Thank you for all the information you have supplied. This is very helpful. I struggle these days to fine words to express what I'd like to say.
Just to keep everyone updated I received a copy of the letter which was sent to my doctor from the neurologist. Explaining he didn't think I had anything neurological wrong with me. He wrote, however if we take this in context of her rheumatological complain't, GI complaints, non cardiac chest pain and chronic fatigue. I think this probably does fit together into the CFS or Fibromyalgia line of illnesses with a lot of symptomatology in multiple domains. This is not a diagnoses to be made in the neourology clinic but I do wonder if thinking about things along this line may offer an easier way ahead for her. I have repeated her autoimmune screen in view of what does sound like a very convincing story of raynauds.
After receiving the letter I called my doctor yesterday to see if if there had been a referral made to see a rheumatologist to help diagnose. The receptionist told me that the doctor said she was not referring me and no further action need to be taken and didn't need to see me. As you can imagine after at last having someone,my neurologist listening and believing there was a connection and putting it in the letter to my doctor I was very relieved. To then be dismissed again from my doctor I feel ill and anxious. I am going to call the doctors early Monday morning to try and get an after 5.00pm appointment after work. I am anxious seeing them as I know they'll judge me and I know it's silly of me but they make me feel like a fraud
Can anyone help me what questions do I need to ask to help me.
Thanks in advance for any guidance you can offer me.
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Yellow-Petal
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I’m sorry that you’re another person here struggling to be taken seriously and diagnosed by doctors. Even with a firm diagnosis or two now I find seeing Doctors increasingly daunting.
The thing is that due to the shortage of GPs in most parts of UK and of hospital consultants too - their idea of urgent is people having heart attacks and strokes or with cancer. Unless you have very clear signs of having a neurological disease eg MND or Guillaine Barre or aggressive MS - or antibodies that shout out a specific autoimmune disease - they seem to hope that you will disappear into the ether by magic. I guess this is because people like us with chronic health conditions generally tick along until we just can’t. Then they scratch their heads and stick us in hospital where everyone scratches their heads and that’s when we tend to get taken seriously enough to prompt further investigations for seronegative autoimmunity.
All I can advise is that you are proactive and you develop as tough a skin as you can muster given that you feel so unwell and your instincts say this should be followed up. No one else is going to look out for us so we have to become our own advocates. If the GP says this is Fibromyalgia or ME then these still need managing by the doctor and should really be diagnosed by a rheumatologist not a neurologist or GP.
I have been under Neurology and Rheumatology in various hospitals for quite a while now but only got a firm diagnosis of Sjögren’s in 2016. I had to keep bothering and badgering for tests and more referrals when I relocated several times - after four hospital admissions in one year - all symptoms and signs pointing to autoimmunity but not specifically to any one disease. I could easily have been fobbed off with ME or Fibro if I’d not done my homework on Sjögren’s and been assertive. It’s awful and exhausting and often downright demoralising - but it has to be done.
So I suggest you look them in the eye and ask them about seronegative rheumatic diseases and explain that you would like to see a rheumatologist under the circumstances because you feel that your symptoms warrant specialist input. Best of luck!
Thank you so much it's knowing others have been through the same journey as me that keeps me going. I just wish it wasn't such a fight to get doctors to believe your symtoms. I work from 7.am until 5.pm mo to fri come a weekend house work.Im finding it hard to even muster up the energy to clean my house I can't hold a cloth to clean fingers swell hot tight and very painful. It doesn't seem to matter what I eat my stomach swells more than double it size. I get tight chest pain and fingers it hard to get my breath. Doctor said it'sthe hiatus hernia. I have had bloods done and all clear. I have been diagnosed by a consultant and have the letter after he xrayed my shoulder and found I had arthritis however they tell me my bloods say I don't have arthritis. I'm sure I have it in my wrists and thumbs as I find it hard opening jars and holding cloths they feel as if they'll snap. My fingers ends are all dry cracked. I have been told I have non alcoholic fat on the liver I am not over weight. They also found a small 2mm nodule on my lung. Which they said they scan again in 1 year to see if there is any changes as this could be new.
Read up about seronegative autoimmune diseases before seeing your GP. Particularly Rheumatoid Arthritis and Sjögren’s because at least 30% of people with these are seronegative and Sjögren’s is often misdiagnosed as Fibromyalgia or ME. X
It currently takes an average of seven years to diagnose lupus. Don't feel disheartened as you are trying to get to the cause of your symptoms - keep pushing!
Writing down notes and questions that you would like to discuss is a good way of making sure you get the most from your medical appointment. We published a blog article which contains helpful tips and information which I hope you can read before attending your appointment: lupusuk.org.uk/getting-the-...
I managed to get an appointment at the doctors this evening. When I first went in she was quite negative about the comments my neurologist had wrote about fibromyalgia telling me how it's a all over joint pain that can not be probably diagnosed and nothing to fix it. She then went on to say I didn't have arthritis I stood my ground and asked her to read through my notes. She did and found arthritis in the AC joints which she said it's not rheumatoid arthritis. She was dismissing everything I was saying.
I asked her to look at my hands and see my nails growing in to my fingers again she said cut your naiks straight across and not too short no explanation why it happens. she wouldn't even look at me. Until she look up at my face and saw the butterfly rash across my face her attitude towards me immediately changed. She's booked me in for an xray on my knee and big toe tomorrow and is referring me to a rheumatologist. She has asked me to make another appointment with her in two weeks so we can talk about my brain fog and other worries as well as get results from xray. I couldn't believe the change of heart. I feel relieved tonight after a very stressful build up to see her. Thank you all for your guidance. I stood my ground and to be honest it was the rash that helped for once.
You go..Lynn So basically you politely stood your ground and got the right result seeing a Rheumatologist is eye opening they insist on their own blood tests and you get answers for all of your symptoms rarely do gp's have all answers. At least they listen to all your back story Its impossible to account for symptoms when there's so many. I'm not in the place I want to be but I'm receiving treatment all though I've got loads of problems and it's easy to get defeated. There's a ton of things I can't understand especially when you have brain fog. I wish you all the best and go to your Rheumatologist with everything wrote down if you think you might forget. Don't worry about the lung nodule I had one they frightened me with call backs only for them to say it was ok. Sometimes things sound worse than they are if that makes sense. Be strong.x
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I'm finding it impossible to cope with my daughter's school. 
My Rhuemy won't see me.. ???
Prof Neil Scolding 
Feeling overwhelmed and anxious with a constant lump in my throat.
What should I do
