Anybody know a helpful efficient rheumie?
Posted , 11 users are following.
Hi, have been very concerned over last weeks that I may be developing GCA. I have seen two different GPs at my surgery, the first told me I could not have GCA as inflammatory markers were within normal range in my recent blood test . Eileen kindly pointed out that doc was wrong and i went back following day. Second GP didnt really respond to my comment about blood test results ,was very pleasant and reassuring telling me I didnt present like someone with GCA whatever that means and that there was no way she was going to refer me for further test other than another blood test
I accept that i have become extremely anxious, GP probably thinks Im a neurotic nut but I believe that the symptons Ive had warrant investigation or at least an opinion from someone with specialist knowledge. So Ive decided for my own peace of mind and obviously my health and future to find an appropriate consultant, self refer and pay . QUESTION IS does anyone know of such a person in England? I live South Derbyshire but would travel . There are names on the internet obviously but if Ive learned nothing else from this forum and my own GPs over last 18months of pmr it is that the so called experts are not as expert as they should be .
0 likes, 12 replies
lynda62707 joan83529
Posted
hi joan...I don't blame you for ONE moment for being anxious and concerned...afterall, it's YOUR health on the line!!!! if that makes you neurotic, then I guess I can join that same club!
as far as a reference, I'm sorry, I can't be of help...I live in USA. but I DO encourage you to keep searching for another doc!! I can't believe how uninformed the medical profession seems to be on pmr/gca!!
it's really quite Unbelievable!!
nick67069 joan83529
Posted
What are the symptoms that you have that leads you to believe that you have GCA? It is understandable that one fears from GCA because of danger of vision loss. If your symptoms are acute, or if they become more bothersome, then I would not hesitate to go to emergency and sort it out. As Eileen pointed out, lack of blood markers is common in 20% of patients, so if you do another test, nothing new will come out of it.
joan83529 nick67069
Posted
Hi, symptoms , some pain in shoulders and neck , generally feeling under weather and tired for weeks which I attributed to being around young grandchildren with their colds , more recently pain in my jaw whilst eating -.alarm bells rang at that , vague tooth ache , discomfort in my head , no severe pain though , vision disturbance , not the curtain or sight loss but something I've experienced occasionally for years since I had whiplash injuries so didnt panic at that. I can see alternative explanations for most of symptoms , its just the accumulation of symptoms and the potentially dire consequences of doing nothing that are causing huge anxiety .
nick67069 joan83529
Posted
I have seen several doctors prior to be diagnosed with PMR... First I saw family doctor, which attributed all the pains to my activity (too much hard exercise), which I accepted at first. But those pains should go away in a few days. Since it did not go away, as usual, after a week I saw second doctor, who is more specializing in sports activities and got some pain relieve meds... On a third week because it did not work so I saw third doctor, which also said it is from too much activity.
I went to my family doctor and firmly said that this is not related to exercise; I recognize that pain and this is something new. I insisted that he takes more analytical approach. Sure enough, blood test showed inflammation way up and he immediately schedule me to see rheumatologist - but my family doctor already suspected PMR at that point.
I am giving you this , so you understand that diagnosis is not easy. It took literally 4 appointments and 3 doctors before I was scheduled to see rheumatologist. If you don't feel well, be persistent and ask for second, or third or whatever it takes opinion. They don't feel pain, you do. Good luck!
amkoffee joan83529
Posted
if I could have a dollar for every doctor who tried to tell me that I was wrong about what I thought I had I'd be a rich woman. in fact most recently I was in the emergency room having trouble breathing. I told the doctor when he came in the room that I felt I had a pulmonary embolism. he said that I would be more symptomatic and struggling to breath, Etc and he was very clear that I did not have a pulmonary embolism. so for hours he observed me and my oxygen just would not stay up above 90. So after hours of waiting he finally did a CT and guess what, I had an embolism. I think sometimes we just have to advocate for ourselves and push and push and not give up. I can't give you the name of a doctor because I live in the u.s. wish you luck on your search.
Silver49 amkoffee
Posted
That's awful. It would have saved a lot of time if they'd done the CT initially. Is it arrogance or cost saving? Glad you're ok , though.
diana21296 joan83529
Posted
I also saw 2 GPs who just put me on paraceptamol and didn't even do blood tests. So in desperation I went to A&E and the rheumys there tested everything and kept me on a ward all day. I knew I had PMR from a friend's symptoms. GCA needs to be diagnosed quickly as it can affect eyesight, so don't delay waiting for a private appointment...go immediately to nearest hospital.
celia14153 joan83529
Posted
Hi Joan, if it is vision you are concerned about you could go to an optician/opthalmologist. They would be able to refer you to a private - possibly Nuffield - consultant, who would report back to your GP. Whether or not you are right you need peace of mind. Keep us posted.
ptolemy joan83529
Posted
I would go to an optician tell him your symptoms, see what he says and if he thinks there is a problem go to A&E immediately. Going privately interestingly enough can take longer than the NHS if it is an emergency which in my opinion GCA is. Alternately just go straight to A&E.
EileenH joan83529
Posted
If you want to go privately you can go anywhere - though whether your GP will write a referral I don't know, If you were going through the NHS I would say Leeds but the people who are best there do not do private work. My own go-to private recommendation for difficult PMR/GCA questions is Dr Rod Hughes in Chertsey if that is an option? Google "Rod Hughes rheumatologist chertsey" and his website should come up with details of contacting him privately. He is good at PMR/GCA and is guaranteed to listen and make a fair judgment of the situation.
Do you use the HealthUnlocked forum? You would possibly get recommendations for rheumatologists more local to you who do private work there - almost without exception doctors doing private work also have NHS clinics and most will transfer you to their list if they think it is appropriate. However - that also means that a doctor who is poor in the NHS is also potentially poor in their private work and you are PAYING to boot!!
Can you describe the visual symptoms you are experiencing? Have you any headache (not just temporal)? Any other problems besides jaw pain when chewing?
joan83529 EileenH
Posted
visual symptom , having one right now! can see but have a sort of shimmering shape which distorts my vision and is still present when i close my eyes .Affects both eyes Have had similar occasionally since whiplash injuries about fifteen years ago , usually goes if i sit up and hold my head up so always attributed it to some damage to my neck as result of whiplash . Headaches? no severe headaches , just feelings of discomfort , sort of pressure in back and at the moment sides/top of my head but at a level i probably wouldnt notice if i were occupied with somethingother than worrying. Eyesight back to normal now .
EileenH joan83529
Posted
That needs expert input, preferably when it is happening but if it is transitory that obviously poses a problem! Have you been to a optometrist? Like Vision Express or Specsavers since in the UK they can examine the back of your eyes and do most of the tests that eye doctors do so can detect a lot of things GPs can't. My independent optician did a load of stuff for me (almost everything that the local eye department in Italy does, they were very impressed) and a good one is really very useful. if you explain about having PMR and being concerned about GCA you should get a quick appointment and they will be able to tell you a lot of what it may be or definitely isn't.
What I can say is that there are conditions of the neck that can mimic GCA symptoms - including eyes and tongue/jaw. They could also cause the pressure symptoms too. But start with the optician/optometrist.