Re: Remember When I Was Posting About My Muscle Twitching

[Guest guest]

,

I'm sorry to hear you are going through this. It is scary not to know what's

going on. You are in good company here. I think just about all of us have

experienced the odd look, the shrug and the dismissal until it turns into

something recognizable from the doctors (I get that and I AM one). We all

sympathize and we're with you. On the bright side, the EMG is something concrete

to follow up on and get this solved. So glad you found the other medical group.

Good luck.

Holli

>

> This is happening in my shoulder blades and traveling down my arms and also

happening in my hip sockets. I am also having pain in places other than my lower

arms and legs. Lots of thigh and left arm pain. Turns out this does not appear

to be CMT related. I had an hour long EMG yesterday with abnormal results even

for CMT including abnormal results in my neck and shoulder.

>

> I am freaking out. Looks like I may have two neuro problems instead of 1. I am

so worried I may have something like ALS. Let's hope not. It could be many other

things, but my mind always goes worst case scenario.

>

> I am also the gal, who quit my job because of fatigue and pain and am worried

about continuing health coverage and paying my bills. On COBRA now, so

everything is OK for now.

>

> When I went to Baylor with unusual complaints a month ago, they shrugged their

shoulders, said something other than CMT must be wrong with me, and sent me on

my way. " Maybe you should go to your GP. " they said. The bedside manner felt

cold and indifferent to me. However, the docs at Methodist ordered tests and

things are moving toward finding out what is wrong. They also seemed concerned

and caring. They spent two hours with me in the examination room!!!

>

> I am sharing this part of my experience in case anyone out there is in

Houston, TX. If you go to Baylor and are happy, please disregard this. Truly. I

feel like it is very important to feel comfortable with your doctor and your

experience may be quite different from mine. However, if you are in Houston and

shopping around, I am really blown away by my experience at Methodist and this

is the MDA Clinic.

>

> I hope I will find out something about what is going on with me by the 8th. I

may need an MRI. I don't know. I will keep you posted.

>

>

>

[Guest guest]

Thanks, Holli. It really helps to read your kind words, as I am on the verge of

tears almost every minute worrying about the future of my health and my family's

finances. I'm hanging in there and lucky to have a very kind and supportive

husband.

> >

> > This is happening in my shoulder blades and traveling down my arms and also

happening in my hip sockets. I am also having pain in places other than my lower

arms and legs. Lots of thigh and left arm pain. Turns out this does not appear

to be CMT related. I had an hour long EMG yesterday with abnormal results even

for CMT including abnormal results in my neck and shoulder.

> >

> > I am freaking out. Looks like I may have two neuro problems instead of 1. I

am so worried I may have something like ALS. Let's hope not. It could be many

other things, but my mind always goes worst case scenario.

> >

> > I am also the gal, who quit my job because of fatigue and pain and am

worried about continuing health coverage and paying my bills. On COBRA now, so

everything is OK for now.

> >

> > When I went to Baylor with unusual complaints a month ago, they shrugged

their shoulders, said something other than CMT must be wrong with me, and sent

me on my way. " Maybe you should go to your GP. " they said. The bedside manner

felt cold and indifferent to me. However, the docs at Methodist ordered tests

and things are moving toward finding out what is wrong. They also seemed

concerned and caring. They spent two hours with me in the examination room!!!

> >

> > I am sharing this part of my experience in case anyone out there is in

Houston, TX. If you go to Baylor and are happy, please disregard this. Truly. I

feel like it is very important to feel comfortable with your doctor and your

experience may be quite different from mine. However, if you are in Houston and

shopping around, I am really blown away by my experience at Methodist and this

is the MDA Clinic.

> >

> > I hope I will find out something about what is going on with me by the 8th.

I may need an MRI. I don't know. I will keep you posted.

> >

> >

> >

>