Breathing Problems

[Guest guest]

Hi Gretchen,

Thanks for your reply, today is the big day, I am off to St '

hospital in London for a sleep study and further tests (unable to

sleep as I am so nervous so I thought I would have another look at your

excellent web site) Fingers crossed they may have some answers for me,

I will let you know how I get on. I have always been led to believe

that breathing problems are extremely rare so it has helped to find

out that the problems may be connected.

Thanks again for your help,

[Guest guest]

Hi Gretchen,

I have recently attended St ' hospital in London regarding my

breathing problems which I believe are related to CMT. They did

several tests and have ruled out sleep apnea but have stated the

problem appears to be when I inhale, this has led them to believe I

may have paralysis of the vocal cords. I have another appt for the

24th August when they will be checking the vocal cords using a camera.

Are there any other members that have been diagnosed with this and if

so do you know if there is anything they can do for the problem?

I would be very grateful for any information.

Many thanks

.

[Guest guest]

Hi ,

I'm sure you'll hear from other members about this. Here is a link from

the former CMTI that may give you some info

http://lindacrabtree.com/cmtnews/breathing/breathingsubtitles.html

On the HNF site, Wheeler wrote a great article titled " CMT - For

Some A Breath Taking Reality " (March 9, 2004) Let me know if you're not

a member and I can try to get you a copy of article. There may be a

few more articles there of interest as well.

Wonder if you've contact or Annette at the CMT UK Headquarter for

some info on treatment there as well?

~ Gretchen

[Guest guest]

Hi ,

I am glad at least you have resolution and know what the issue is - I just wish

it were not seeming so severe!

Getting a breathing machine while you sleep will not be such a bad thing. A

great friend of mine has one for sleep apnea. I think it is a bit of a pain for

her and husband sometimes (harder to cuddle but they are now used to " spooning " )

but she told me that without it she just feels tired all the time. I think they

really improve the quality of life.

Let me know if you get an appointment with R. I need to make my neuro

appointment. It is on the long list of things to do. That list always grows -

there just is not enough time in the day!

Tell them you need to see Dr Hart as it is urgent and that you are a

critical care patient. This should help. Although we are classed as a Chronic

Condition which I think means that we do not get as responsive care as we can,

explain that you need a 10 minute consultation about treatment options as you

have a serious condition and a paralysis in your vocal cords impeding your

breathing. They usually can squeeze patients in. Explain it is not a long

diagnostic session just that you need to seek advice on whether or not various

treatment options might lead to further damage as you

have had conflicting advice. Also explain that you are still waiting for the

referral appointment to Reilly and have not received either the appointment

letter or a follow up on this either. They should be responsive I hope, let me

know how it goes. I know a lot of energy can go into getting appointments, but

don't give up and don't lose heart. There are some really great doctors around!

Good luck with the builders - and take extra care with the dust around. I found

with my place that the dust invaded everything. We even kept stuff in boxes

until they left to minimise this, and we still find it in our things!

Donna from London

[Guest guest]

Hi Donna,

Thanks for your reply. I suppose I have lived with these problems for such a

long time I tend to just get on with it. It just hit me hard when the doctor

said it can be life threatening and I need to go to hospital if I catch a cold

and have difficulty in breathing.

I can't wait to try the breathing machine, as you say it's not going to be very

nice but at least I may have some energy....and fewer headaches!! My husband is

very understanding most of the time but I think he does worry when I am

struggling to breathe but he tries not to show it.

I know the feeling about the list growing longer, we have just re-mortgaged but

I am having trouble with the life assurance. I always seem to be on the phone

for one reason or the other.

I'm glad your building work as finished, hopefully ours will be finished by

Christmas. Then it will be on to the decorating.

I have another appt with the speech therapist next thursday and she did try and

contact Dr Hart to bring the appt forward. I will let you know how I get on.

Thanks again and take care,