Life is passing me by....

[greyhoundlady5]

HELP! I've been trying for years now to get a definite diagnosis. All of my doctors seem to agree that I appear to have an autoimmune immune disorder, but fail to give me a real diagnosis. I just want to have a doctor that will follow thru we me so whatever I have can be kept from progressively getting worse. Whatever it is I'm going downhill quickly. I can barely care for myself anymore. And, I'm so scared!

Right now we are sitting on the diagnosis of Scleroderma. I do have Raynauds, and most of all of the symptoms of CREST syndrome. I need to find another rheumatologist that will be able to help me more. I've seen many different specialists and we've been trying to piece this all together, but it's not fast enough. I'm really failing. I'm so exhausted every hour of every day now. I was able to do more for myself two months ago than I can do now. I have narcolepsy, and I could sleep my days away. I have lists of symptoms and diagnoses. I need to find someone that is willing to go thru my history, and then help to save me, because I'm failing quickly, and I surely don't want to be in a nursing home because my body won't work. Suggestions please! I'm desperate!

[Mylreaclairelee]

I am so sorry to hear of your struggle but it seems a common thread. Getting the diagnosis can take a lot of years. Is it possible to get to the Royal Free scleroderma clinic. It may be worth going the once and then getting referred to a local rheumatologist. That's what I did. You just have to be referred by your doctor.

[jax553]

Hi, Do a lot of research, find clinics that are willing to help you, The trouble is less and fewer people care nowadays, I find it everywhere I go, My Dr offered me drugs from 20 years ago for my psoriasis, I looked gobsmacked, I told them I want a chance at new drugs, not ones I had then which did not work, I think the more research you do may help in the long run.

[zenabb]

You seem to have Raynaud and scleroderma. But you need a good rheumatologist. Go to your GP and ask seriously for one.

[positivedaybyday]

Hi, I paid for a private Dr who took numerous blood tests & diagnosed me with acute difuse scleroderma. I took this to my Dr late June 2017 who had never heard of it. He referred me to the local hospital who after 3 weeks told me I wasn't an urgent case & it would be Oct before I could be seen! I was going out of my mind as the pain was so bad. I was lucky enough to be seen by a fantastic Dr at another hospital in early Aug. I was admitted after a few days! In November it was still progressing so I was referred to Sheffield hospital. I undertook stem cell treatment 25th April this year. It's now 2 months on & I feel so much better though it will be a long recovery. It's SO important to find a specialist as if it's not treated early enough & is aggressive as mine was then it could lead to organ damage. I had to go through numerous tests for the stem cell treatment to make sure it hadn't affected my major organs. Luckily enough I was OK but I really believe if I had waited 3 months for the other hospital I wouldn't have got through the tests. I call it the "silent killer" so push hard to get treated!

[kel55 in reply to positivedaybyday]

this stuck out to me, 'Seems to have an autoimmune disorder...' have you had the tests to diagnose this? and have you been diagnosed with raynauds? and you said some CREST symptoms?

There is a reason why l have asked so stay with me. Do you have any chest pain or discomfort any typical heart attack symptoms

Im not saying it is but when l started along my journey much of what youve said could have been me. l have microvascular disease with Artery Spasms, I also have Raynauds which as everbody knows is Microvascular disease.

it may be just another path to try!

[tanya1981]

Greyhound,

I am really sorry that you feel betrayed by the system. I can assure you there are some very good rheumys so you just need to find them and see them urgently (and yes, that may mean privately). You would have probably heard of Dr Chris Denton in London (Royal Gree Hospital) who is absolutely amazing. There are other others, though, such as Ariana Herrick

In Manchester, John Pauling(Bristol?) - m.youtube.com/playlist?list...

Have a look at the annual SRUK conferences - the above was the one that I attended and made a huge difference.

Wishing you some positive developments real soon

Tanya