JUST DIAGNOSED

[kaabbechjajogefa]

I have just been diagnosed with Raynauds I am waiting to see a rheumatologist who specialises in the condition, in the meantime I wandered if anyone knows if there is a conection between Raynauds and a condition called Haemochromatosis which I was diagnosed with2 years ago

[Hidden]

Hi, well I certainly hope you manage to see a specialist soon, I've been waiting 23 months and next week paying privately to see a Rheumatologist Consultant. I am in Cardiff and the waiting time is horrendous. I was diagnosed by the Dermatology Department 10 months ago. I think your question is so unique only a Rheumatologist could answer. I wish you luck and kind wishes.

[kaabbechjajogefa]

Thank you for responding CardiffLady hope I see somebody sooner than that!!!!!!!!!!!! And sorry you have had such a wait I thought you had to be seen within a certain time when you were referred to a hospital at least for a first appointment?

[Hidden]

In Cardiff we just go on a waiting list. The hospital cancelled 3 times for my appointments with the Pain Clinic so 11 months later I will see them next week. You can see why I'm paying privately to see a Rheumatologist

[tinaparkii]

Hope U get sum good news both of U. I also have been diagnosed with raynauds. Waiting on result as to which I have. Although myself and my gp Although I it is the worse of both. As I constantly in pain in my left hand/arm. I can barely use it. And also get odd ulcers on my fingers to. So have yo be extra careful. Doesn't help as I am left handed as well. But got my follow up appointment end of November. Which is a long time I thought but I only af my nailfold capillaries under microscope on the 2nd of October. So not to bad. I would go private also if I had to wait that long for an appointment. Its wrong av anybody wait so long ain't it. Well good luck to U both.

[sandraj]

I just looked up Haemochromatosis to see what it was. I have had Raynauds (secondary) for 20 years and I have always had an iron problem too. I could not take Iron tablets when I was pregnant years ago. I have high Ferritina level , around 200.

[Philip]

Hi, what a terrible mess the NHS are in, it seems to take a long long time to get to see a specialist, the thing with seeing a Dr privately is the fact that the if you are diagnosed with anything, then it won't be recognised by the NHS until you get to see an NHS specialist., sad but true as this happened to me a few years ago and it cost me to go privately and then had to wait once again to see NHS Dr, crazy world we live in lol, good luck. And I hope you get to the top of the list sooner rather than later.

Philip

[SandraMarie]

Even if you are on a waiting list what exactly are you waiting for? There is no treatment as such (I'd been suffering with it for a good 20 years before it was formally diagnosed) It really is just a case of keeping warm (esp. wrists, which in turn will keep hands warm). You'll become expert in gloves, socks etc layering up and so on, you've just ,pretty much ,got to just get on with it, no miracle cures! Best wishes. x (sorry I don't have answer to your question, but as you've already been told, sounds like one for the professionals, or you try googling it?)

[Rp321]

Sorry to say the oppersite to you sandramarie but - in terms of just raynauds there are things that can be done, you just need to find the right people.

yes it is very very important to dress well, layer up and be sensible about what you do, ie, sking holidays may not be the best. It is important to find out what causes you to have raynauds moments and to learn about how to help ie, gloves for the freezer/ air conditioning if the slightest temprature change causes it.

But there are also medications which can help, no nothing is a cure but things can be made so much betterr.