After 21 months i am still waiting to see a Rheumatologist in Wales (UK)

[Raindrop]

Justy,
Several things I had thought of were by now mentioned by other people. I find the ANA test confusing
and non-specific. Sure seems to myself that I have some strong Lupus symptoms, and I keep asking
about 1 x year for the test. However, I am just told it did not show positive for Lupus. Are we to ask
specific questions beyond that? (People have mentioned a "speckled appearance" etc.)

I just want to send my empathy your way, since it is so hard to have so MANY various symptoms
and having to wonder constantly *what* all these symptoms represent with so little medical guidance.
Glad you have a wonderful support system in your husband, even though it is *not* the life we would
want to be living. Certainly hope you can find a really competent Rheumatologist. It may take even
seeing more than one, but I am glad you are pursuing this course of action. From that will lead you
to more answers and alas perhaps at least eventual clarity. BEST of luck to you Justy!
Don't give up the search for answers!!

 

[Gingergrrl]

@Gingergrrl Thanks for the vote of confidence It just makes me so angry to see the amount of people who are left lying (and dying) by the wayside because some doctors either can't be arsed to do their job of looking after their patients properly or else they are making unfair and incorrect judgements about how ill they 'really' are. I seriously cannot think of any other reasons besides those two.

@JoanDublin Well said and I totally agree.

I have been under a pulmonologist for the past 6 years - the consultant has not been very helpful, and may have been negligent in my case - I had an awful appointment with him last year where he decided to diagnose me with 'CFS' AND THEN SPENT OVER AN HOUR LECTURING ME ON IT

He believes I am not having lung infections (fibrosis on CT scan though???) and that the green gunk, lack of breathin, wheezing is all in my mind and that the antbx I take that help this are working as a 'placebo'?

Wow, that is horrifying! How could he explain the fibrosis on the CT scan as "in your mind?"

I am going to make an appointment to see Dr Nash (Rheumatologist) in Cardiff privately. I have an apt with respiratory nurse next Monday at my local hospital and start oral antibiotics from KDM this week to tackle the Bart and Cpn - then I go for my first IVIG in Brussels in November (I wish that I didn't have to go that far for it - but there is no other option right now...) I have just been ill with extra things on top of the normal health problems since June with no let up, so am hoping the IVIG will help my immune system to stay stronger!

@justy that is wonderful and so glad you will be able to see Dr. Nash and get started on some treatment! That made my day.

 

[WillowJ]

Sorry, Justy, about the pulmonologist--that is so inappropriate behaviour from the doc, though all too common--but I'm glad you're able to see a neurologist and get other care.

 

[wastwater]

You may have one of those hard to find genetic collagen disorders im thinking marfans and related for myself