PT + docs

[Guest guest]

Maureen and Debi,

In all of my experiences with PT (that's been about 3-4 times in my

life) I have made DA** sure they know I have CMT and they are not to

push me. I will do what I can, as I can. One of my first sessions of PT

this summer in the pool began walking in water. The PT screamed at me

" Put your heels down first! " " Can't " , I said, " I'm a toe walker and need

my orthotics " ! So, after that, I took my orthotics out of my regular

shoes, put them in a pair of pool shoes, and then I could do the

walking-in-water laps. (orthotics are OK to get wet) Because of my disc

problem, it was hard sometimes to complete 'their' curriculum - what

they (PTs) had in mind for me. I would just stop sometimes 1/2 way

through and do another exercise - pacing myself!!! 2 key words - pacing

myself!

And about the Drs. and medical files: I can totally relate. I had a

hospital 'loose' my MRI earlier this year. They said it was sent to my

Dr. But Dr. said he hadn't received it. Weeks went by, I called, I

checked, UPS and the USPO put tracers on my MRI. Lo and behold, one day

Drs. office calls me " we have your MRI here - we sent it to the wrong

address and it came back " ! I suppose one needs to allow for human error

in these instances, but treatment of my back was waiting the Drs. view

of my MRI. I just lived in misery on pain pills last Spring.

It is my opinion that medical records and test results from 1 Dr. to

another sometimes don't get there, then if they do, they get 'filed' in

either the 'round file' or maybe the patient's file. I have had to get

tough with all my Drs. and files and now I always ask for a copy of

everything that's in my medical file, for my 'at home medical file'. I

also write out 'notes' for 'my files' regarding what the Dr. said, what

I said, what comes next, etc. Helps me to have my notes handy like this.

PS. I am now seeing a wonderful new neurologist in a small town near

where I live. In one week's time he has managed to review both my MRI

and my EMG and his office just called to get my next appointment made -

for this Friday! To have things happen this fast is 1) almost suspicious

(lol) and 2) wonderful! Also, everyone, apparently there is another lab

in Santa , California now that is doing the CMT DNA testing. That

is good news too.

Sorry to go on and on. It's the caffeine. I swore off for 4 months - but

broke down today! ~ G

Felletter Zoo wrote:

>

> Hi Debi, My son has just been diagnosed with CMT and already I have had it

> with the doctors! Let's see-our first visit to the orthopedic specialist he

> sent him for hip xrays, PT 3x's week for 6 weeks, and to see a

> neurologist(that appt was scheduled 4 MONTHS

> later). Well, we went to the nuerologist (a 2 hour trip one-way) and spent a

> total of 20

> minutes with the dr. She had my son get the dna blood test and wanted the

> emg in 3 months. Away we went home with a prescription for OT for 1x week

> for 3 months (no PT).

> We then went to our scheduled follow-up appt with the ortho. specialist.

> They could not find the xrays. I was told if they didn't recognize the name

> they may have sent them back! HUH????? I also asked if he had a pretty good

> idea if this was CMT before he sent us and he said yes. Well that being the

> case, shouldn't ALL of the tests been set up for our

> visit to the neurologist? (oh, she also had no info on my son at our appt)

> That brings me

> to another issue: the orthopedic specialist sent my son for PT and my son

> would come out absolutely exhausted with his legs shaking-I now find after

> doing research that this

> is the absolute worst thing you can do to CMT affected muscles! If he

> thought this was CMT why didn't he instruct the therapist of this???? I

> can't wait to ask im this when I see him. Lastly- I have been calling the

> neurologist office for over a week now trying to get the results of the DNA

> test which they have had for that long. I can never talk to a human

> when I call and must leave a message, whereby they then call me back when I

> have already left for work-after telling them when I would be leaving. Now I

> get a message on

> my machine that our appt for this Thursday-which I have already scheduled

> time off from work- may have to be changes because the dr is on jury duty.

> This is DuPont childrens Hospital who are supposed to be one of the best.

> Needless to say-I am totally disgusted with these dr's and would like to

> find others. Anyone know of some good ones in the town, PA area?????

>

> Sorry this is so long, but I'm sure you can see my frustration!

>

> maureen

> From: <dcscaggs@...>

> <egroups>

> Sent: Monday, November 06, 2000 3:03 PM

> Subject: [] (unknown)

>

> > Hello all,

> >

> > I recently went for my latest visit to the neuro. They were

> > suppose to have had some test (blood test) done on me but had not so

> > the doc just talked to me for 5-10 mins. At the regular doctor office

> > visit charge, of course. That's another story.

> > I was really a little disappointed in this doctor, my second time

> > to see him. Not only did the test mix up happen but I asked about a

> > doctor's note to get handicap seating at public events and he said

> > " No. "

> > He wants me to have PT first then if I still can't climb stairs he'll

> > give me a note. Is this typical or exceptible? I was really shocked

> > when he said no. What do I do until I " learn " to climb stairs again,

> > stay at home I guess. Debi

> >

> >

> >

> >

> >