Hubby's going to see neuro today. His mom is insisting she's going and he's insisting that she's not. No tension here!
He's tried and failed taking prednisone and doc had him on Neurontin as a transition med between getting off the pred and today's appt. He didn't tolerate that either.
What are the odds that the doc will have him still try the Avgar (sp?) - the medicine that promotes your own body's steroid production. Or will he more likely say it's time for IVIG? My hubby is really anxious about today's visit. I'm trying my hardest not to cry in front of him, the kids and his mom right now.
He's also taking FMLA papers for the doc to fill out so he has them in hand for when school starts back.
WOW - still docs going the steroid first route! I have been looking at recent research and I think it is quite clear that if you have diagnosed CIDP then IVIg is the first line treatment.
However - there is some new information from the UK that indicates that some (note SOME) people on IVIg benefit from a short period on steroids after time on IVIg.
As for mother and son.... how do you win there! Probably a worse problem than the medical problem. I do think you should go (excuse for her - she can sit the kids?) but if he is not happy with that then perhaps he should go alone even though it would be best for him to have your support there (NOT mum).
Good luck!!
His appointment was last week. He hasn't lost any nerve function (reflexes) so doc says pain management is where they need to focus until nerve fcn is affected. He's got a script for Cymbalta and starting it tomorrow. Left paperwork for doctor to fill out for intermittent FMLA. They called yesterday to say it was ready & would cost $30 - seriously. That would've been nice to be told upfront about the fee.
What sources do you follow for research info? I haven't found a good one, but don't know where to look.
His mom went with him to the appt. I couldn't go due to a misunderstanding between doc, staff and me. It would have been tense. That's an other story, though.
When first diagnosed hubby considered traveling to Vanderbilt University for care. It looks like that's where current research is being done. It would be quite a hardship on us for him to take that trip & he's trying to give this doc a chance. That said, I think he's dealing with depression and/or denial with reality (avoiding as much as he can) and has become complacent about treatment taking the easy route. I don't know enough about it though, so that may not be a fair assessment.
Research! Good luck! Because information is often difficult to get at. Use Google Scholar to find sources but expect that you will often only get an abstract (if that) or just a few pages. Then you have to pay a fee or find a library with the journal or book. There is a lot more on treatments than causes.
As for hubby... Only answer is to jolt him out of denial (etc). No matter what - he just hast to get on with life and run the opportunities as they come. Take him dress shopping every time he looks like getting depressed. You don't have to buy but lots of looking might just convince him that something like gardening is a good option??? LOL.
4leafclover said:
His appointment was last week. He hasn't lost any nerve function (reflexes) so doc says pain management is where they need to focus until nerve fcn is affected. He's got a script for Cymbalta and starting it tomorrow. Left paperwork for doctor to fill out for intermittent FMLA. They called yesterday to say it was ready & would cost $30 - seriously. That would've been nice to be told upfront about the fee.
What sources do you follow for research info? I haven't found a good one, but don't know where to look.
His mom went with him to the appt. I couldn't go due to a misunderstanding between doc, staff and me. It would have been tense. That's an other story, though.
When first diagnosed hubby considered traveling to Vanderbilt University for care. It looks like that's where current research is being done. It would be quite a hardship on us for him to take that trip & he's trying to give this doc a chance. That said, I think he's dealing with depression and/or denial with reality (avoiding as much as he can) and has become complacent about treatment taking the easy route. I don't know enough about it though, so that may not be a fair assessment.
Thanks, Michael. :)
Michael C Stark said:
Research! Good luck! Because information is often difficult to get at. Use Google Scholar to find sources but expect that you will often only get an abstract (if that) or just a few pages. Then you have to pay a fee or find a library with the journal or book. There is a lot more on treatments than causes.
As for hubby... Only answer is to jolt him out of denial (etc). No matter what - he just hast to get on with life and run the opportunities as they come. Take him dress shopping every time he looks like getting depressed. You don't have to buy but lots of looking might just convince him that something like gardening is a good option??? LOL.
4leafclover said:His appointment was last week. He hasn't lost any nerve function (reflexes) so doc says pain management is where they need to focus until nerve fcn is affected. He's got a script for Cymbalta and starting it tomorrow. Left paperwork for doctor to fill out for intermittent FMLA. They called yesterday to say it was ready & would cost $30 - seriously. That would've been nice to be told upfront about the fee.
What sources do you follow for research info? I haven't found a good one, but don't know where to look.
His mom went with him to the appt. I couldn't go due to a misunderstanding between doc, staff and me. It would have been tense. That's an other story, though.
When first diagnosed hubby considered traveling to Vanderbilt University for care. It looks like that's where current research is being done. It would be quite a hardship on us for him to take that trip & he's trying to give this doc a chance. That said, I think he's dealing with depression and/or denial with reality (avoiding as much as he can) and has become complacent about treatment taking the easy route. I don't know enough about it though, so that may not be a fair assessment.