My daughter, Ella Catherine, was diagnosed in late October, a month after her 2nd birthday. I was just passing through the board and saw your profile. You are a great friend to want to help your friend.

A few things I do know in response to your questions: I have heard that a muscle biopsy is not very accurate at all in diagnosing DM and because of that, is usually done when there is an absence of other symptoms. Also, onset of symptoms is generally very quick. Don't know if any of this helps. Hope your friend improves soon.

How can we help you?

I think getting a correct diagnosis and treatment should help.Getting the cpk into a more normal range should help and hopefully improve the swallowing ability.If it is a flare of a myositis it should responded to treatment or calm down after a while.

I have a lot of problems swallowing but have learned to eat slowly and careful.We have to be careful not aspirate food or liquids into the lungs or it can cause pneumonia.Choking is scary and by panicking we really tighten up the throat muscles.Some folks drink Ensure to help with nutrition.

I hope your friend improves.What a scary time for you both.Just keep working with the doctors and hopefully things will take a turn for the better.A feeding tube is no fun and I hope he can go back to eating soon.

You are more apt to find more answers to your question if you post it to the DM Board because there are many, many people who read the other boards more regularly.

Not knowing the problems of why the physician made the choice to insert a feeding tube, I hesitate to respond positively.

I don't want to alarm you, but, no, inserting a feeding tube is not necessarily a good thing (except to supply nurnishment if a person isn't capable to eating and swallowing.)

More details of the problems leading up to the feeding tube insertion decision would be more helpful.

Sorry I can not be more specific.

have a good bit of experience in all sorts of feeding other than the natural way, albeit not in connection with myositis. With the feeding tube with me there was no problem in coming of other than a soar throat, problems with saliva decretion and a slightly odd voice for a fair time (and a pretty wet pronounciation). Only problem I got with swollowing is with drinking (sort of my favorite pasttime if the stuff is right and in the right quantity). Would need a dribbler at times.

All the best to you and your friend

back again after reading your profile. Have had similar experience as your friend and am trying eastern medicine at the moment with, in parts, very surprising results. Whereas it is much too early to say anything about the outcome, I seem to respond not too bad sofar. But keep in mind, just about every case of a myositis seems to be different... in response to treatments just as well.

Big hug

Martin