Wonderful GCA support

[Saintmalo]

I feel so physically comforted and wonderfully supported by all the replies I have received from my post a week ago. I don’t want to single people out - because everyone was so valued - but there were a couple of very special ones that really resonated with me.

Reading HU it is incredible to be able to loose that feeling of being alone - especially in our darkest moments. Support is just one thing - but I learn so much from everybody.

I waited to reply to HU until I had received my letter from my consultant. It duly arrived and I wondered if l had been in the same room! Whilst there, I left the consulting room with revision of medications & a timeline of new medications and a framework for the future.

Dates, times & changing medications were discussed.

I now have to wait in order to see if any of them come to fruition - but as none were detailed in the letter - I am left holding my breath whilst trying to remain optimistic.

Once again, many thanks.

[DorsetLady PMRGCAuk volunteer]

Why we are here… and best of luck on the way ahead.

[piglette]

When I visited a consultant recently due to my fainting, he wrote a letter to my GP stating things about illnesses my parents had which were completely wrong. Also there were things about me that were wrong too. All I could assume was that he was muddling me up with someone else. Most worrying.

[spoof99]

this group group is indeeed a godsend....so much real life tested info from people who deal with these monsters every day....👍

[Grammy80]

So glad you are here!! I would have been lost in the woods if it wasn't for this incredible support, knowledge and learning to advocate for myself. All of us are with you heading for the same hopes and goals....and we do make it!!!! 💞

[Obscureclouds]

Yes it’s really great to have the support of HU. I felt completely abandoned for nearly 5 months after my initial diagnosis consultation. Like Piglet I had received a copy of the follow up letter to my GP which included wrong assumptions and things about a previous autoimmune illness and my current symptoms etc which were completely inaccurate. I wrote to tactfully correct & clarify points, to follow up on actions I was told would be arranged and to raise a couple of queries but got no response . Fortunately I was able to get a lot more clarity and understanding about my illness and medication from being part of this forum. The letter after my second consultation 5 months later contained some of the same inaccuracies and as he didn’t even ask how I was feeling I’m still bemused that he said I was suffering fatigue and lethargy . I do hope the things you are expecting come to fruition and if you have any queries that your consultant doesn’t prove to be as elusive as mine.

[PMRpro Ambassador]

Many of us have had similar experiences - not sure which is worse, a doctor who hasn't a clue about PMR/GCA or one who doesn't listen to you. Then you get the ones who exhibit both characteristics!!!! But we listen AND know about PMR/GCA ...

[Groggrim in reply to PMRpro]

And you are most valued and appreciated x