Elaine

[LLWB]

I just wanted to ask if Craig is feeling any better? I know it's been such an emotional roller-coaster ride. I'm praying for him that it's not PPMS, but I also know he needs a diagnosis, whatever that comes out to be. My heart goes out to you both. Is he getting more testing done in April, or sooner? Can you fly out with him next time? I know it's hard with a family involved, and that they are your and Craig's greatest concern. I hope you are okay too, was just thinking about you. Hugs and prayers, Maggie

[LLWB]

Don't yea just want to smack them. Nobody wants to take responsibility any more! If he's in pain, do something about it! Not just keep passing the buck back and forth. I'm surprised either one of you are still sane. I hope the kids can be of some help around the place. Are they big enough? So hard for kids to understand chronic illness.

I am marking the days on my calendar until I see Dr. M in Portland inOh well, more fun & games.
April. Im assuming there will be more testing to do, but at least I'll feel like I'm being taken seriously.I am on Cymbalta for the nerve pain, not sure it's doing much for me either. Right now my ENT has me on a Prednison push for chronic sinusitis. Not like-ing the side effects. I was hallucinating last night, and rapid heart rate. I felt stoned to boot! But during the day I do seem to have less pain. As long as I can get home from work before the weird (inject Twilight Zone music here) stuff starts, I'll be all right.Today was the last day of 6 pills a day, start tapering off tomorrow. Hope it cures the sinusitis. But I also have a severe deviated septum to deal with now, that I didn't even know about.Oh well, I'll cope.

I and others are praying hard for you and Craig. Hopefully his new PCP can get him on some meds for his depression. I know it's a hard hole to crawl out of. But if he is determined, he can do it. Best to you both...Maggie

[monotreme]

Hi Heather!!  thanks so much for your concern and support.  Yes, Craig is depressed.  He has been given Cymbalta for his nerve pain in his back several months ago but it did not work.  

I am hoping the physiatrist will help with a rehab PT program.  I think if he gets some relief from his symptoms and starts to feel better, things will turn around for him a bit.

His previous primary care physicians would not address  his pain or depression.  They really thought it was a neurologist's responsibility to do that.  They would say if the neuros could not give him a firm diagnosis, then they do not have to address the symptoms and treat them.   He is going to a new PCP in a few weeks.  

We really appreciate your prayers and kindness,.
Elaine

[Heather3418]

I just cried like a baby when I read your post.  I don't know why I seem to take Craig's AND your discomfort so personally.  I guess you could say that I am tender-hearted and wear my heart on my sleeve.  

I am so saddened by all that you and Craig go through.  It's really time you both had a streak of good luck for a change.  I still feel sure that Dr. M is the one that is going to be able to help Craig.

Elaine, it sounds like Craig is very depressed.  Don't you think?  Does his personal doctor know about this?  I don't want to see him go any further down.  

The only thing I can keep offering both of you, is my prayers and hopes for a better existence for you both.  I care for both of you so much....God bless you.

Heather  

[monotreme]

Hi Maggie,
  Craig is having a OCT test done in Dr. M's office on the next appt, which I believe is the first Friday in April.  It is that new test that more accurately measures brain atrophy by looking at measurements of (I think) the optic nerve.  I have to read more about it.  Craig's MRI of the brain showed "parenchymal brain volume loss" which I believe is whole brain atrophy.

   Thank you for thinking of us.  Craig is feeling a bit better.  However, nights are the hardest and he told me today that he keeps having flash backs to different times in his life and thinks he should have done this or that.    He has looked very sad all weekend.  He used to be so positive but not anymore.

  As Quix will tell you, Craig is a bit of a "type A" person who liked to go to school and was great at multi-tasking at his job.  Now he fights fatigue to stay at work.  he does use Provigil but he hates taking pills so he fights the urge to use medication.  He was in a huge state of denial for the past two years and as the denial starts to go away, the realization of his permanent disability is just horrible.  

  I will be able to go with him in April. My mother will come and stay with our children.  

  To give you an example of Craig and his difficulty of accepting his limits. here are two things he did:
  Got caught in a thundershower last summer.  All the handicapped parking spots were taken so his car was far from the building he was in.  So instead of waiting out the storm for a few minutes, he thinks he will run to his car.  He goes out in the pouring rain and sees that his feet do not want to lift rapidly off the ground in a rhythmic pattern to run.  So he gets soaked and calls me in a panic that he cannot run.  I reminded him that he has not been able to run in a long time.  Oh yeah..he forgot!!!!!

  Another example is last summer when he could not accept that his legs do not move in our pool water.  He insisted to go in our 8 foot end with a ring nearby  and see if his legs would move if he  were in danger of drowning.  Of course,  his legs could not keep him afloat.  So he resigned himself to the shallow end.  But it took alot for him to realize that indeed his legs were incapable of moving in water.

  So extreme sadness from coming out of denial is hard.  He does have six children to support and has always been very independent.  He always hoped he would get better.  But the daily muscle spasms and his chronically tight leg muscles are making it very difficult and serve as constant reminders of his illness.

  I am really hoping Dr. M can help you.  I guess we will both be counting the days to April!!!!

  Elaine