Pains in chest: My 15 year old... - Charcot-Marie-Too...

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Pains in chest

davidkaz profile image
9 Replies

My 15 year old granddaughter has cmt but has started to suffer with pains in her chest, anxiety was mentioned but another doctor said it could be part of the cmt affecting the muscles in her chest. Has anyone else heard of this or suffered with pains in their chest

Thanks

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davidkaz profile image
davidkaz
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9 Replies
John1945 profile image
John1945

Hello to davidkaz .....

I am most seriously concerned that your G.P.(s) did not immediately send you, and your grand-daughter to the nearest Hospital with A & E Services :

A & E would have ordered an immediate Electrocardiogram (E.C.G.) chest, and painless scan, to rule out any possibility of any 'past' ?, or 'current' ? cardiology events :

My local Bothwell Medical Centre, which is entirely staffed by GP's, and Practice Nurses etc : When you phone the Medical Centre, the usual range of 5No. options is played to all callers : However, Option No.1 is "if-you-have-chest-pain-press 1:

That call is then immediately re-directed, answered in person by a Doctor, and (not a receptionist) who will discuss, and advise you what to do :

18 months ago, I was aware that I was suffering moderate chest pain, but like most people, I was silly, as I did not want to "bother" my G.P. as my chest pain, would soon go away, how wrong was I :

When I phoned my Medical Centre, and selected Option 1: Immediately a G.P. responded, after I descibed my symptoms, he informed me to expect an ambulance in the next 30 minutes, to take me to A & E : Here they discovered I was indeed suffering the pains of "angina" (oxygen deprivation in the heart muscle) :

Later that day I had an "Angiogram", which revealed that 2No. Arteries in my chest were approaching a total blockage, which would/could have been fatal :

Next day, I was wheeled into "Catherisation-Laboratory", the Cardiologist then entered an artery in my wrist, and I was privelged to view him on the 'monitor' clearing the "Arterial-Plaque-Blockage" followed by the insertion of a drug eluding "V" stent :

Discharged, at 6.30pm that day, and was home in time to watch "Corrie" :

Please carefully review/revisit your grand-daughters symptoms, and seek medical confirmation that her chest pains, are not in anyway related, to any cardiology events :

Yes ! Cmt does effect muscles, and yes, they will most certainly continue to waste, and weaken :

However, Cmt is "USUALLY" ? caused by the sufferers muscles not receiving a "strong-wave-electrical-pulse" signal strength to and from their brain :

This signal is much reduced in strength/velocity/ speed, is transmitted by the "peripheral nervous system", which is damaged :

The wax like sheathing, called "Myelin" is damaged, and "leaks" ?

Myelin wraps around these defective, and damaged, 'Sensory-Nerves' >(touch/feelings /information) 'TO' the brain :

'Motor-Nerves' >(command/signals/instructions) 'FROM' the brain, via their damaged "peripheral-nerves" :

Please keep us all Cmt'rs on the "Health-Unlocked" website, updated, and advise us of the final outcome :

Best of luck.....

John (Glasgow) .....

spabbygirl profile image
spabbygirl in reply to John1945

Gosh John what a story! Its a good lesson to us all & I'm glad you're still here to tell it. I have CMT type 1a and was diagnosed 30 yrs ago when dr's said it only affects the long nerves. I had inflammation of my optic nerve in my eye five years ago and my neurologist said it couldn't possibly be linked to CMT. That dr retired and a new one took his place who said my eye condition was due to CMT and it can be associated with cognitive decline. I think there's a lot they're still learning about CMT.

gunner profile image
gunner in reply to spabbygirl

HI,I DO HAVE EYE ISSUES I.E FLOATERS EYE PRESSURE/PAIN BEHIND THE EYE AND BLURRING OCCASIONALLY , AND MY EYES ARE VERY SENSATIVE TO LIGHT. EVEN THO' I WENT FOR EYE TEST NOT SO LONG AGO AND THE RESULT WAS I HAD GREAT SIGHT. I DID TELL THEM ABOUT MY ILLNESS SO THEY WILL KEEP AN EYE ON IT PARDON THE PUN. I MAKE SURE TO USE DROPS WHEN THEY FEEL DRY AND TIRED.

kitbo21 profile image
kitbo21

I have breathing issues but no pain I also have anxiety and panic attacks... I agree to what john says, good luck x

davidkaz profile image
davidkaz

Thank you for your reply, my granddaughter has had tests etc but all came back ok which is why I wondered about the CMT as the more I read about the condition I realise that there are lots of different symptoms.

John1945 profile image
John1945 in reply to davidkaz

Hello again to davidkaz.....

Can you tell us exactly what test(s) weré done on your grand-daughter ? Did they all totally rule out, any possibility that she has had an existing, or a recent cardiology event ?

Over the last few years, many sufferer's of Cmt have suggested that this "Neurological-Disease" can cause them pain, and discomfort, in different parts of their bodies :

It is a medical fact, that no two Cmt sufferer's have the exact same symptoms, and each case has different physical outcomes :

For many years all Cmt sufferer's were told, > > > > and always remember, "who are we to disagree with a doctor" ? ? ?

We were advised that ? ? ?

1) Cmt only effects your peripheral (longest) nerves, that are positioned, and terminate just below your skins surface: These nerves conduct the electrical "wave-pulse" signals that are constantly, going "To & From" your brain, and your extremities, plus your lower limbs + hand muscles :

2) We were always "firmly" told, that any Cmt sufferer's 'MUST' have "inherited" this neurological disease from a parent :

Now their advice appears to have changed ? ? ?

Last year our Neurologists have now created a "new-type" of Cmt, which is due to, and is called a "Spontaneous" mutation where, if they cannot prove, or find a definate scientific/medical 'link' for their patient having Cmt, they now classify it as being 'spontaneous ? (check-dictionary) ?

I personally believe that Cmt is responsible for many other medical conditions, or 'side-effects' such as > > > >

a) Sleep Apnoea, (snoring etc) due to weak throat muscles :

b) Diaphram, (a chest muscle) can cause breathing problems :

c) "Clawing-fingers", and total loss of your hands, "fine-finger-dexterity" :

e) Depression, + Anxiety, are common side efects from having Cmt :

f) Yes, Cmt as neurological disease on its own is "painless", however this then in turn, causes sufferer's to have > > > >

>Balance issues / Muscle pain / Joint pain / Walking issues / Fatigue :

>Muscle wasting / Pes Cavus (high arches) / High Walking Gait etc-etc :

Health Unlocked's website provides an excellent means of getting, and sharing more information about Cmt, from your fellow sufferer's :

You must not let this 'progressively-worsening', neurological disease beat you ! and in particular, 'YOU & YOU' alone must accept, and manage the medical hand that God has "dealt you" ?

Every day, I tell Cmt you can just "p - ss-off", as you certainly "ain't gonna beat me" :

Best of luck to all !

John..... (Glasgow)

lowther1 profile image
lowther1

I myself had chest pains and breathing problems, my gp investigated my heart but all fine. So that was that, but the symptoms were still there. Saw a different doc, he sent me for a scan, which revealed a partially paralysed diaphragm. Although not a lot can be done i know what the problem is. But then my doc put everything i had down to cmt. So have changed docs.!

gunner profile image
gunner

this seems to be a well none complication with cmt not sure what it means or what they can do about it, but I think it effects me in some way. the trouble with cmt is it gives you so many probs but you have deal with them one by one which can take a long time.

Kenwa profile image
Kenwa

Hello I have CMT and have had periodic chest pain, with no clear explanation. I have wondered if it is CMT related.

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