Jill
Senior Member
- Messages
- 209
- Location
- Auckland, NZ
Moderator: Please note the next 7 posts have been split from the 'Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July' thread
Hi again,
I have a breakthrough with Al to report. It's either he has been misdiagnosed for years, or maybe of interst/use to others esp Prof Edwards.
After getting the terrible asthma like reaction to the NSAIDS, Al's gp decided to start him on the DMARD he could prescribe. (The hospital rheumatology had refused to see him, basically saying that they couldn't help - although I don't know why I suspect its this ME/CFS label).
Anyway, I'm pleased to report Al is doing extremely well on Sulphalazine (Sp?). It has really helped his pain. He can now actually walk like an upright human, and the pain in his joints, bones and continual headache have also receded. He had been waking up terribly badly with what he described as a "surge" (Neurology refused to see him last year) and pain behind the eyes. After one week on the drug he is now waking more normally (although its there a bit). So!!
He had no RF, no high ANA, no high CRP. All I can deduce (after looking at the net) is that maybe he has had ankolysing spondylitis (sp?) all this time OR maybe its some other auto immune disorder. His GP nearly fell over when he saw him the other day, and is going to be getting onto the hospital to tell them Al is no faker and he wants to know the diagnosis.
Al has been stuck in a lazyboy for 2 years , had been declining for the last 10 and even our so called ME expert hadn't bothered trying this or doing a complete differential diagnosis it would seem.
Al is weak ofcourse, and is just taking things slowly as its like his body is adjusting to a new norm, not to say his mind. He used to go to bed at 5 - 5.30, because he was is in so much agony and fatigue. Tonight he was up til a normal 10.30pm. That's it too - the fatigue has lifted! He said it is the weirdest thing. BOTH the pain and fatigue lift with each tablet.
We had seen 2 rhemmies, and pain clinic where we saw some psychologist AND no-one had ever gone through what had and hadn't been tried. So, I started a list. This is all after discussing a trip to Switzerland for assisted suicide in a few months time. I was determined to pester people until we had at least tried the cheaper DMARDs and then onto Rituxan if possible.
This is a salutory (sp?) lesson for everyone.
I will wait a month before I write a formal piece to friends on the net, just in case this all turns to custard and he needs to be on another med, but for now it is good news. (This is 20 years too late really). When we eventually have further tests done (xrays etc) I will be able to let you know if the diagnosis changes.
This is a terrible story of being put in a "box" and nobody questioning the label. I would have thought that every dr he saw should have been playing devils advocate - but doesn't look like it. Will keep you posted. Of course his diagnosis may not change?
Merry Christmas everyone
Hi again,
I have a breakthrough with Al to report. It's either he has been misdiagnosed for years, or maybe of interst/use to others esp Prof Edwards.
After getting the terrible asthma like reaction to the NSAIDS, Al's gp decided to start him on the DMARD he could prescribe. (The hospital rheumatology had refused to see him, basically saying that they couldn't help - although I don't know why I suspect its this ME/CFS label).
Anyway, I'm pleased to report Al is doing extremely well on Sulphalazine (Sp?). It has really helped his pain. He can now actually walk like an upright human, and the pain in his joints, bones and continual headache have also receded. He had been waking up terribly badly with what he described as a "surge" (Neurology refused to see him last year) and pain behind the eyes. After one week on the drug he is now waking more normally (although its there a bit). So!!
He had no RF, no high ANA, no high CRP. All I can deduce (after looking at the net) is that maybe he has had ankolysing spondylitis (sp?) all this time OR maybe its some other auto immune disorder. His GP nearly fell over when he saw him the other day, and is going to be getting onto the hospital to tell them Al is no faker and he wants to know the diagnosis.
Al has been stuck in a lazyboy for 2 years , had been declining for the last 10 and even our so called ME expert hadn't bothered trying this or doing a complete differential diagnosis it would seem.
Al is weak ofcourse, and is just taking things slowly as its like his body is adjusting to a new norm, not to say his mind. He used to go to bed at 5 - 5.30, because he was is in so much agony and fatigue. Tonight he was up til a normal 10.30pm. That's it too - the fatigue has lifted! He said it is the weirdest thing. BOTH the pain and fatigue lift with each tablet.
We had seen 2 rhemmies, and pain clinic where we saw some psychologist AND no-one had ever gone through what had and hadn't been tried. So, I started a list. This is all after discussing a trip to Switzerland for assisted suicide in a few months time. I was determined to pester people until we had at least tried the cheaper DMARDs and then onto Rituxan if possible.
This is a salutory (sp?) lesson for everyone.
I will wait a month before I write a formal piece to friends on the net, just in case this all turns to custard and he needs to be on another med, but for now it is good news. (This is 20 years too late really). When we eventually have further tests done (xrays etc) I will be able to let you know if the diagnosis changes.
This is a terrible story of being put in a "box" and nobody questioning the label. I would have thought that every dr he saw should have been playing devils advocate - but doesn't look like it. Will keep you posted. Of course his diagnosis may not change?
Merry Christmas everyone
Last edited by a moderator: