Re: Any nurses with CMT out there?

[Guest guest]

Yes, there are other nurses out here with CMT.

Dan, RN

[Guest guest]

Hi, I'm in nursing school right now. My husband is a NP, and says

that there are " many " opportunites for me in nursing, as in, don't

require being on my feet 24/7, but I'm not sure of the specific kinds

of positions.

Those of you who are RN's, what exactly do you do? How

severe is your CMT and how did it affect you in your training and

career? Did you have to get any modifications?

I hope to be starting clinicals this summer, and one thing I'm nervous about is

the shoe uniform which requires solid white shoes. I'll buy a can of white spray

paint for my regular shoes before I'll wear something that I can't function in.

Very few shoes work for me anymore. My husband says not to worry about it, but I

hate standing out and having to explain myself.

[Guest guest]

Hi Dan.

Thanks for posting! I assume you are an OR nurse based on your

email address. I am a recent graduate (May 2006) and I work part time in a

family practice clinic. I was diagnosed 2 weeks before I accepted this

position. I really want to be in a hospital setting but took the office job

because I thought I wouldn’t be on my feet so much and it would be less stress.

Well, I am on my feet pretty much all day and work from 8 a.m. to

5:30 and yes there is stress. I don’t sit much until 7p.m. or so. I feel like

I could handle the hospital now and am trying to decide whether or not to apply

there.

How severe is your CMT? And how do you manage working in a

hospital? I have what Dr. Shy in Detroit has labeled “very mild CMT” .

I’d love to get your input if you have the time to write. Thanks

Patty

_____

From: [mailto: ] On Behalf Of

ddolan1991

Sent: Wednesday, February 21, 2007 8:42 AM

Subject: Re: Any nurses with CMT out there?

Yes, there are other nurses out here with CMT.

Dan, RN

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3:19 PM

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3:19 PM

[Guest guest]

Hi. I just graduated last May and am working part time in a family practice

clinic. I began to have problems mid way through my last semester of

nursing school. I went to Cleveland Clinic in June and was given the

diagnosis and got the confirmation by the DNA test in August just 2 weeks

before starting my first job in nursing. I believe I pushed myself to do

everything …take care of my home, my family, get straight A’s in school. I

was not happy with a B or even an A- in nursing school. I wanted perfection

and this lead to an extreme amount of stress (duh). I was preparing for my

boards and final exams, planning my son’s 8th grade graduation party, trying

to do whatever I could for my kids school, stressing out if I didn’t have a

nice meal on the table with a clean house to go along with it. I about had

a nervous breakdown.

Last March during all of this drive for perfection, I

began to have numbness and tingling in my hands and feet. I would have

waves of numbness travel up my body to the point I was afraid I was going to

pass out. My legs became very weak and would “hum” for lack of a better

description. I would lay awake at night and think I had all of those

diseases I learned about in nursing school. I was sleeping less and less

from pure fear of what was wrong with me. I had periods of uncontrollable

crying spells and would stay in my bed because I felt so weird.

Thank God

for my doctor and Lunesta! She didn’t believe it could all be simply

stress. She ordered an EMG (after many other blood tests, MRI’s, etc.)

which was extremely abnormal. I was originally diagnosed with Guillian

Barre Syndrome but after seeing a neurologist it was determined that I had a

hereditary neuropathy. I went to Cleveland and that is where they diagnosed

me with CMT. Dr. Tsao put me on Neurontin (my hands and feet were humming

and felt like I had recently pulled them from an electrical socket). He

thought that I also had a viral component to my diagnosis that caused my

extreme weakness and fatigue. I was so run down and burned out in hind

site. After I was told that my EMG was extremely abnormal and that my nerve

conduction was half of what it should be, I said “I’m glad its not all in my

head, I thought I was having a nervous breakdown” His reply was “well, in a

sense you are right, your nerves were breaking down” I know it sounds

kind of sicko of him to say that but it made me laugh from sheer relief that

it was not all in my head. My CMT is mild at this point thank God.

I am

doing so much better now. I have very mild symptoms. I work 8-10 hr days

with relatively few problems. I am tired at the end of the day and

sometimes my legs will ache but so far that’s the worst of it.

Anyway, if you couldn’t tell, I love to talk :-) The short of it is that

nursing school is very stressful but it is one of the best things I have

ever done. It is extremely rewarding and fulfilling. My advice to you is

to make sure you have plenty of support from your family and friends. And

most importantly don’t make the mistakes I did. It is ok to get a C, in the

end you are still a nurse. As for your shoes, we had to have all white

shoes too. If you can’t find any that work….confide in your clinical

instructor and I am sure she will work with you on getting something that is

acceptable. In my last semester, I wore white Asic running shoes with a

blue stripe and no-one ever said a word.

While you are in nursing school, take lots of time outs. Relax when you

can…make yourself. Try to keep your stress level down as much as possible.

This means meticulous study habits and planning your time wisely. Don’t get

involved in study groups that waste time. Pick your friends wisely and set

time limits for your study groups.

Now, tell me about you. When were you diagnosed? Are you in ADN or BSN

program? Do you have kids? And what kinds of symptoms do you deal with?

Thanks for reading my book :-)

Patty

[Guest guest]

My official diagnosis occurred somewhat late, at age 49. There

likely would have been a diagnosis earlier but I was busy floating on the river

called De Nial.

I had led an active life, ie., downhill & cross country skiing,

hiking, bicycling, sailing, camping, climbing, organized sports,

etc. From the early 90s, orthopods (in surgery) accused me of having a bad ACL

because of a limp; however, drawer & Lachmann were normal. I got weaker at work

(RN First Assistant, scrub nurse, and if I had to, circulating nurse) and

started falling a few times. I had a neuro eval as there was a slim possibility

of post-polio syndrome (the good news, it wasn't PPS. The bad news: it wasn't

PPS). There is no known history of CMT in the family.

Once I acknowledged I had something, a version of CMT-2, progression

was somewhat swift. Soon, I was in AFOs for severe bilateral foot

drop. My CMT is upper and lower extremity with some trunk weakness. LE

reflexes gone of course, upper diminished. Bilateral LE and UE atrophy; the

interosseous muscles in the hands are way small.

Balance went - ya shudda seen me gown & glove myself while 'dancing' to maintain

some sort of balance. This is predominantly motor with only slight sensory

involvement. There is no specific pain unless I incur an injury from falling.

After a great deal of walking, the knees do hurt becasue of the funny gait.

Arm, leg, and trunk strength continued to decrease; I couldn't even

open needle holders and hemostats one-handed anymore. I chose to

leave nursing 5 years after diagnosis rather than press to test so to speak by

injuring myself, a patient, or damage equipment by falling or lack of strength.

My nursing expertise is really only in the OR (23 years) and I did not want to

readjust into something else.

I found a gummint job where I was not in nursing but able to use my

medical/nursing knowledge. While this was low impact, I started to

fatigue severely after a coupla days at work. As no part-time work

was available, I resigned; medical retirement is pending.

Otherwise, how are you?

Dan

[Guest guest]

, I would recommend that you do what you feel you are

physicially capable of doing. Capable and safe, with a view to your

future health too. How's that for a cop-out?

That said, you must be aware that hospital/floor nursing can be

extremely fatiguing. The ONLY floor care experience I had was as an

LPN while in nursing school - I found that a 6-7 patient load was

tiring, and my CMT symptoms (although diagnosable in retrospect) then at age 44

were very mild.

The profession of nursing might be related to how a group of people

who are blind describe an elephant. The one who feels the legs

thinks elephants are like trees; for the one who touches the trunk, a snake.

For the one who touches the body, a great wall. Nursing is a broad field -

unless you have a buring desire to work in a hospital setting, you likely can

continue working for a long time in a clinic setting, safely for you and your

patients, and leaving enough strength to have a some sort of life outside of

work. Besides, in a FPC, you might be able to concentrate on the

prevention/teaching aspects of nursing rather than disease cure.

I consider the neurological/muscle wasting/balance aspects fairly

severe. There are no contractures, foot problems, etc., though. I

myself no longer work as a nurse although I keep renewing my license; I guess I

am not ready to give that up yet. Overall, I am retired but doing a little

volunteer work.

Dan

[Guest guest]

I have CMT and I am an R.N.

Holly