Happy New-Year everyone.....
where do i start ,,i am totally confussed and as per usuall i carnt do a thing untill next week when the muscle clinic opens..my son keown visited the muscle clinic in december with me and his dad..he went through he normal routine check and things were ok or so we thought.....the consultant on the day was not very helpfull...i asked him questions what he couldnt answer....yes i thought as much !!! everyone is an experiment to them and they learning from people with the condition..or so i think or felt on that day.....to top it all off i received a letter this morning and it says keown showed a typical picture of becker muscular dystrophy with limb girdle weakness....im totally confussed...i didnt think you could get 2 in 1...... Does anyone know what this means....i am baffled..on the day in question nothing was mentioned to us about limb girdle..but to see it in black and white is mind boggling..... sorry for ranting on as anyone heard of this

joanne xxx

Hi Joanne, Happy New Year to you too! 

Please don't read too much into them using the term  Limb girdle weakness.    I really don't think this means he has both BMD & Limb Girdle.  I think what they are saying is that he has weakness in the limb girdle areas.  Shoulder weakness & Pelvic Weakness.   I know how hard it is to not push the panic buttons sometimes.  I have to remind myself of that too sometimes.     Hope you had a good christmas! 


best regards,

Roxanne.

Thanks roxanne..hope you had a lovely christmas two ...will let you know the out come after i have spoke to the consultant ..waiting for him to ring me back

Hi Roxanne…spoke to the professor yeah that’s what he was saying weakness in the limb girdle areas…there letters are so confusing though it is the way they write them…if something isn’t explained then the brain goes into turmoil …maybe I panicked because limb girdle weakness hadn’t been mention before ….where has every one gone ?? no-one ever on site any more

Hi Joanne,  that's what I thought.  I know,  the way they word these things.. you need to be a doctor yourself sometimes.  .   It's sad people don't visit  here much anymore, not sure why.   After all we need all the support we can get with dealing with this disease.

take care & god bless

Roxanne.