Morning all. I haven't posted for a while but have been following all the advice from this site. I felt that my Dr gave up on me as i havent heard from her in 8 weeks now. I decided to pay privately to see a rheumatologist as it seems most of you were sent to one. What a relief to talk to a person face to face at last since my diagnosis in November 2020. 45 mins with him plus a short examination really helped me. He put me on 9mgs for one month then advised to come down to 8 for another month. He said he will see me in 6 weeks if I think I need to but recommends a brain scan due to my very bad heads i have been experiencing since diagnosis and the fact I suffer from vertigo. The copy letter went to my Dr two weeks ago but I've heard nothing from her. I think i shall continue to pay to see him while i can as it has really reassured me. I feel so well at the moment but i will start to get nervous when i come down on the steroids and the adrenal glands start to kick in. I'm off for a cateract op tomorrow but the rheumatologist sent a copy letter to the surgeon also. Makes me feel so much better knowing somebody is taking note at last. I still think this forum has given me the best advice while going through this illness. Thank you all.
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Cosmos22Marigold
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Glad to hear you had a good appointment with Rheumy….pity you had to go down the private route, but it got the result you wanted so I guess that’s the main thing.
Good luck with your cataract operation and the scan, please keep us informed.,
The following might be useful for you in regard to your vertigo. This research was only concluded within the last 18 months and it is quite possible your medics have not seen it yet.
8th Cranial Nerve. The full report can be found be following this link:
We ask that if you have printer, to download and the paper and take a copy to your Medical Team, this will disseminate this progress quickly. Put in an envelope and next time you have an appointment, just leave it and ask that they read it when they have the time.
What a relief it must be to be listened to and to know you've got a Doctor who is on the ball. Shame you had to pay to get there but I'd have done the same. Hope all goes well.
I think it is a bit of an exaggeration to say most are sent to a rheuy - that really isn't the case in the UK. That US contributors are under rheumies reflects the system as much as needing to see a rheumy
I just saw that a lot on the forum go to see their rheume so i thought that was the procedure. Obviously not in the uk but it did help me. When i phoned the private hospital they said that the person i need is Mr Tom Walton who knows about PMR and since then have found that a lot of people think he is good. I certainly did. Thanks for your reply
Firstly good luck with your cataract operation. Mine’s been postponed until next year. Does your Private Rheumatologist have access to a specialist ultrasound scan for you? I feel that GCA has been kind of stalking you for a while, or perhaps Large Vessel Vasculitis. It would be a relief to have those results. I was diagnosed with GCA/LVV that way. I also had a brain scan where nothing was seen. My large cell vasculitis was spotted in my left armpit by ultrasound. So glad that you have a doctor you have faith in and you can feel things progressing. Make full use of the good chap.
I have wondered for a while if it is GCA but my Dr never said a word about my bad heads when i kept telling her. I will make use of this rhumy. I know he will look further i nto it. Sorry your op has been cancelled. Mine was only cancelled once but that was from lazt week to this week. Tbanks for your reply.
I am ok with the postponement, the cataracts don’t seem to be growing in the fast way we fear. My optician felt that my disease was too active for an operation at the moment. I am only about a year into diagnosis. My GCA symptoms were not typically cranial, no eye or jaw symptoms, just headaches and feeling unwell after 4 years of PMR . I was on 3 mgs of Pred when diagnosed. My Rheumatologist and I just had a hunch that all wasn’t well. This could easily have been missed. She leaves no stone unturned.
I will certainly follow it up as the headaches dont go away. They feel like a block. No jaw trouble. Just eye and head. I see the forum has added my rheumes name to the list now. He is brilliant and seems so interested in what you are telling him. I dont have to go to hospital until 3.15 today so gives me time to sort my husband out. He has health problems. My eyes came on so quickly but it could be my age together with steroids. Thanks for your info. Always a help.
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