I was just recently diagnosed with Limb-Girdle type 1B. I have 4 immediate family members that have MD, 2 to many years ago to know really what kind for sure. My cousin was told he had Atypical LG and my brother was told he had IBM MD. I finally seen the doctor and was tested and the DNA came back with the specific mutation that I have but also what the dr is sure my family has.
I am only 39 and have 6 kids, 3-21 so I still have little ones I would like to do things with and know I will eventually miss out on a lot. I was pretty sure I had MD but to get the call from the dr and told that yes I do for sure have it was heartbreaking.
My husband is either in denial or something as when I called him and told him he said the same thing as he has been..." we will deal with it as it happens". Not something I was really looking for but dealt with.
I am still at the early "stages" as I just have some upper arm weakness and leg weakness upon distance walking.
Looking for anyone that has this form or really anyone to talk to that can associate with what I am going thru physically and emotionally.
The following user gives a hug of support to Suzebell: 2807 (04-12-2012)
We are all here for you, this is a god place you have come accross. I can kind of relate to what you said your husband said as it does seem to be something that you have to deal with as it happens because for everyone it is different and you don't know what is around the corner or how far away it is...... there seem to be so many unknowns about this condition and for each person they are similar but different.
Thanks. Right now I feel alone in my journey, I know it is just the beginning and my support will get better, but I want to talk about it but have no idea where to start. Hubby has no clue about what will evolve over the next many years. He has seen my older brother get worse but is not there on a daily basis, where I have seen what my father and uncle and brother have gone thru. I think that hubby and I will need to have a day of just talking about everything.
Can I learn more about you?
Hi Suzebell well no one around me has it or in my family that we know has had it so that is where i differ to you. I just read Mandy37 comment about the parents feeling bad and guilty and mine are like that too. I am glad of this board because the people that you meet know EXACTLY the way you feel,which is a slight relief and doesn't make you feel quite so alone.
I am new to the condition only been diagnosed for 2years and am very much struggling to come to terms with it..accept it....handle it....cope with it....so keep in touch. Heidi x
The following user gives a hug of support to 2807: Suzebell (04-13-2012)
It has to be harder for you to deal with this having no idea that this was even a possibility. What form do you have? I am scared as I will most likely not be able to do much with my younger 3 kids (3, 5, 7) and that my hubby will not be able to deal with this and leave.
Have you gone to any counseling to learn to cope with your MD? I have thought about it and am going to talk to hubby to see what he thinks, he will most likely let me do what I think I need to.
I have not told my mother as she lives a few hours away from me and has recently lost her nephew who was more like a grandson so she is already dealing with a lot and can't bring myself to tell her. I know she will feel guilty that not only does 1 of her 3 kids but 2 have this.
I have times when I go to bed but can't go to sleep as my mind will not shut off all the thoughts I am having about my newly found condition.
I hope to find lots of people on here to help me and to also help them. If you need to vent let me know and have questions I will try to answer them as MD has been a part of my life for about 25 of my 39 yrs.
keep your head up and know there is people out there for you.
The following user gives a hug of support to Suzebell: 2807 (04-14-2012)
The Following User Says Thank You to Suzebell For This Useful Post: 2807 (04-14-2012)
Hi there, I have Limb Girdle but am waiting for muscle biopsy to confirm which specific type, I have a referral from the dr re the counselling but haven't been yet, hubby not too keen on idea feels it could make me think about it more and upset me more,but I do feel that I need to talk about it with someone I don't know as I get all teary when I talk about it and dr said it is dealing with a kind of grief ..loosing mobility...so not sure yet about that, let me know what you decide.
This weekend I have my inlaws staying and lovely people that they are I have found it quite tiring and that must be my condition and I find these days when there is too many people or too much going on I just want to withdraw and feel out of place. It also brings it to the surface of how I have changed and cannot do certain things anymore.
It took my bloood work sent for special dna testing to get what form I have and the dr thinks it is what my family has. Since they was able to get that on the blood work I won't have to have the biopsy.
I feel that getting some counseling is a good thing and hope your husband lets you, it will help you and if you are like me I am always thinking about my condition even though mine is still early I still have some symptoms. I am always wondering when it will become more prominant and what it will do to my family with having young kids.
I could see where having alot of people around could tire you out.
take care and keep me posted on how you are doing.
Just touching base Darla and seeing how things are with you?
I am feeling a bit sad today but am upset with myself for feeling so as it really doesn't help.........maybe I should go and put on some happy music Heidi x
The following user gives a hug of support to 2807: Suzebell (08-05-2012)
Thanks for checking on me. I have been having some down days lately, some because of the MD some because of my anti depressants have been changed and not working, then there is my husband and I not getting along.
I sure hope you are feeling better today. Did you ever get results to what type LGMD you have? Take care.