View Full Version : The Rheumy has phoned

01-15-2009, 04:04 AM
CT showed nothing major which is good news cancer wise.He isnt getting enough air in his lungs.She is leaving his meds alone even though he told her all original symptons are back (its doing my head in)
She has reffered him to a consultant at Walton hospital that specialises in muscles????
The only med John is on for the wg is steds and stuff for his bones,dont know what the meds are that you discuss on here.Should John be on anything else
Sue x

01-15-2009, 06:57 AM
From what you're saying I would think he definitely needs his meds reviewed. What's wrong with this Rheumy? Has she been sued before and not willing to make any decisions? Is there somewhere you can get a second opinion? I have no idea why a specialist in muscles would help.

01-15-2009, 07:29 AM
All I know is the top man in the uk on wg is at Birmingham hospital.I have made an appt at the doctors in the morning to see if he can do anything, trouble is will he go over the consultants head
I do know he cant live like he has had to the last mth or so
Sue x

01-15-2009, 07:54 AM
Whether or not someone goes over someone's head is just emotions. Just tell them that the only issue is John's health and if that's not the only issue for them then it should be.

Don't be worried about it. You're doing the right thing :) Full speed ahead, damn the torpedos

01-15-2009, 08:01 AM
Thanks Andrew will keep you posted
Hugs Sue x

01-15-2009, 02:30 PM
hi all.i'm confused my rheumy has reffered me to dr lecky at walton hospital.feel free to google him and tell what you think.

01-16-2009, 03:31 AM
Hi Sue,
Well, he's a neuroimmunologist, so he's familiar with autoimmune diseases and how they might affect the nervous system. He can at least rule out a few diseases and provide some info about the state of John's neurological and muscular health. So that would be good. I'm assuming John's rheumy isn't transferring John's care to Dr Lecky, just wants a consultation, right?

I wanted to offer you some help in navigating the medical mess with John. From your messages I think you might be overwhelmed, having been dunked into this sea of tests, diagnoses and procedures overnight. I'd be surprised if you're not. I'm a physician who knows what they're talking about, and I can barely keep up with my own. My list of advice is a bit long and might help others, so I'm going to start a new thread. Keep an eye out for it. I think it will help you.

01-16-2009, 04:30 AM
hi sangye.yes it is only a referal and not a transfer.she wanted to do this last year but then i got the cancer and everything wg wise just stopped.i hope i don't have to redo all the tests i've had over the last two years,i've had so many i've lost count.some of them were very painful and i don't know if i could do them again.i get the feeling my rheumy has run out of ideas because things have got worse over the last couple of months and it's as if she doesn't know what to do next.on a more positive note i went to see my gp today.he listened to what we had to say about the wg symptoms and he immediately upped my pred from 10 to 20 for ten days to see if that helped.he listened to my lungs and prescribed an antibiotic for an infection,this is a week after my rheumy said they were ok.at last a gp who isn't afraid to intervene when a consultant is involved.

01-16-2009, 04:35 AM
That's great news John! (I mean, not great that you have an infection, but you know)

I think you've got to get a new rheumy. With Wegs (much less cancer to boot), they can't afford to quit on you or run out of ideas. Your GP can certainly put out some fires, but won't be equipped to properly take care of you.

I hope the antibiotics kick in fast and you start feeling better today.

01-16-2009, 05:22 AM
Thanks Sangye his gp also upped his frusimide to 40mg he is goin to review him in ten days and said if he is no better he will up the steroids to 30mg.Then will reduce them slowly after (fingers crossed)Will keep an eye out for your post and Thank You All for just being there
Sue x

01-21-2009, 09:05 PM
Good news! How's it going with the increase?

01-22-2009, 12:48 AM
hi andrew.things are a little better.i don't feel like crap as much as before and the cough is a lot better but still there.the extreme fatigue hasn't improved much but apart from that i'm great:D

01-22-2009, 06:45 AM
Hey, it's progress! Perhaps the fatigue will get better (at least a little bit) as a result of you feeling less like poo. Hope it does.

01-25-2009, 10:07 PM
Hi Sue, to be fair to doc's, because of John's cancer, they concentrated on treating that disease aggresively since time is so important. Wegs, although so unpleasant, can be left unchecked for a while and than thy can "zap" it with pred and chemo and our bodies seem to go back to our "norml" state. Do go over anybody's head if it means better care for John, get second and third and fourth opinion if you are not satisfied. As long as he is being treated for the Wegs in the process. Good luck with the new doc