Jump to content
RemedySpot.com

Breathing Issues

Rate this topic


Guest guest

Recommended Posts

Hello Everyone,

 

Because of the deterioration of the peripheral nerves around my sister's phrenic

nerve, which were causing deteriorating of her diaphragm... my sister ended up

in ICU from CMT-1A, in 1995.  She was put on a trach for 9 years.  In 2004 my

sister died from CMT, at the age of 56 without any secondary conditions.

In 1995 I was diagnosed with the deterioration of the peripheral nerves around

my phrenic nerve, which was deteriorating my diaphragm. Once they found out I

also had the same problems, as my sister, they put me on a bi-pap to hopefully

slow down the progression of my phrenic nerves, and diaphragm nerves from

deteriorating. 

In 1996 and 2004 I went to a sleep lab to change my bi-pap settings.  Between

1996 and 2010 I did not get the help I needed from my Pulmonary Dr.  Each time I

asked for help he told me to raise the head of my bed.

My symptoms were: I couldn't lie down without feeling like I was suffocating, I

would awaken in the night with a panting type breathe, heart palpitations,

tremors, my body was deteriorating at a much quicker pace, This had been

progressively getting worse for about 4 years.

 

I saw a new doctor a few weeks ago. She had me do a sleep lab ASAP.  The night

my new settings were changed to my V-pap most of my breathing problems

disappeared.  Thank God for my new doctor!

During the past year and a half I have gone through breast cancer, extreme

atrophy, and a blood clot all which could have been triggered from low oxygen

levels and CO2 poisoning.

 

I know of 4 other people passing away from CMT because of the deterioration of

the peripheral nerves around their phrenic nerve, which deteriorated their

diaphragm and dying without any secondary conditions.

More than ever I know the importance of getting a good doctor.I've seen in our

family how easy it is to believe a doctor who says there is nothing they can

do.  I believe and seen that sometimes the family becomes desensitized to the

problems with CMT and they don't really realize what is going on.

If anyone has any suggestions please feel free to email me at

ilovewater333@... Prayers are great too! -)

 

Kay on The Beautiful Oregon Coast ;-)

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...