In process of being diagnosed, anyone in Glasgow?

[puggyboy]

Hello all,

very happy to have found this group! I'm just starting the process of being diagnosed, and more than a little scared. Wondered if anyone can offer come advice:

My GP suspects systemic sclerosis, as I fit the criteria pretty well (Reynaud's, skin changes, reflux, etc etc). I have been given an urgent referral, but told that it could be 2 months before I see someone. I live in Glasgow, and have considered going private to speed up the process - does anyone know of a good rheumatologist that does private work? My concern is about time - I'm now getting muscle weakness, and it's a bit scary to just sit and wait.

Thanks

[babyinny]

Hi Puggyboy

I am in Glasgow and just had my first appointment at Glasgow Royal Infirmary in August

I have positive blood test for systemic sclerosis.I had an urgent referral to rheumatologist by dental hospital they referred me to Queen Elizabeth Hospital as I was also going there to see maxillo facial dept. I phoned for cancellation and discovered I had been referred to wrong hospital as they go by post codes in Glasgow so just as well I was chasing it up or would have been waiting forever.Best thing to do is keep phoning the booking office to see if they have any cancellations they can only check that once referral is showing on the system , Do you know what hospital you have been referred to ?Kathy

[puggyboy in reply to babyinny]

Thanks Kathy!

I actually don't know which hospital I've been referred to, but that is a very good idea, thank you My GP is actually based at the Royal, so that would be a good bet.

Thanks for the advice, I'll give that a try...

cheers,

Paul

[babyinny in reply to puggyboy]

Hi Paul

I did toy with idea going private but I had already has so many tests done by dental hospital including ct scan and chest xray as I had a lump on my gum and they were clear .It was discovered by them I had positive blood test for systemic sclerosis.I hope you don't wait to long but defo chase it up if I were you .I had a nail capillary test and hand xray on my first appointment and was told no evidence of SS I have been

referred for lung function test and heart ultrasound and these appointments are in

October so came through quite quickly. Hope you not wait to long and have a positive outcome take care Kathy

[puggyboy in reply to babyinny]

Thanks

Annoyingly I saw a rheumatologist years ago when I first got Reynaud's, but they never bothered doing the nail capillary test, and I don't know now which bloods were done - seems that blood tests are not all that straightforward?

I only found two rheumatologists in Glasgow that do private work so far, and neither can see me particularly soon, so maybe good old NHS it is...

Cheers,

Paul

[babyinny in reply to puggyboy]

I have been told by my GP and by rheumatologist they would never had checked blood for SS .I just got that blood test by chance as dental hospital trying to identify an infection I have in my gum and lymph nodes.Rheumatologist say they go on symptoms before they do the blood test.Basically he checked my hands and tell me I don;t have SS even although I have a positive blood test.I have a lot of weird stuff going on sore hands and feet dreadfully painful sore mouth and tongue and throat , intermittant rashes on my face that come and go.Never the less he has referred me for lung and heart test because of the blood test .I also feel as if my face is getting tight over last week and it is frighten the life out of me . I will speak to him when I go back after my lung and heart tests .Hope you manage to get to see someone soon Paul take care xx Kathy

[puggyboy in reply to babyinny]

Thank you

I did do some reading about blood tests, and it seems that some ways of doing the tests have different accuracies compared to others. Is it possible that your tests were a false positive? Did they do the nail fold capillaroscopy thing? Can totally sympathise, it's the uncertainty that's really hard to bear at the moment. Hope you get clarification soon xx

[babyinny in reply to puggyboy]

Possibly docs say that can happen I had nail test that was clear It is all the uncertainty of course.Did you get any word about referal or do anything further about private consultation? I can give you number for rhuematology at Royal take care Kathy

[puggyboy in reply to babyinny]

Ah, thank you - still chasing up about referral - as I said I may go private, it seems they didn't bother making the referral at all!! And didn't let me know! Not a happy bunny at the moment.

[positivedaybyday]

Hi. The main thing is to keep pushing as everyone is different. I saw my Dr late June who hadn't heard of the illness. Luckily for me I had paid for a private Dr whilst I was on holiday abroad who performed all the blood tests etc. He gave me a copy of the blood tests & a letter to say I needed urgent medical attention. My Dr sent an urgent referral to my local hospital. After 3 weeks they came back to say to them it wasn't urgent! & and they gave me an appt in Oct!!!I I was beside my self in pain & couldn't believe their response. At this stage I too was considering going private.

Luckily for me someone recommended a brilliant Rhuematologist at a hospital near Manchester.

I was seen at the end of July & within a few days I was in hospital! I had so many tests whilst in hodpital. They were so thorough.

After many spells in hospital I was put on Microphenolate which didn't suppress the illness in my case. I was then So lucky to be offered stem cell treatment & had that May of this year. It's so important to keep pushing, maybe find another hospital that you could visit. Good luck, I hope your illness isn't as aggressive as mine. I had no idea what was happening in my body & truly believe if I had waited that 3 months at the local hospital the illness would of spread to my major organs! So keep pushing!!!!

[puggyboy in reply to positivedaybyday]

Thank you for this! And that's a scary story..

I did chase up the referral - good job I did, because it hadn't even been done! Apparently because I said that I might go private if the NHS appointment is too long a wait, they only wrote a letter for a private referral and didn't do the NHS one. And then didn't tell me!

Can anyone recommend a good rheumatologist who actually knows about this disease? I don't mind travelling if I have to..

cheers,

paul

[positivedaybyday in reply to puggyboy]

Hi it's me again,

I can recommend Prof Herrick at Salford Royal Hospital near Eccles Manchester. Her team are so thorough & Prof Herrick is involved in research & is involved in conferences internationally.

It is a long way to travel, hopefully there may be a hospital closer. Try googling Best Rheumatologist near me re Systemic Sclerosis. It's worth a shot. Maybe your Dr could write a letter to Prof Herrick for you to see if she can recommend someone closer for you. It delays things if your Rheumatologist isn't involved or knows enough about this disease..some people have the disease for years without the proper treatment. Again it's dependant on the individual & how the disease is progressing. I wish you all the luck!!!!

[puggyboy in reply to positivedaybyday]

thank you I may well up seeing Prof Herrick, not had any success so far in finding anyone in Scotland... I always knew I was special, but not this special, dammit!!

[Hidden in reply to puggyboy]

I can recommend the Connective Tissue Disease clinic in the Ninewells in Dundee which apparently has the second largest Scleroderma clinic in the U.K - but I don’t think the vascular doctor or the rheumatologist do private work - although worth checking as I could well be wrong.

This would be the clinic run by Dr Colin Baines and Dr Smita Bhat.

[puggyboy in reply to Hidden]

Thank you for this! Dundee would be great, certainly by comparison to travelling to London... I shall investigate!

Cheers,

paul

[Alice1956 in reply to puggyboy]

Hi Paul. Just wondering if you know about our Scottish support Group through Facebook. If you look for Scleroderma and Raynauds Support in Scotland you will find amazing support and information from people who are local to you.Hope you get seen by a rheumatologist soon. X

[Angcav]

Hi puggyboy. I've just come.across this site. I'm from cumbernauld and just been diagnosed with crest disease. I am feeling tired very sore hands that constantly change colour. The worst is the muscle pain and.weakness. also dizziness. Feeling quite scared to be honest.

[puggyboy in reply to Angcav]

Hi there, I'm so sorry to hear that. Currently I still don't have a diagnosis, so I've now idea what's going on. Been discharged from rheumatology now, but I'm getting atrophy in arms and legs, so I'm also pretty scared.

Has anyone mentioned treatment options yet? I hope you can get some reassurance on a way forward xx