Late diagnosis

[Goodwin]

After visiting numerous medicos not one had any idea of what my problem was. PMR/GCA turned out to be the culprit and some bright spark finally had a guess which turned out to be correct. I now have vertigo, wobbly vision, hearing loss, horrible fatigue and exhaustion. We have to realise that there is a huge learning gap and ignorance out there. Late intervention with Prednisone has taken a huge toll on my life. I am making every endeavour to try and get my life back at 80yrs. However, I can no longer drive which has had an enormous impact on my independence. Don’t rely on anyone regardless of their qualifications. There is a tremendous lack of knowledge out there. Don’t treat anyone as a God. Do your own research.

[PMRpro Ambassador]

Sorry - not quite clear what you mean by late diagnosis?

[jinasc]

Do you have both?

[PeachyLife]

I hope appropriate treatment with pred will restore your well-being. Don't despair - I know the loss of wheels is a huge game-changer, and hope you are able to overcome it. I agree with the conclusions that we really need to do the research and take charge of our relationships with the medical providers. Best of luck to you.

[LIVEORDIEHEREIAM]

AMEN to that, Goodwin! Do your own research!

I learned enough on this forum that I went back to my primary provider and pushed hard for the blood work he had mentioned but skipped on without explanation.

All indicators were high enough to make the diagnosis, but he still wouldn't prescribe pred!

A few days later, the GCA was debilitating so I went to the ER. I believe my Dr. saw that I was at the ER via internet and immediately wrote the Rx. I believe he was just covering his own _ss!

As a result of the delay, my vision is about half of what it was when I first saw him about the incredible night time headaches but at least I have that much to work with. No longer my Dr.!

Do your own research!