Update re rheumatologist

[PURPLECROCUS3]

so my GP printed off the correspondence between him and the rheumatologist which I picked up from the surgery on friday only to find it was correspondence from the rheumatologist only.

He started with "you will have correspondence and referrals about "THIS WOMAN"(who does he think he is to say "that woman"?)from previous years.she has been concerned about the change in shape of her facial bones abdominal swelling (not his department) and facial rash,thinking strongly she has Lupus.Pagets disease or Acromegaly.I have been through her investigations and explained why(NOT to me he hasn't)we do not think she has those conditions.she has elbow pains,heel pains and musculoskeletal chest pains.She asked for a review and i have explained -again not to me-that it may not happen but of course i would accept changing this to a referral if you feel it would help/.

Firstly it is not i have been concerned about the change in shape of my facial features,why do doctors always use the word "concerned"?

I know my head has changed shape and that there is pain and deformity to my facial features-nose .cheekbones,jaw ,skull as well as swelling and bruising and /or discolouration,blood clots.my head is painful when in the sun.and the butterfly rash was present on my face when in the sun.

It is not me who thinks i have lupus pagets and acromegaly but the consultants and GPs who have confirmed my symptoms.

re "review" -not asked by me .gp requested referral.first rheumatologist stated "her hands are warm so she does not have Raynauds.My Raynauds was diagnosed in 1995.it is a condition caused by the cold so cannot be confirmed or diagnosed in a warm hospital clinic/room.

the same rheumy also said it is unlikely she has Fibromyalgia which was diagnosed in 2005.

[jujubeee714]

Pretty straightforward. Have her test your autoantibodies and do a full Ana panel to check. Many of us have crossover autoimmune conditions.

[PURPLECROCUS3 in reply to jujubeee714]

blood tests can be non conclusive-sero negstive Lupus/Pagets/Acromegaly

[PMRpro]

Not that I can help I'm afraid but "first rheumatologist stated "her hands are warm so she does not have Raynauds." made me laugh. Thermographical images of my hands graced the walls of the room where the vascular scientist did research and testing at the Freeman in Newcastle as "typical results of positive Raynaud's testing" for years. I have Raynaud's, my hands as I type this are really roasty-toasty - I'm not having a spasm. What a numpty!!!

[PURPLECROCUS3 in reply to PMRpro]

my GP has made a referral to Newcastle health trust/rheumatologist -a different trust .

[MEGS53 in reply to PURPLECROCUS3]

Which one please? I may be able to advise

[PURPLECROCUS3 in reply to MEGS53]

?Newcastle

[MEGS53 in reply to PURPLECROCUS3]

Which hospital within the Newcastle or north Tyneside hospital trusts ??. I’ve seen several rheumies from both groups of hospitals.

I may be able to share mho of the Drs 😬😬😬

[PURPLECROCUS3 in reply to MEGS53]

most probably the Freeman Hospital

[Balahanda in reply to MEGS53]

I have neck dystonia. I get muscle spasms in my neck . Got some injections of xeomin but don’t have much relief. Got done acupuncture also.

But the acupuncture dr won’t take me anymore.because for some reason Medicare is no t paying then. Although I am covered for 12 visit s

[Sheole]

It took me 8 years to get diagnosed. Over the years I was sent to 3 different rheumy. I think diagnosi had to wait till my illness progressed enough to show up on tests. Anyway, the average time to get diagnosed with AI is 8 yrs. So your story is one of many. Stress is a major factor in making all autoimmune worse. Take care.

[PURPLECROCUS3]

reading the other letter in this one he had the audacity to suggest that Ihad PPS(some syndrome)and that i had health anxiety -NOT SO -have a very long list of diagnosed conditions since 1994 =all confirmed by GPs and consultants even the other rheumatologists who now are saying I do not have My conditions diagnosed by them and put questions to who?my GP ?not clear.-= that he asked if i had any childhood trauma, seen psychologist ??claimed I had "Chronic headaches"when I have never had headaches that would make me see a GP. My "headaches" were actually "pain in the bones of my skull"which is how i have always described them.

He had no justification to suggest a mental health problem etc .Where my GP said "elbow pain ,heel pain and MS chest pain," these were not accurate nor relevant as they were all after 2022.it s not only pain in these bones/joints but deformities too.

says he has been through investigations but not everything I have been diagnosed with.scans and X rays are not everything -it is all about symptoms.

I hope when i lodge my complaint that he is actioned against for offensive comments,lies and assumptions etc.

the NHS bang on about "abuse to their staff" but its acceptable for NHS staff to be abusive to patients and no action is taken.