Thank you, Thank you

I posted yesterday "confused and frustrated". Thanks to everyone who replied! I know there is no easy answer, but just knowing I am not alone does help tremendously. I have followed up with the rheumatologist practice, offered to drive to any location, but still no openings until mid-September. I will be eventually placed on a cancellation list, but she could make no promises. I also called another practice in a larger city that is a drivable distance and was told the same thing, first available, Sept. I called my GP office and pleaded that I need to be seen before Sept. The office person told me the referral was marked Urgent. The nurse called me back to say that is a typical wait and she will talk to the my GP to see if he has any other advice & let me know.

9 Replies

  • Hi mo3go7...I'm sure others will be along, but just wanted to say I read your post yesterday, and you're right, you are not alone. In my own 14 month experience with GCA, the most stress and frustration were not caused by my condition, but by some Doctors and the wait times to see them. It's not easy. But it looks like you've done everything you can for now. I hope you get a better response from your GP, and soon. You will get through this. Hang in.

  • Thank you

  • I have just come into this discussion, hope you see someone soon. Please remember you are not alone, are you in this country (UK)?

  • State of Ohio in the USA

  • Yes

  • I will be praying that you get into see the rheumatogist soon. If you lived in Michigan I would get you into mine. I know how terrible it is to suffer from PMR before you get on a reg dose of Prednisone, I couldn't lift my arms to feed myself or get dressed, then I couldn't walk. After a week of 15 mg my symptoms started disappearing. Never be in a hurry to degrease your dose. Keep us updated, we are here for you. 💕 💕

  • Bought my cars there live in Ohio now.;) prayed for your family at father Leo's church.

  • If the referral was marked urgent that is the same sort of wait time you'd get pretty much anywhere I think. It needs the E-word to be seen really fast!

    However - just in case, if you develop any visual symptoms or a headache, jaw pain when chewing that goes away when you stop or scalp pain, then contact your GP and tell them you need an emergency consultation with a rheumy. It could be GCA developing and that is a medical emergency, just like a stroke or heart attack.

  • Just to chime in about wait times. I'm in Ontario, Canada. A friend dropped by last night very upset and crying. She had a stroke 6 months ago and is still waiting for a follow up appointment, the last visit to the neurological was a waste of time, he didn't even have her reports back. I waited for a pain clinic appointment for over a year. Got to the appointment which was better than I expected but my GP has still not received a note from them and my follow up is in October! It's just crazy. Still waiting on my GP for other things and I find out she's gone on holiday. Sometimes I just have a good cry myself, you feel like you're out at sea and slowly drowning.

    Thanks for listening, good luck to everyone,


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