't think of why that would be scleroderma related, but that he would check some things and make sure. (I wish I knew what he was going to check). He said if he couldn't throw any light on it, then my general practitioner should refer me to a more specialised endocrinologist in a specialist unit, as he thought thay at 25, not having any periods was a big deal. You are telling me?!!!!!!!!!!! I am the one who has been proactive and persevering for years perisitently seeing my general practitioner, insisting there was something wrong not having periods (i.e. not just stress etc as I wasn't stressed) and with my gastrointestinal problems as I had done EVERYTHING to improve the constipation, and NOTHING worked, and that is so abnormal in a very active person who drinks litres and litres of water a day, and eats more fruit and veg than you'd find in a huge orchard and allotment combined.

In a way, now I have "almost" been diagnosed with limited scleroderma, I feel I am halfway to working out what is going on inside. I had kind of been hoping that the rheumatologist would say scleroderma has caused my periods to stop, and then we would have the answer. That is also what the endocrinology team were hoping too, as they said they just kept drawing a blank and didn't know anymore what to do. I guess it is back to square one with the amenorrhea, and a big hope that I will see someone soon who can help.

By the way, I have a new general practitioner now. So the one I was pestering for years with my complaints about constipation and amenorrhea is not the one that I have been seeing since I was identified as having raynauds. The new one is fantastic. The last one was good, too, but he didn't have a chance to even think about scleroderma as I never mentioned my cold hands or ulcers to him. I thought it was a lot less important than the amenorrhea and didn't want to plague him with other complaints that I wrongly assumed we could do nothing about.

I don't know if you can sense my mood from what I have written or not. I will try and sum up:

messed up, frustrated, frightened, relieved, kind of trying to come to terms, disbelief that I can look after my health and lifestyle really well, but that things are going on inside my body that I can do nothing about, pleased to know I haven't been wasting the doctors' time these last few years with so many appointments, but no real outcome.

And now all the questions start, and ones which I am not even going to write here as I am too scared to hear the answers. I don't want to get too scared, and spend my life worrying about what might happen, rather than enjoying life and getting on and doing things. But then I also like to be informed, and I feel that fore-warned is fore-armed. I will ask my general practitioner these questions, when I am in strong frame of mind.

I was wondering though, does it matter if your hands are cold? Sometimes, people tell me my hands are freezing (even this rheumatologist told me that, and I said to him that he must say that to a lot of people in his job, but he said even that accounted for, they were really cold, and the hospital was really warm). Anyway, if you don't have any ulcers, are your hands being damaged by the fact they are cold?

I just realised how much I have written, and hope you don't mind. I don't like writing about myself and to sound moany or anything, but on this occasion, I had to let it all out.

Thanks for listening :-)
Susie

#2 peanut

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Posted 21 October 2007 - 08:59 AM

Hey Lillskuzi,
I know it can be rather frustrating being in Limbo but I'm glad you're almost there and I'm glad we can be here so you can let is all out...

Cold, cold hands or Raynaud's is a disorder of the blood vessels in the skin. During an attack, your blood vessels narrow, which restricts blood flow to the affected areas. I'm not a doctor but I believe that over time can cause damage. You definitely should tell your doctor about your hands... after all you only have two.

I hope things work out with your new general practitioner.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#3 MicheleM

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Posted 21 October 2007 - 10:04 AM

Hi Lillskuzi! I think we have all been in your position once or twice along this long road of inconsistency, misdiagnosis, diagnosis, prognosis and all the rest! You are in a terribly difficult place right now being so young and in a way it's actually good to be trying to get a grip on what is or isn't going on. I wish that some of the information available today (which may confuse the issues somewhat) were available when I was experiencing my first symptoms. I don't know, but would like to think that I may have choosen different therapies based on an informed choice rather than throwing darts at a board to see what works. Many of us have positive then negative results or false positive or false negative results. It's such a difficult thing this amazing body of ours! I think you are doing the best you can with the situation you are in ... take that and run with it. Try not to be too hard on yourself, stress plays a huge factor in every aspect of healing. I had always had bowel issues even as a little one (so many years ago) and once I started taking probiotics (pill form) I seemed to be well regulated. So there's a natural thought for you to think about! I don't know if this helped much, but I feel for you and hope you find some solace in this message!
Soft hugs your way,

Michele

#4 lizzie

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Posted 21 October 2007 - 11:01 AM

Hi Lillskuzi, although its also frightening , being diagnosed must be a good thing, you are no more ill, than you were before the diagnosis but now you and the doctors know what you are dealing with so can be proactive in preventing further problems. I know it is natural to worry about what might happen and imagine the worst, but you really should just try to take life as it comes - You may never get any worse than you are now. Re the cold hands - It is important to try to keep them as wram as possible even if you haven't got ulcers, as unlike primary raynauds in which there is no permanent damage in secondary raynauds further damage to the blood vessels can occur and exacerbate the problem.
Lizzie

#5 Lillskuzi

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Posted 22 October 2007 - 05:58 AM

Hi Peanut, Michelle and Lizzie,

Thanks for your replies :-)

I feel so much better today, now I have got it off my chest. People go through a lot worse so I shall moan no more.

Thanks Lizzie for the info about the cold hands...I wasn't aware of that.

Stay happy
Susie