Newbie, waiting time.

[kes07]

Hi I'm new to the forum. I have had Raynaud's for a number of years but only recently went to see my GP about it. She took my bloods and they came back with high ana and she thinks I may have CREST. I had never heard of it before she mentioned it. She has referred me to a rheumatologist, I got told to wait 6 weeks then phone if I hadn't heard about my appointment. I called them after 6 weeks & was told there is a 7 month waiting list. Has anyone else had to wait this long to be seen?

[fairy56]

Hello kes, welcome to this wonderful site, we are a friendly bunch, and we are always here to chat and support each other. I can only suggest you go back to your GP and tell them what you have been told and ask if they can speed it up for you, if for no other reason than for it to put your mind at rest, take care xxxx

[LucyJean]

Hi there, I completely agree with Fairy56. Speak to your GP and see if they can make a case to get you a priority referral. The 7month wait is for routine appointments. fingers crossed they might get you in sooner. Try not to panic yourself in the meantime. Easier said than done I know!

All my best

Lucy xx

[kes07]

Thanks for the replies, I didn't know if I was being unreasonable to expect to be seen sooner. Feel like I'm in limbo at the moment.

[LucyJean]

Unfortunately, many people find themselves in situation similar to yours with a considerable wait from GP referrals into the system. It is really difficult to have been given a provisional diagnosis and then have to wait to see whether that is the case and what they will do. If the only symptom you have been experiencing is Raynauds then that is a good sign. If there are other things that lead your GP to suspect a diagnosis of Scleroderma then it would be a good idea to go back to them to see if they can speed things up so you know where you stand.

Hold on in there.

Lxxx

[GGhere]

Hello kes07 and welcome. Sorry you're having to wait so long for an official diagnosis. It is all very confusing at first especially all the terminology. I was initially told I had CREST then I realised some consultants/doctors/website refer to it as systemic sclerosis and then some just call it Raynaud's & Scleroderma. So much to take in that you can't see the wood for the trees. I was diagnosed about three years ago although I came to realise that it had been coming on well before then. Once you are with Rheumatology things will get sorted and you'll get some better explanations. I think, as others have said, it is worth asking your GP if things can be hurried up. I suppose it depends where in the country you are as to how soon you will get to see a consultant. Once I was with rheumatology It took about a year to get through all the tests they needed to do because of the long waiting times. Do let us know how you get on - it's all a bit worrying at first but things will settle down eventually and you will learn to live with and manage this condition that we're all stuck with. We're all still here years down the line and of course we manage the occasional moan but it helps to come here and get it off your chest. There'll be good days and bad days but make sure to enjoy the good ones.

[kes07]

Thanks for all the replies you've all been very welcoming. I've made an appointment to see my doctor so will see how that goes. I have been getting other symptoms but my hubby seems to think it's all in my head. I'm going to try and stop stressing over it as it doesn't help, will keep myself busy with the kids off for the school hols.

[oi_hilton]

I’m waiting for my first appointment too but my doc wants me to dermatologist first as I have a line indent down my forehead, I’ve had it over 10 years though. I had a ANA result of 0.9 which is above what it should be but apparently is negative and doesn’t suggest immune disorder. I have had chilblains in two of my toes for a couple of years now when it’s really cold, normally these toes play me up on two or three different occasions in a year. My hands went numb twice a couple of years ago from the cold. I’ve now got red sores on some of my fingers and once the sores go my fingers peel. Not sure if that might be related.

What was your score and what symptoms do you get?

[kes07 in reply to oi_hilton]

Hi, I don't know what my score is I don't remember her telling me just that with my blood test result and the Raynaud's plus looking at my fingers which have what looks like dried blood under the cuticles that she thought it might be crest and referred me.

My other symptoms which I don't know if they are related has been pins and needles in my arms and legs and swollen fingers usually in the morning. I also get quite tired.

I hope you get some answers soon.

[kes07]

Little update: I'm not one to usually complain but I spoke to one of the managers of the specialist place I've been referred to. He wasn't happy that I was just given a it could be several months yet instead of more of an explanation. Through complaining to him he has manged to sort me out an appointment for September so good outcome, maybe I should complain more often.

[Jen3131]

Hi, I probably waited 5 months for an initial appointment but it took a further 18 months to get a diagnosis - that's because the regular consultant was on sick leave though. I saw the regular in Jan this year, she did more advanced bloods, and she said review in 4 months. The appointment has just come through for September! Nothing happens very quick. I was put on Methotrexate in January which seems to have made little difference except given me back pain, joint pain and muscle ache which I didn't have before. I just grit my teeth and keep going 😍 I am thinking I might request a tertiary referral to The Royal Free hospital. Seems like a lot of us are in the same boat.

[tanya1981]

Hi Kes,

Your additional symptoms certainly indicate a likelihood for scleroderma or another connective

Tissue disease. However, if you haven’t experienced ulcers, GERD, or any skin toghtenting, etc then your case is probably

Not very severe. You still need to get a proper diagnosis of course but don’t fret over it too much. Are you on any medication?

[kes07 in reply to tanya1981]

Hi, Thanks for your reply. I'm trying not to fret over it but can be difficult sometimes especially as I'm one of those people that worry over everything.

No I'm not on any medication the doctor didn't want to put me on anything until I've seen the specialist. The only symptom at the moment I find annoying is the pins and needles as I get it at night and it keeps me awake. I'm hoping they can find out what causes it but I think it might be hormonal because I tend to mostly get it before and during my period. Hopefully I will get more answers in September.

[tanya1981 in reply to kes07]

Good luck with the appointment - keep us posted

[kes07]

UPDATE I had my appointment in August as they had a cancellation. He said I have primary Raynaud's which I already knew but thinks I'm borderline secondary. He said although my doctor was very good with getting the blood tests done he likes to do his own tests and investigation so sent me off to get lots of different tests done on my blood.

He wants to see me in 3 months but the receptionist told me the waiting list was still January, I did however get a letter a week later with an appointment for November.

So still don't feel like I have all the answers yet but seem to be going in the right direction.