Re: Some questions

September 3, 2003

Jean,

After I was diagnosed with diabetes I had considerable

problems with leg swelling and pain as a result. This turned out

to be edema, which can be a common occurance for people with

diabetes. The same goes for the vision. The higher the blood

glucose readings, the more distortion there is, and problems

with short distance vision occurs. Also vision becomes distorted

with blood glucose that is dangerously low. These were never

problems when I just had CP, they developed as the onset of

diabetes began.

Has had her blood glucose (blood sugar) tested?

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments and advice are personal opinion only, and

should not be substituted for professional medical consultation.

" What lies behind us and what lies before us are tiny matters

compared to what lies within us. " - Ralph Waldo Emerson

Jean wrote:

> Do any of you have a problem with swelling and legs hurting

badly?

Do any of you have problems with your vision?

January 25, 2006

Welcome to the group. My name is and I am 21 yrs old. I've been

affected with a mitochondrial disease since the age of 15 yrs. I too have a lot

of shortness of breath. I just recently saw a new pulmonologist who ran many

tests and ruled out every possible lung defect/disease that could be causing

the trouble. He feels like I have a restrictive ventilatory defect just due to

muscle weakness and fatigue from my disease. He didn't have anything to

suggest for me to do for the sob. I do however, have heart failure so some of my

sob is from that but my cardiologist doesn't believe is the main cause. Sorry

I can't be of any help, but I do relate with the symptoms that you are

experiencing. Good luck to you and feel free to post your questions here.

January 25, 2006

Welcome to the group. I am sorry for the reasons you have to be here,

but know you will find a group of caring people. My name is a and

I am 29. I was diagnosed with mito at age 18. I have a lot of shortness

of breath. My lungs are clear, but my pulmonologist does say that I have

restricted lung disorder due to weakness in respiratory muscles. I have

to do PFT's, or Pulmonary Function Tests, at least once a year to see

what my lung capacity is at. I currently had them done and they are

around 50-65% of what they " should " be. I get short of breath easily,

especially when I am sick. I use a bipap machine at night, which does

help me throughout the day. I am sorry I am not of any more help, but

hopefully someone else will have more suggestions. Please know you are

not alone in this.

Smiles,

a

On Wed, 25 Jan 2006 16:56:45 -0000 " issnowwhite54 "

issnowwhite54@...> writes:

Hi, I just joined your group. I received your welcome letter and

responded. I would like to know if anyone can answer some questions?

Is this where I would go and ask them? One of my questions is about

breathing. Any suggestions. My doctors say, my lungs are clear and my

heart is not causing this shortness of breath. But upon reading some

sites about this mito disease it affects breathing. I feel short of

breath upon any type of exertion. I have not seen my neurologist yet

to discuss this disease. We just got back the biopsy and blood work to

determine this is what I have. I also have trouble getting around when

walking, between the breathing and the stiffness and hurting muscles,

even pushing the shopping cart kills me. Any ideas?

January 26, 2006

I too get shortness of breath from even mild exertion. Over some time, I've

learned a lot about managing this, but this applies to ME and might (in many

cases, clearly doesn't) apply to others here.

Anyway, for me, one point is that a SUDDEN change from sitting at rest to

jumping up and doing something exertional is most likely to trigger sob and

other bad things. I think this is sort of like flooring the gas pedal on an

older car, it sometimes causes a stall. Another point is that the better rested

I am beforehand, the better I'll do. Also, just after meals is not good. I think

this has to do with blood and hence nutrition being " already spoken for " by

digestion. Finally, the strangest point, is that if I start out slowly and go on

a good while (maybe struggling, but not too much) I eventually reach a " second

wind " where I can continue, even accelerate a little bit, for a very long time

afterwards without much difficulty. And not only that, but I will feel oddly OK

in a general sort of way, like mood. When I get into this second wind, I'm

rather warm and have to remove hat and gloves outdoors, for instance, even when

they were needed just prior to that.

Aside from the various systemic causes that other people here know more about,

here's my simple take on ONE underlying cause: Muscle uses energy, and upon

exertion doesn't get enough due to poor mito function. Because this feeling is

usually caused by not getting enough air, the body is tricked into breathing

harder (or feeling like needing to, at least) even if that's not what will help.

I've noticed that when I've collapsed (just about passed out), which I don't do

much these days because I know how to avoid it, that I get this strange feeling

of wanting to take a HUGE breath but can't. But I can't place just why I can't

take that breath. Like I'm drowning, even in the midst of air. So I take these

really short shallow panting breaths, all the while feeling like any of them

could be my last.

I'd be really interested to hear from others, any specifics like mine above.

Steve D.

Some questions