My sense from your posts is that right now, you have been seeing lots of specialists. My concern about all this is that the specialists probably don't talk to each other very diligently and with something like this, you do need coordination by a family practitioner.. Hope you have an appt soon with the GP who can hopefully help put this all together. Bruce has an appt with his GP monthly now.

Hi Catherine, unfortunately my GP is getting older and has had some major health issues himself. He also had a severely disabled daughter who he and his wife (also a GP) looked after themselves with help from a daytime carer. Liz passed away very unexpectedly and my GP was the one to find her dead when he went to wake her up in the morning. He hasn't really been the same since then. It's as if part of him is missing now.

Alex has reduced his hours and days that he works, he also has started taking a lot of leave. He has also started refusing to take new patients so I'm thinking he is winding down towards retirement. I will miss him very much when he retires but I can't feel anything but hope for him and his wife to have a really good retirement. They deserve it.

In the meantime it's not always easy to get an appointment with him, and sometimes he seems a bit distracted. I dread finding another GP.

You are definitely right, my main docs are the neuro and haem. The neuro hardly communicates with me let alone my GP or haem. He hasn't sent my GP a letter about my hospital stay yet and I'd be surprised if he did, even though they did their internship together.

My haem, on the other hand, sends update letters to my GP regularly. The Prof sends nothing to anyone. The rehab doc has no more input unless I need to be admitted again.

Illness is never convenient is it? It's not like when you're a child and you get chicken pox and you get pampered and coddled with the bonus of missing school for a while. :o

Regards

Frustrated
 

Hi, I've been taking a half doseFlorinef and feel a lot better. Even the swelling in my feet is a lot less.

My Dad brought his BP monitor today (still waiting for mine) when he came to see me and I expected at least 90 on something. It wouldn't take a reading. It kept saying E LOW, meaning too low to measure....my Dad took his just to compare (he's on BP meds) his read 92/54 so mine must be lower than that :(

We took mine standing, sitting and lying...no luck and the rhythm was off. I kept getting lots of missed beats sometimes with 2 missed beats in a row. I couldn't feel these missed beats and once again, they only happened to me, not my Dad.

It looks like I'll have to go back on the full dose...I'm really disappointed.

I'm looking forward to my next blood test...weird hey? Only people on this forum probably say that ;)

Regards

Chirley

You need to make sure you are using the right cuff size assuming you are using an arm cuff BP monitor. You may need a smaller cuff than your dad.

And the batteries should be fresh. When you get yours, be sure to take it to your next dr's appt and check to make sure you get the same reading they do.

Hi, I weaned off this med a long time ago but I hope I never have to back on it again.

I have had prednisone, prednisilone, hydrocortisone, dexamethasone and the fludrocortisone and while I don't like any of them...the two worst were the fludrocortisone and dexamethasone.

I'm not having any treatment at the moment and while I can feel my health deteriorating very slowly, I still feel better than when I'm on steroids.

Hope the Fcort keeps working for you.

Regards

Chirlet