Question regarding breathing phrenic nerve..I think I might have please advise

[Guest guest]

Hello

Would someone who has had a loved one or themselves have breathing or

swallowing problems please contact me.

I am very frightened as I am having symptoms of this type.

Tammy

[Guest guest]

Hi Tammy,

I have swallowing problems, it goes along with the kind of disease I have, all

of us with ataxia have swallowing problems. I would like to pass on a tip which

I found. I can drink from a plastic bottle, without choking. I also had

breathing problems, but only when I had been sleeping. I hope this helps. My

problems are all connected to the ataxia, just another symptom to live with.

Kenny/SCA3/63/Mo

[Guest guest]

Hi Tammy,

I'm really sorry to hear you are having breathing problems but I understand

what you are going through. I was diagnosed with CMT 1A in 2001 but have had

breathing problems for as long as I can remember. My breathing has always

been noisy and a little exertion leaves me gasping for air. My doctor has

been treating me for asthma since I was in my teens, I returned on several

occassions as the pumps had little or no effect. He kindly told me to lose

weight to which I replied it's difficult to lose weight when I can't even

climb stairs without gasping for air, I then scurried out the room in floods

of tears. To cut a long story short in August I was diagnosed with bi

lateral vocal cord paralysis which they think may be related to CMT. This

means that the vocal cords do not move when I try and inhale so I am trying

to breathe through a small hole. I often have a feeling that my throat is

closing up and I really struggle to breathe. I am going back to the London

hospital in December to see where I go from here.

I really hope you get help with your problems, feel free to e-mail me if I

can help at all.

Take care