Advice needed

Kazzabell80

Hi

I was diagnosed as having FSH Muscular Dystrophy on Monday. My consultant said that he would arrange genetics counselling and some Physio....and that was it.

I am now at home and just don't know what to do. I have read up on the condition online, but have been given no leaflets or other information from the hospital, no numbers of support groups etc... What is likely to happen to me? Am I now classed as having a disability? Will I eventually have to give up work? (I currently have a desk job for the LA and work at a bar at weekends),
I know that I perhaps should have asked these questions when I was with the consultant but I was in shock and so just didn't say anything.

I have taken the last 2 days off work as I cannot face having to go in and talk to people about something that I know so little about, although I will have to go in tomorrow as I have no annual leave left.

My husband has been great...to a degree, but I don't think that he knows what to do or say. He asks me how I feel and tbh I just don't know, all I know is that I feel very sad. I am finding it very difficult to talk about it as it makes me so upset when I do as hearing myself say it out load makes it seem real

Does anyone have any experience of this condition?? Or know what I should be doing? I know that I have to inform my insurance and I have read that when I re-apply for a driving license it will be subject to a medical but is there anything else that I should do???

vintagebrighton

I guess the first step would be to google the condition and find out if there are any support groups where you can talk about this with people who understand. I know how you feel (from my daughter's point of view anyway) She was diagnosed with a condition that'll affect everything at the age of 22, was given a leaflet and basically told to go away. She was in shock for weeks and cried for days and didn't feel she could do anything until she found a support line and started talking and getting the practical information she needed. Take care x

floss2

I've done a quick google for you:

http://www.fsh-group.org/

http://www.muscular-dystrophy.org

http://www.nhs.uk

Hope these links help - I agree with Vintagebrighton that support groups can really help.

Kazzabell80

Thanks for your reply. I think that I will have to see what I can find out on tinterweb.

I am sorry for your daughters condition

I just find it really bad that the hospital can diagnose people with a muscle wasting disease and then send you on your way!