Rare Disease

**Monner 1** · 06-25-2009, 07:58 PM

Have any of you heard about the disease called Body Inclusion Myositis? My husband has been newly diagnosed with this rare muscle disease. There is no treatment and we are praying that it has run its course. It has affected his thigh muscles and upper arm muscles and his grip strength in his hands. If anyone has any knowledge of it and anything that might help. Thanks to all of you.

Monner

**craftypam** · 06-25-2009, 08:46 PM

I have never heard of it; but did you try googling it and maybe finding other people that have it so you can talk to them?

**Debbie-cat** · 06-25-2009, 09:30 PM

I am so sorry! I have not heard of it at all. I hope though that he gets better soon. He will be in my thoughts and prayers.

**strezzed** · 06-25-2009, 10:46 PM

Never heard of it but wanted to send you both good thoughts and prayers!

**frugalfranny** · 06-26-2009, 03:04 AM

Sorry for you and your hubby.

A couple sites that I have used in the past and have good reps. are:
www.mayoclinic.com and www.webmd.com Might see if they have anything about it......if not google it and good luck.

**frugalfranny** · 06-26-2009, 03:09 AM

Here is something I found when I googled.........might give info...

http://my.clevelandclinic.org/disord..._myositis.aspx

**Monner 1** · 06-26-2009, 06:57 AM

Thank you Frugal Fanny I checked out the Cleveland Clinic site and they have an association that I can get in contact with. I sure do appreciate all of the well wishes that I have received just keep us in your prayers.

Monner

**Saydee** · 06-26-2009, 08:35 AM

Sending prayers......

**klean163** · 06-28-2009, 02:01 AM

I have never heard of it ,I'm so sorry my prayers are with you both ,

klean163

**mauimagic** · 06-28-2009, 02:13 AM

Prayers and aloha from Hawaii as you travel this unknown road. We're here for you.

**mamamia** · 06-28-2009, 02:57 AM

Hoping the best for your husband and the effects it's surely having on your family. Please take care of yourself too. Your husband needs you now more than ever.

HUGS!
Theresa

**MommyBliss** · 06-28-2009, 09:59 PM

I have never heard of it, but praying for you both.

**mom2three** · 07-21-2009, 11:20 PM

This may sound odd to you, but was hubby tested for celiac disease? Even if he was and it was negative, he may still be gluten intolerant and a GF diet may help with symptoms. There would be very little to lose (unless hubby is a big crab addict) by changing to a GF diet and potentially a lot to gain.

I looked up the disease and gluten at Pubmed and saw a possible relationship. I have reason to believe (from personal experience and research) that these type of disorders could be reduced with a GF diet - just a thought from a Ph.D. biochemist with gluten intolerance.