Hi, first time on here and I guess I'm just desperate for people to talk to who can understand. My story is similar to ASH78 and GABBYL. I am 34 and whilst symptoms showed since I was a teenager I was officialy diagnosed 12 years ago. I always knew something was wrong and for a long time was lead to believe it could be Motor Nurone Disease so when it was made 'official' I just carried on with my life as before - it didn't change anything. I split with my fiance last year as my symptoms got worse (I couldn't climb stairs, kept falling over and struggled to get out of a chair)he felt he couldn't cope. Since we split my condition has got worse and recently I have found myself getting so angry. I try to maintain a positive attitude and I really don't mean to sound self indulgent but I am so angry that this is happening to me and I can't live my life the way I want to, I would never dream of telling my freinds and family how I feel as I know I should snap out of it and I don't want them worrying about me so I was wondering if anyone else has expereinced feeling this way and has any advice to help me get back on form or if anyone wants to chat in general as am desperate to chat openly with people who instantly understand! Thank you so much!

I'm here any time you want to talk.I to share the same fears as you do.I don't know if I can be of any help but I will be a person that know exactly how you are feeling..If you'd like to talk you can write me. Write me any time..I'm here most every day.My name is Robin Hope to hear from you..I'd like to be able to share my feelings with someone who knows what I'm going through also.I'm sorry to hear about your break up..

Robin

Hi, i have not yet been given a definite diagnosis but i seem to believe i have lgmd. I visited 2 neurosurgeons, one suggested fshd (but facial muscles are normal) and the next one seems certain its a scupulohumoral dystrophy. My question is this, i have had shoulder weakness for the last 5 years or so... i can run walk and do all the other stuff with my legs normally. Are these symptoms similar to any of yours ? im 28 now. I found that this can be erb's lgmd but i didn't find much about it online. Thanks. S.

Yes that sounds very similar.I have been unable to raise my arms above my head since I was the age of thirteen.I do have some facial weakness such one eye doesn't close completely when I'm sleeping and I don't have a big smile..People are are always saying smile when taking pictures and I feel as though I am smiling as big as I can.I have lower back weakness.I'm very strong in my legs.That has been a blessing.Because of this I'm able to walk still.My arms continue to weaken though.

Yes i do have lower back weakness aswell... sometimes i feel tired in my legs... my therapist thinks it's just because im scared. I have no muscle wasting in my legs just my shoulders, even biceps havent wasted. Does lgmd usually start this way or is it just the erb type and fshd that start from shoulders ?

I think it's hard to tell.I believe it effects people in different ways depending on the person.Like me I come from a family that's very strong strength wise.My son is strong as an ox.So is my uncle.I believe I got that gene as well.I had test done about ten years ago in Memphis Tn and they were amazed at how strong I was in my legs.I'm 46 now and just now starting to feel weakness in my legs.My first symptom was when I was about thirteen.My mother was trying to get me to hold my shoulders up straight.She tried eveything on me.I wore a sling for 6 weeks thinking it was a pinched nerve.Finally my doctor sent me to a specialest.My biggest problem is in my arms but I feel the change coming on in my legs.My muscles burn like when you are over exercising them.

hmmm i was told that if its limb girdle and the onset is in the shoulders it takes quite a while to get to the legs, my first symptoms where at about 21. I still get my arms over my head but the right is a bit more stiff than the left. We'll see... like i said one said i god fsh and the other scapulohumoral, they both said i will not need a wheelchair... hope theyre right