Advice needed re: talking to my GP - any advice gratefully received

[niky257]

Hi

About 2 weeks ago the Doctor I think agreed I have Raynauds. As well as the hands/feet symptoms, I had recently been experiencing blue lips and numbing of the chin and lips. Today my chin and lips feel quite numb - it does seem to happen when it's windy. I did ask my GP why my lips go blue, she said she didn't know. If I'm honest, these are the symptoms that concern me - the numb sensation in my chin/lips. I intermittently get numb feet too, not when they are cold. The Doc told me to go back in a month - I think this was because she felt I just needed a bit of reassurance. I feel that I'd like to go back earlier and discuss the numbness, but I am genuinely concerned she will feel I am being 'neurotic'. When I mentioned I felt exhausted mos of the time, she tried to put me in the depressed bracket - I have looked at this option seriously to rule out all options - but I just feel so NOT depressed! Life is good, but I am concerned about these new 'sensations' I experience. Advice - shall I hold out the month or go to the GP Earlier? How can I say that I need to understand what is happening when I get these feelings? And I'd like some confirmation it's Raynauds. Thanks so much. niky x

[living-the-dream-ssc-ray]

hiya ! ew that doesnt sound very pleasant for you and certainly sounds like raynauds to me !

I was diagnosed 16 years ago and now try and prevent any blueness as the pain that accompanies it is unbearable.

Have you looked at the raynauds and scleroderma association's website ? raynauds.org.uk ? there is some great info on there as well as you can take some of the imformation leaflets into your GP !

Also - have you been making a symptom diary for you to take to your appointment ? It maybe that you might need some medication to help with your symptoms and by making a diary you can highlight your main symptoms.

I hope this helps. Keep us posted how you get on, and stay warm x

[niky257]

Hi thanks so much for taking the time to reply. I have realised i am in need of reassurance and this site and the people on it is wonderful. I will keep a diary. iam always ina tizz when i go to the docs so i think this will help a lot. Thank you. I will keep you updated and maybe i can offer some advice sometime! i am now popping over to the Rsa website! Thank you x

[zenabb]

I would like to suggest to you that you have a proper diagnosis. See your GP and ask to be referred to a reumatologist. You have the right. And have all the necessary tests.

[niky257]

Zenabb, thank you for your reply. I am going to try hard to make sure I am prepared and feel that I have had questions answered, or been referred to someone who can answer them, Thanks so much. Niky

[Rp321]

I to have the blue lips same as you - I think it's just 'normal' - I found that once I understood raynauds and how it happens I don't worry so much any more so I would defiantly pop to the RSa website have a little read up as someone suggested

[robmccarthy]

I had the same problems with my GP, i gave up in the end and went private to see a reumatoloist, best £200.00 i spent, he gave a letter for the GP telling what test i needed and i was lucky them to be referred to him under the NHS.

Keep pushing them, most GP dont understand it.

Good luck

Rob

[niky257]

Hi - you are right Kaz, I need to understand what is 'normal' - especially when suddenly things are happening that didn't happen before ! Rob - I have wondered about going private, firstly I need to have a good conversation with my GP - I feel more empowered now - thanks to you all - and haven't handled it best in the past. Niky

[alwaysfreezing]

hi sounds like raynauds but you sound a very upbeat person dont worry

[graygirl1]

Hi niky257. You need a big hug which I am sending you this morning. Try not to stress too much, stress makes the condition worse. Your doc seems to be too relaxed in getting you the right help. You need to be referred to a Rheumatologist. They are the specialists in this area which comes under the arthritis centre at your hospital. Some GPs seem reluctant to admit they just don't know much about some things but I hope this is not the case with you. Is it possible to bring your appointment forward and ask someone to attend with you? Having someone with you may give you more courage and support. I am lucky to have a fantastic doctor. She took guidance from my Rheumatologist re my autoimmune disorders and now my health though not good, is now stable. It took eight years.

You will be fine but it will take a little time. Keep in touch with us here. This is a great forum, you will find much of interest and comments and stories to melt your heart.

Good luck nicky257!

[tracynoe]

Hi

I get blue lips, nose, hands, feet and my ears go a painful white I was told that raynauds affects any extremity ie wherever the blood supply comes to a full stop once I was told this a lot of things made sense even the numb tongue.

[cvdd1983]

my doctor looked up all the tests that i needed to have done on the NHS website so he could confirm primary or secondary sufferer, i was then sent to a vascular scientist and vascular surgeon who has now given me a prescription!