What were the symptoms that you had before you started using respiratory support?

[Guest guest]

Hi All,

I have a question mainly to the adults with SMA type II on this list. Those of

you who are currently using a Bi-Pap or some other form of respirator.

What were the symptoms that you had before you started using respiratory

support?

I am always tired. It seems I never sleep well. There are days when I am a

little better and more alert, other days when I'm more sleepy. But I never feel

like I've really had a good night's sleep.

I had a sleep study done some weeks ago and it did not show any serious

problems. The doctor said everything is fine, she showed me the curves that had

no drops etc.

I work full time so there is a limit as to how many hours I can sleep on

weekdays but 9 hours does not seem to be enough anymore.

My vital capacity is extremely low - some 25 per cent of what it should be for a

person of my age and size. But it has been like that for decades. I have only

been tired like this for the past 2-3 years. So for a long time I've managed

very well with an extremely low vital capacity.

I don't have any of the other classical symptoms of poor ventilation (morning

headaches etc.) I don't have nightmares or wake up in the middle of night

gasping for breath. I haven't had recurrent pneumonias or anything.

Sometimes I have a pain on my side which I think is due to too much carbon

dioxide in my lungs. It is relieved when I concentrate on taking deep breaths

for a while. I once mentioned this to one doctor but she dismissed it: " it is

your scoliosis and bad sitting posture... " Obviously it is not a symptom

mentioned in textbooks.

What were your symptoms? How did you know it was time to do something about it?

Help me determine whether it is time to seek some more help. Or shall I just

wait it out?

clueless

-Taya

from Finland

[ROSKAPOSTI] Re: Chiropractor and SMA

My son is a type 2. He is four years old, and has been going to a

Chiropractor for 2 years. He had a a slight curve that has gotten

better, he has also increased his respritory fuction with adjustments.

Our whole family goes. It is very benificial, for our experience. I

have scoliosis myself. and I know without regular adjustments I am

miserable. I highly recomend Chiropractic, but as with any doctor, you

have to make sure you have a good one. A plus, your Chiropracter can

adjust you for many things, like immunity, allergy, carpal tunnel,

headaches,migranes, and so much more! I hope that helps.

>

> How can a chiropractor help someone who has SMA and because of that a

scoliosis and other contractures? That sounds very scary to me.

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