OT - Some doctors...

[Biscuitsmom31]

My DH has a form of LGMD (limb girdle muscular dystrophy). He was diagnosed at 18 (he's 34 now) but they haven't been able to identify which type of LGMD he has. We both really want to know specifically what's wrong because we have a 4 year old son together and he also has an 8 year old daughter (my DSD) and it would be a big relief to know how his MD is passed.

He underwent some new genetic testing a couple of months ago. Today, someone from the MDA called and said the results are in and the doctor wants us to come in together to discuss. He has had numerous genetic tests in the past and we've never had to come in, so I'm taking this to mean they've identified his MD. Here's the problem, they won't tell him anything over the phone and they can't get us in until JUNE 28. That's 2 1/2 months from now!

I know we've waited this long and the wait won't really change the outcome, but it's really frustrating to hear "We've found the answer!! - but we're not telling you for 2 1/2 months." I really just want to hear one word - recessive.

 

[SueM in MN]

that really stinks.
To know the doctor knows, but you and your DH can't find out for so long.
I would think a week or 2 would be difficult, but maybe understandable.
To wait until the end of June is like torture.

Hope when you finally get it, that it turns out to be good news.

 

[Biscuitsmom31]

that really stinks.
To know the doctor knows, but you and your DH can't find out for so long.
I would think a week or 2 would be difficult, but maybe understandable.
To wait until the end of June is like torture.

Hope when you finally get it, that it turns out to be good news.

Thank you Sue!

 

[Grace&Carolinesmom]

Just a thought.....Have you tried leaving a message to have the doctor call you? I have had trouble in the past getting quicker apts and by tt the doctor directly, we were able to get in asap b/c they understand the the situation and the office staff is usually told to make no exceptions, follow the rules, blah, blah, blah. When you call the office just ask for the doctor's voicemailbox....it worked for me and maybe it will work for you. Couldn't hurt, right? Good luck

 

[Biscuitsmom31]

Just a thought.....Have you tried leaving a message to have the doctor call you? I have had trouble in the past getting quicker apts and by tt the doctor directly, we were able to get in asap b/c they understand the the situation and the office staff is usually told to make no exceptions, follow the rules, blah, blah, blah. When you call the office just ask for the doctor's voicemailbox....it worked for me and maybe it will work for you. Couldn't hurt, right? Good luck

I would definitely try that but I'm in an akward situation. I'm a paralegal at a law firm and DH's doctor is a client. I'm actually doing some corporate work for him right now (well, I'm supposed to be...I'm obviously goofing off at the moment!) and I don't want it to appear that I'm using the firm or the fact that I'm doing work for him to get special treatment. My bosses would flip.

 

[SueM in MN]

I would definitely try that but I'm in an akward situation. I'm a paralegal at a law firm and DH's doctor is a client. I'm actually doing some corporate work for him right now (well, I'm supposed to be...I'm obviously goofing off at the moment!) and I don't want it to appear that I'm using the firm or the fact that I'm doing work for him to get special treatment. My bosses would flip.

Well, how about if your DH calls???
And, someone else made a good point about calling. There are some office staff who see themselves as the "guard at the door" to keep people away from contact with the doctor. Sometimes the doctor is not aware that the office staff are doing this.

 

[Biscuitsmom31]

Well, how about if your DH calls???
And, someone else made a good point about calling. There are some office staff who see themselves as the "guard at the door" to keep people away from contact with the doctor. Sometimes the doctor is not aware that the office staff are doing this.

I agree, but I can't convince him to call. He's one of those "take their word for it" kind of people. He's also much better at waiting. (I'm not very good at it.)

 

[SueM in MN]

I agree, but I can't convince him to call. He's one of those "take their word for it" kind of people. He's also much better at waiting. (I'm not very good at it.)

Well, if he's good at waiting and won't call, I guess you are just stuck waiting.

hope the time goes quickly for you.