Scared for my son. Please help w/comments *Update 4/16*

[Emeraldgreen]

I was just reading about Myositis and found an interesting quote about it:

"Most experts in the natural medicine field believe that many of these autoantibodies are produced by the body in response to an infection or allergen. When the offending infection(s) or allergen(s) are removed, the production of these destructive autoantibodies stops."

I know in one of your earlier posts you mentioned that the Dr. thought perhaps your son had picked up a virus. But if it 'could' be a response to an allergen or infection, it sounds like things could improve if the trigger was found. (if there is one to begin with).

I'm sure he's not up for 101 questions but maybe when he's feeling a little better in a day or two, he could try and determine if he's been exposed to any new things, foods, enviroments etc..

I hope that he will get better very soon. I know this must be so hard for you, especially since you are far away. I hope you get good news about it all in a day or two.

[Daisy and Delilah]

Oh my goodness! I'm just reading this. How scary for everyone. I can imagine how frustrating this is to feel like this all of a sudden and not making any progress after diagnosis. I would be beside myself with worry too. It's hard enough to have problems ourselves but when our children have problems, it's 100 times worse. I will keep all of you in my thoughts and prayers.

[ramanth]

I'm glad to hear it's treatable and nothing too serious. Prayers for a swift recovery!!

[catfamily]

I'm sorry i just saw this thread now...i feel so terrible.I hope he is feeling better now.I didn't know prednisone also worked for this kind of problem.I thought it was mostly for broncitis issues.
I'm glad he'll be ok though...he's in my prayers.
What a terrible terrible scare for him.And you and everyone who loves him so very much.

[Daisy and Delilah]

How is he doing today? I hope the prednisone has kicked in by now.

[Medusa]

How is he doing today?

I won't know until later today. There's a 3 hour time difference between us, so hopefully he's getting some much needed rest. I'll post as soon as I hear something. Thank you so much for asking. Please continue to hold him in your prayers.

[gini]

Gosh, I sure hope that he is feeling better today.

[Medusa]

I just spoke to him and he seems to be in better spirits at least. I asked "How's my boy?" and he said "Trying to hold it together" but his voice was shaky and I could tell that he was holding back tears. He said he's never felt so helpless and vulnerable.

While we were talking, his dr. called and my son asked if he has Inclusion Body Myositis and the dr. said "No, yours came on too fast. It's viral". This was a relief to both of us. He did tell my son to increase the amount of Prednisone that he's taking, though, and not to decrease it daily as previously instructed since he hasn't seen much progress. He said to keep taking 60 mg. a day until he sees a noticeable improvement. He also told him that if he didn't feel better by tomorrow to go back to the ER or the walk -in clinic, that he would probably be seen more quickly at the walk in clinic. And the dr. will refill his Prednisone as necessary.

His voice was, as I mentioned, shaky, in part, I think, due to his emotional state. But over all, he sounded stronger, although he says he still can't cough like he needs to; he doesn't have enough strength. His abdomen isn't as tight as it was and he still says that he has no pain or soreness, just weakness and partial paralysis. The dr. assured him that this would improve w/time and my son is trying hard to believe that. He wants so badly to get back to work and exercise again. His appetite at least is ok and he doesn't have problems w/breathing and the dr. made a point of asking him that.

His girlfriend came over and spent her day off w/him, brought him dinner, gave him a little massage and just did her Florence Nightingale routine and he really appreciated it. He said that she's the only one who can calm him down. His friends keep calling and checking on him, even his manager offered to help and, since his girlfriend has to work today, one of his other female friends who just moved to LA is going to watch the Superbowl w/him. They probably both need the company.

So. If he doesn't feel better tomorrow, he is going to go to the walk- in clinic. I'll update you as I hear more. Again, friends, thank you so much for your inquiries, concern and, most of all, your prayers. I know that they're working for him, albeit not as quickly as we both would like to see but even a little improvement is better than none at all.

[Catty1]

Waiting is the hard part! I think you said he had had a cold or some viral thing before this, so that might have brought it on?

Sounds like he takes good care of himself - maybe a good antioxidant or immune system booster (vitamin, not drug!) might be a good idea afterwards?

Poor kid - so upset at being so vulnerable...I think he'll be SO happy when he is well and has his first workout!

Here is a link to Irwin Barker, a Canadian stand-up comedian; I just love his work!

I heard him on an interview last week, and in June he was diagnosed with terminal cancer. It's at bay right now with chemo...but maybe your son can relate somewhat as helplessness is a big thing here. Irwin has incorporated his illness into his act! though he doesn't use it all the time.

http://www.irwinbarker.com/

To hear the interview(it's on this other site for a month), click on the link and scroll down a tad to January 30. Click on Irwin's name and enjoy.

http://www.cbc.ca/soundslikecanada/interviews.html

I just hope your son gets some comfort and laughs here!

[Medusa]

Thank you so much, Candace. I'm sure he'll appreciate this. Another good comedian friend of his, Robert Schimmel, also has cancer and, although I'm not sure if he incorporates it into his act or not, my son says he's one of the nicest and most mannerly gentlemen you'd ever have the pleasure of meeting. He accepts his illness w/grace. I don't know when my son will be able to use the computer again but when I get his reaction about the clip, I'll be sure to post it. Thank you again, my friend.

[Medusa]

I think you said he had had a cold or some viral thing before this, so that might have brought it on?

Sounds like he takes good care of himself - maybe a good antioxidant or immune system booster (vitamin, not drug!) might be a good idea afterwards?

Yes, he's had sinus problems for the last couple of months now. Every time there's a weather or climate change, he has problems and he was back and forth from LA to OH several times in Dec. He's big on vitamins and herbs and is always mindful of good eating habits, rest, exercise, etc.

[Grace]

If he's going to be on increased doses of Prednisone for any length of time, make sure he has his blood sugar checked. Steroids can bring on transient diabetes.

[Medusa]

If he's going to be on increased doses of Prednisone for any length of time, make sure he has his blood sugar checked. Steroids can bring on transient diabetes.

Wow, good to know. Thanx for that. I think it will probably only be for a few weeks but the dr. has been checking his blood and I'm sure he'll continue. I'll mention it to my son just to be safe, not the diabetes part because he tends to be his own worst enemy w/worry but I'll tell him to be sure that the dr. check his blood sugar.

[Rachel]

. He's big on vitamins and herbs and is always mindful of good eating habits, rest, exercise, etc.

You might want to suggest that he let the doctors know of all the vitamins and herbs he has been taking. It has recently been something that our clinic regularly asks us along with asking us about all our medications. Not that it is likley that these may be in any way involved as he is young and probably not taking any medication, but just to cover all bases.

[Medusa]

Thank you for that again. I'll be sure to tell him.