Re: Imagine this

[Guest guest]

Glad to see you checking Shane, what sleeping pill are you taking? My

ambian had to be increased to 1 1/2 in the beginning and now I am back to

the one pill. This will all even out in time, you are almost done with your

1st month, amazing how fast it can go. Lynne

[ ] Imagine this

Well here it is 1:45 a.m. and I am awake again. You know what really

sucks, I took a sleeping pill at 11:00 to help me sleep tonight. Fat

chance of that working. (Sorry liver, didn't mean for you to have to

process something for nothing)

Well I am going to sit here and eat sweet-tarts and wait for my body

to decide it's time to try the sleep thing again.

Jen and Tommy look so peaceful sleeping tonigh (i'm jealous)

Well all have sweet dreams, I am up for a while

Regards,

Sleepless in Texas

[Guest guest]

Sucks, don’t it? During this period,

I asked my wife not to come to bed, if I was already asleep, one little jostle to wake me up and I was burning the midnight oil. –dz- Good luck, hope your sleeping

gets better. I found reading helped me get relaxed enough to fall back to sleep

again. –dz-

[ ]

Imagine this

Well here it is 1:45 a.m. and I am awake again. You

know what really

sucks, I took a sleeping pill at 11:00 to help me

sleep tonight. Fat

chance of that working. (Sorry liver, didn't mean

for you to have to

process something for nothing)

Well I am going to sit here and eat sweet-tarts

and wait for my body

to decide it's time to try the sleep thing again.

Jen and Tommy look so peaceful sleeping tonigh

(i'm jealous)

Well all have sweet dreams, I am up for a while

Regards,

Sleepless in Texas

[Guest guest]

Sometimes I took a second one, even though

my dosage was never increased. I also had xanax and I

tried to balance them. When I woke up at night, I’d have to determine,

how much time I had before I had to get up, before I decided what, if anything,

I could still take. If I had 4 or less hours I’d just take a xanax, otherwise I’d pop a second ambient. –dz-

RE: [ ]

Imagine this

Glad to see you checking Shane, what sleeping pill are

you taking? My

ambian had

to be increased to 1 1/2 in the beginning and now I am back to

the one

pill. This will all even out in time, you are almost done with your

1st month,

amazing how fast it can go. Lynne

[Guest guest]

Hattie,

The most common reaction I get from medical professionals is that they

recall something from med school about CMT, but have never encountered it and

don't know what it is. I'm almost sceptical when someone says they do know what

CMT is, wondering if I've encountered a know it all that just won't admit to not

knowing something.

When I was doing telephone tech support I developed some basic instructions that

let me know the skill level of the person I was attempting to assist. Maybe we

need the same for CMT.

O

[Guest guest]

My daughter just went for a MRI yesterday and the nurse told me she actually

looked CMT up before we got there so she'd know something about it because she

had never heard of it. It is scary to think of all the doctors that don't have a

clue and are misdiagnosing people. My daughters pediatrician had only heard of

it in his book during med school he had never seen it until her. He didn't

diagnose it his self he referred me to different doctors till we got a accurate

diagnoses.

[Guest guest]

Lots of Laughs about Drs and CMT. I was referred to a pain specialist by my

neurologist. I went to my appt and I was then led to a room by the drs nurse.

After taking my vitals she asked why I was there. I told her I had

Charcot-Marie-Tooth. She then asked me to show her what tooth was hurting me.

After I told her what CMT was we had a GREAT LAUGH, and I still chuckle when I

remember this.

[Guest guest]

Hi everybody!!!

Really it isn´t a surprising thing, remember CMT is classified like a " extrange

disease " ... When I began my clinical practice in a pediatric hospital I had

pneumony (I don´t know if this is the correct word in english), terrible because

it was caused by a intrahospitalary " bacteria " . When my mother arrived with me

to ER the ugly doctor screemed her because she -the doctor- didn´t understand

what about my mother was talking about. Passed near three days, with me in th

ICU until they discover the reason because my pneumony was so severe...

Unfortunetly physicians not ever listen the people without white clothes. The

funny is that in my normal life, I wear white clothes too...

[Guest guest]

I have to chime in here and have a bit of a laugh with you

all. ....I am a doctor.... and I didn't know that I had CMT until

last month. It was something I heard about in med school in my

neurology course (one month to learn every neurological disorder

that exists, both central and peripheral, aquired and inherited). I

think there was one slide, out of focus, of a " Charcot joint " which

was a deformed ankle from repeated injury. Then it was on to

muscular dystrophy and Lou Gherig's disease. It's really not their

fault. We learn as much as we can stuff in our heads about general

things, then go on to become experts in a very small slice of the

whole pie. I would be shocked if a neurologist didn't know (and in

fact was shocked when MY neurologist told me she had to do some

reading when my test results came back after she sent

the " demyelinating panel " to genetic testing). I certainly would not

be surprised that docs who specialized in other things have never

heard of it. I guess I want my ER doc to perfect his intubation

skills in case I need it than researching all the diseases that

affect humans.

I have learned a lot in the last month!! Have been doing a lot of

reading (I'm a transfusion medicine doctor -- can tell you lots

about thrombotic thrombocytopenic purpura -- ask your doc if he

knows how to treat that!) but didn't know a thing about CMT.

We're only human too, but I agree, it's frustrating sometimes. And,

btw am not offended, am laughing with you.

Holli

[Guest guest]

Hi Holli,

I had a charcot joint (and yes, I have CMT2 as well) in my foot. X-rays

really did look like an out of focus slide, because the bones were so broken up

it was all just mush.

They replaced the broken bones with cadaver bones and fused it all. together.

O

[Guest guest]

OK, I have to tell my story,. These are all great by the way. I went for many

years not knowing I had CMT type 1A. I assume there are a few others out there

as well. I had all the usual problems as a kid. teased a lot. Could not run,

jump, sale a fence, etc. My buddy to used say we would all be walking to

school, one minute Matt is there and next minute he is on the ground and not

talking anymore. He used to tell people I tripped on leafs, I actually began to

think it was true.

My mom is a nurse and we had many DR's growing up. No one knew what was wrong

with me. Nothing new I guess, back then anyways. When I got married I got a

new DR. and I used to think I was having chest pains, for years. I smoked back

then. She did ever test and everything came back negative. She even sent to a

Neuro. He did my first EMG, like I will ever have one of those again. that was

the worst, the Neuro doing the test kept asking why I was sweating so much, I

told him it was the pain of you shoving that huge needle in my leg. Anyways I

digress. I say him in the office a couple of weeks later and told me I had a

mild case of nerve degeneration. I said what is that, he said it meant that

your nerves worked slower then a normal person. I said OK then what do I do

about he said nothing. Come back and see me every 5 years and we will see if it

gets worse. I said OK, and went on my merry way.

About 3 years later, I fell asleep on the couch one night with my feet crossed

Woke up 4 hours later and could not walk. Both legs were totally numb, it took

days to get back to normal. It was over a day before I could even limp around

again. Anyways saw my GP again she referred to a foot Dr. for my first pair of

orthotics, of course I have the high arch and hammer toes. That Dr. took one

look at me and I think you have CMT. She referred me to another Neuro guy and

he was at the University here in town and which is a teaching hospital. The

intern came in, I asked if he was going to do a EMG, and he said he did not

know. This of course was the first thought on my mind. He finished his exam,

then in came Dr. Mark Tarnapolsky. The man who changed my life. There I was

sitting on the table, in a gown, waiting to find out if he was going to do the

EMG. He came in, shook my hand, lifted the blanket, looked at my feet and said

yep you got CMT, probably 1A but lets draw some blood and confirm with DNA. He

then sat down and we talked for 20 minutes. He did the usual strength tests,

reflex's etc... He is a wonderful man and a great Dr.

Now to Holli's point about Dr's not knowing everything. My GP once said to me,

and it is very true medicine is much like computers (her Husband is into

Computer's, I am a network Engineer) you rule things out one at a time until you

find the problem. I am not very surprised to find out that most Dr's have not

heard of CMT, most say I have heard of it just don't know what it is. Like

Holli, probably saw it in a text book once. What upsets me about this story is,

in my opinion a Neurologist should know what it was and in my case the first one

had the data in front of him and still did not catch what I had. That will

bother forever I think. I sure am glad I feel asleep on the couch that night.

Holli you sure are correct, you can't know everything about medicine.

Have a good day all,

CMT 1A

6000 Mg, Vit C/per day, Vit E 400UI twice/day (fell better then I ever have)

[Guest guest]

I look at it this way.....as challenging as it is for us to have CMT, we have

been given something special to learn about, live with and teach others

about.....if we can keep the focus on helping others understand more then.

hopefully, it becomes less frustrating for us who are dealing with it. I figure

it is my way of learning patience, understanding, fortitude, and my way of

helping society increase their knowledge of something that most(Drs included)

have little knowledge about. Your finger will improve and you have helped to

improve the Drs, etc scope of knowledge!!! Good job!

Sharon

[Guest guest]

Hi Holli,

My name is Holly, too. I am " retired " from the medical field. I

worked 12 yrs. as an R.N. I had never heard of CMT either. I

don't even recall any mention of it in nursing school. It's true

about most M.D.'s only having " heard " of CMT during their course

study of neurological disorders. Which is unfortunate for people

with CMT especially being from a small town like I am from.

I was diagnosed in college when I started having trouble walking

between classes. My left leg went to rubber. The campus dr.

watched me walked and really didn't know what was wrong, however, I

was lucky enough that he referred me to a podiatrist who upon seeing

my legs & feet, asked me if I had heard of CMT running in my

family.

He further referred me to a neurologist who immediately

knew that I had CMT in which NCV studies confirmed. Anyways,

I recented started seeing a new Dr. She admitted that I was her

first CMT patient and that she had heard of CMT but would

need to update herself on it. I was glad that she was truthful. Of

course, I was prepared for the dr.s visit and already had

information on CMT printed out to give to her.

Anyways..... yes, it is frustrating that most Docs don't know

anything about CMTbut you explained it very well as to why this

is..... cramming all that info in over one course. I can't even

imagine! Nursing school was hard enough!

b.t.w. Yes, I have had a patients with thrombotic thrombocytopenic

purpura and unfortunately, one patient's Dr. didn't really know how

to treat it, the patient coded & died.

Glad to have you in this forum and glad you can laugh with us. Lots

of good stuff here. I read most all the posts. Did you have DNA

testing? Which type do you have? Does any of your family have

CMT I mean, this may have been an " aha " moment for you in

realizing that other family members are affected, just never put

your finger on that there was actually something wrong.

Holly

[Guest guest]

I'm absolutely shocked and horrified to hear of everyone's " not

knowing " docs about CMT. I guess the stars were aligned for me as a

kid, and orthopedists knew they're stuff, since my original

diagnosis was in 1962 and a highly skilled ortho/surgeon diagnosed

me mostly from watching me walk and looking at my shoes. The surgery

he did that same year on me has lasted all this time. He was a great

man, Dr. Marshall Urist, in Westwood, California, he was also on

staff at UCLA after that.

All of the neurologists I have seen have known about CMT, but

because it affects everyone differently, the question posed to me

is " how are you affected " ? So I end up the teacher. We knew early on there was

no specific treatment, so my neurologists did they're best to treat symptoms and

take care of me.

As for ER docs, I don't expect them or the staff to know about it,

nor do I expect GPs or Internist to know. My times in the ER were

totally unrelated, either I needed to be stitched up, bleeding

stopped, or be admitted for tests, and with admission, sooner or

later would walk a neurologist. I think the world of ER docs,

handling so many different scernarios and people on a daily basis

must be so stressful and the ones I have seen have been great men.

I do feel, as you all do, that GPs and Internists need to know at

least the basics - I have done so much educating myself, lol,

sometimes I feel like they should pay me for my services! It is a

shame that research docs and other academics don't offer to train

new docs going into Internal Medicine. But academic medicine and

private practice medicine are two distinct 'animals'.

With CMT being about 6-7 million years old, and with more than 100

years since Charcot, Marie and Tooth gave it a name, now we finally

have a few emerging 'therapies' in research. Seems to me we should

be WAY father along than this. I don't think it is a money issue,

meaning raising more $ for CMT, but that it is a 'communication'

issue, and most importantly, I feel CMT IS in fact a 'public health

issue' and needs to be addressed as such.

~ G

[Guest guest]

I never thought that my sharing this would lead to such an 'ongoing'

conversation. I am in no way putting down the drs that don't know anything about

CMT and I am glad that there are ER drs and doctors for other medicines as well.

I am sorry if I have offended anyone of the medical field or anyone else for

that matter. I just wanted to share something that I thought was funny in my

experience with CMT. I have had drs and therapists insult me as to the way I

walk and the dr I had in the ER was kind and considerate and I enjoyed talking

with her. I do think that since more and more people are being diagnosed with

CMT that those teaching in the medical fields should include more on the subject

than just a cursory glance at it. Thank you.

Hattie

[Guest guest]

I also was going to be part of research at Duke University for healthy lunged

people vs. non or something. Anyway, they had no clue what CMT was and emailed

me questions about it. I told them what it stands for so they could look it up

themselves. I would hope that medical students receiving their MDs would at

least know how to use medical books where they could look this stuff up.

Dawn

[Guest guest]

I get tired of doctors not knowing what CMT is....but even more tired when they

don't care to learn about. Their disinterest is very annoying to me. Then when I

get meds that make me worse because they don't believe me or will not read up

about CMT looks to me that they don't have the time or interest...my

disappointment and trust level drops even more.

Geri

[Guest guest]

My own doctor who is familiar with neuromuscular diseases and CMT explained it

well to me. He said we know so much more about our own conditions becasue it is

the only thing we have to learn and he gets very educated from his patients. It

is probably impossible for a doctor to know every possible anomaly out there.

jackie

[Guest guest]

Jackie,

I know that's probably true but it's their job to know these things.

Dawn