Rhonda & Ryan,
That is such wonderful news, almost like a miracle isn’t it? My neuro told me if the cytoxan works, the CIDP won’t come back, so Ryan should go ahead with his life with that thought; just keep moving forward. Going back to college would be so wonderful for him, he has just been through so much. I would expect continued progress, nerves can heal for up to 2 years after the CIDP is arrested…
Thanks so much for posting such great news here on the forum. I assume you you will continue to keep us updated? I remember when I first walked at PT (after 2 1/2 years of NOT walking), how wonderful it felt, PT belt & all. I started with a walker for a few weeks, then tried the Canadian forearms crutches, & then two canes, then one cane; all in a matter of 2 months. I still use one cane when I go out alone, but just AFOs in the house. I expect Ryan to recover much better because I was 50 by then, his age in in his favor.
I called my insurance to double check about Dr. Lewis and he is in my network. I guess I had been looking under the wrong list of doctors for my network. I am going to make an appointment for the Novi office. Has anyone had to go to Harper Hospital and if you did where is the parking. Does he do testing in his office? I am so relieved to finally find someone that sounds really good. When I went to the website for the hospital that shows his name, it gives the story about the exec who went to so many doctors and could not find what was wrong with him and he finally went to Dr. Lewis and he found the problem just from his old blood work tests. Thanks for the referrals to him, will let you know how things work out.
Clare in Michigan:p
It is great news that Andy is home from the hospital and that he is seeing life looking up with walking. We are all waiting for news of the new little one–his daughter–we are a great cyber-family!
Acne can come after stress and everyone know he has had a good deal of that–as well as autonomic changes as someone else mentioned.
I also wanted to say how much I admire you as sister and your fierce protection of him. I am glad that he is well enough that you could catch up emotionally with all that happened. It is never weakness to cry for those you love–it is rather a sign of the great love that you are able to share in your family and how strong you all are because of that love.
WithHope for a cure of these diseases
i am so glad to hear your mom is improving and that you got to spend some quality time wither her. You know what is the best though … hearing you sound so positive about all the little things she is achieving. I can understand how easy it would be for family and friends to get bogged down with all the negatives but you really do seem to get strength from the positives however small, and that is really the only way you can face this illness.
As for the crazy talk, i agree with the idea of icu psychosis. I had the most bizarre hallucinations that were so real to me (and to make things worse they had bits of reality woven into them like the names of nurses, doctors etc) which just made them even more real to me. I’m glad that i was on a vent at the time and couldnt talk as i’m sure i would have been sent to the psych ward if i actually said what i was thinking. I h ave read it is due to a combination of factors – the meds you may be on plus the stress of being in icu, lack of sleep, constant monitors going off etc. I dont know if it would continue in a rehab hospital … but rest assured many of us have been through some strange things as a result of GBS and you can just put it down to another thing we dont know how long it will take to improve!
This is happy news to hear. It sounds like you finally have a diagnosis and even though he has GBS, it’s a big sigh of relief. The posts read like not one of us has told you not to let your bubble float too high. You know you are still welcome to stay here with us. You would be such a big help to new moms that come here.
Hey Norb I’m so glad you are better! Dawn Kevies mom! 😮
CONGRATS! I am so happy to hear that not only are you approved, but you will be getting your back-pay checks. It is hard enough being ill, let alone worrying about money. My husband just retired yesterday, so I will finally be going on Medicare on Feb. 1st. I won’t miss the $1000 yearly decuctible we had, but now the govt. will be taking $93.50 each month out of my measily SSD checks. All in all I think it will be a wash, as I still need to keep his insurance as a supplement… Best of luck & have a great Christmas!
Thanks for your kind thoughts over this last week. Someone must have been praying really hard. My son over the weekend rolled from his back to his stomach. He then discovered that he could raise his knee up a little too. But thats now all. Today while he was getting PT he laid on his side and lifted his head up! He also was able to for the first time in weeks lay on the floor and play with his Thomas trains. Who knows, pretty soon we might see him crawling around!