inclusion Body Myositis

mosssideblue

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Have just been diagnosed with this condition and advised that there is no current successful treatment. Whilst not life threatening, Dr has told me that it will worsen to an extent that a wheelchair is the only realistic outcome.

Anyone out there also have this condition?
 

BlueMojito

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1 Sep 2014
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Wow, sorry to hear that op. Unfortunately I know nothing about it, but just wanted to send you my best wishes. Take care blue.
 

Bill

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winding down in life.
Have just been diagnosed with this condition and advised that there is no current successful treatment. Whilst not life threatening, Dr has told me that it will worsen to an extent that a wheelchair is the only realistic outcome.

Anyone out there also have this condition?
I have polymyositis. I'm now disabled and can walk 10/20mts. I use a mobility scooter to get around. I also have a portable one that I use for going to the games and recently took it on a trip to Spain. I will be at Brighton. I will be at Watford and I will be going to Where ever we get drawn in the champion league. Fuck it if thinks itsgoing to make one fucking iota difference to my life.

Only snag so far is the steroids haven't made a blind bit of difference.

Edit.

I'm still better than fucking bravo.:)
 

Gaylord du Bois

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Great Umbrage.
Have just been diagnosed with this condition and advised that there is no current successful treatment. Whilst not life threatening, Dr has told me that it will worsen to an extent that a wheelchair is the only realistic outcome.

Anyone out there also have this condition?
Sorry to hear that, mate. I hope you manage to buck the trend.
 

Gaylord du Bois

Well-Known Member
Joined
16 Aug 2010
Messages
25,810
Location
Great Umbrage.
I have polymyositis. I'm now disabled and can walk 10/20mts. I use a mobility scooter to get around. I also have a portable one that I use for going to the games and recently took it on a trip to Spain. I will be at Brighton. I will be at Watford and I will be going to Where ever we get drawn in the champion league. Fuck it if thinks itsgoing to make one fucking iota difference to my life.

Only snag so far is the steroids haven't made a blind bit of difference.

Edit.

I'm still better than fucking bravo.:)
My mate has had this since 1997. It's knocked him bandy at times but his strength of character has always driven him on. I'm sure he'd be more than happy to cut through some of the crap with you.
 

Bill

Moderator
Joined
22 May 2004
Messages
69,700
Location
winding down in life.
My mate has had this since 1997. It's knocked him bandy at times but his strength of character has always driven him on. I'm sure he'd be more than happy to cut through some of the crap with you.
Yep if I could pick his brains.nothing makes it better. Got more scans and shit next week. .
 

mosssideblue

Well-Known Member
Joined
6 Dec 2013
Messages
25,211
Location
Deep under the Ocean
I have polymyositis. I'm now disabled and can walk 10/20mts. I use a mobility scooter to get around. I also have a portable one that I use for going to the games and recently took it on a trip to Spain. I will be at Brighton. I will be at Watford and I will be going to Where ever we get drawn in the champion league. Fuck it if thinks itsgoing to make one fucking iota difference to my life.

Only snag so far is the steroids haven't made a blind bit of difference.

Edit.

I'm still better than fucking bravo.:)

Cheers Bill and sorry to hear you are not as good as you would like. Must admit it has come on rather quickly, only 5 years ago I was fit as a fiddle and was up and down ladders painting the outside of the house, now I cannot climb the stairs without dragging myself up by the arms, nor can I get out of a chair without using my arms. I was reading online yesterday that they have a new drug under trial which is giving promising results. My only gripe so far is it has taken over two years, EMG and several scans to diagnose. City have been brilliant with me allowing me to change my ST seat to accommodate me not being able to walk down the terrace steps as I will fall.

Have been looking at scooters (although hope I dont need one for a few years yet) and they have come on leaps and bounds, some claiming over 50 mile capability on a single charge

Tony
 

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