inclusion Body Myositis

[Bill]

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

Hi. Mine came on over Xmas just gone. As you say gettting diagnosed is the problem. I have had 3 mri scans so far and have another on Tuesday. Good to hear about this new drug. I too cannot do stairs. I some how get up at night but it destroys me. I'm still working but I don't do anything lol. City have looked after me also. For aways I ring ahead and book a disable space with the club we play.
I have bought 2 scooters.one I keep full time in my boot it breaks up in to 5 pieces. Got it off eBay £129. Best thing I ever bought. That's goes abroad with me. I have another that I keep at work for whizzing round Denton. That was eBay again and cost £230. That does 36 miles.
A word about my staff and customers they have been incredible and my wife even more so. We all need support at times so if there is anything I can help with you bloody tell me.


Oh and get a scooter ,Just use it now and then . I look a **** but I did before so no mither :)

 

[MaineDAWG2008]

https://www.420magazine.com/forums/medical-marijuana-lounge/249835-inclusion-body-myositis.html

Cbd might help. Read

 

[mosssideblue]

Hi. Mine came on over Xmas just gone. As you say gettting diagnosed is the problem. I have had 3 mri scans so far and have another on Tuesday. Good to hear about this new drug. I too cannot do stairs. I some how get up at night but it destroys me. I'm still working but I don't do anything lol. City have looked after me also. For aways I ring ahead and book a disable space with the club we play.
I have bought 2 scooters.one I keep full time in my boot it breaks up in to 5 pieces. Got it off eBay £129. Best thing I ever bought. That's goes abroad with me. I have another that I keep at work for whizzing round Denton. That was eBay again and cost £230. That does 36 miles.
A word about my staff and customers they have been incredible and my wife even more so. We all need support at times so if there is anything I can help with you bloody tell me.


Oh and get a scooter ,Just use it now and then . I look a **** but I did before so no mither :)

Thanks Bill. I play golf and this season had to concede and buy a sit on buggy, what a difference that makes. You were probably the same but having been healthy all my life (25 years in RN) played Rugby etc, It came as a shock to realise that no one is infallible when it comes to health and the realisation of becoming more and more disabled was a hard pill to swallow. I am over that stage now and accept what I have. Will look into getting a scooter

Tony