Re: carnitor question-linda

[Guest guest]

Hi inda,

I was wondering if anyone gave you any inf. on the nosebleed thing? I have been fighting it for several years to no avail. I have had them for years and when I tried a cauterization, it didn't work. I am very curious as to what is the cause of the nosebleeds.

I also have food can chemical sensitivities. I have odd reactions to drugs too {an inhaler made me go blind!}. Fortunately, I got my sight back. L-glutamine made me have violent muscle cramps. Reactions to Rx drugs have been a mainstay for me for years--muscle cramps, diarrhea, muscle pain and on and on.

Has anyone in your family been dx with mito? I had a muscle biopsy, and started reading the articles at http://www.umdf.org/ and that is how I found out that the disease can cause problems anywhere in the body. I finally got diagnosed with mito and my 'odd' symptoms began to make sense. A neurologist would be the one to do that.

I had digestive testing done at Great Smokies. It helped, but nothing really helped until I realized all my symptoms were mito related.

God bless,

Hazelpone

Re: carnitor question

Our family has so many odd symptoms that the medical people just don't know what to do with any of us. And when I try to tell them about "us" or "all of us" or "my family" they get irritated and say they are just talking about the person at hand and want to reiterate that we are each individuals and some genetic family thing is just too much for them to deal with. I read this list as I have for some years and over and over see things that I never even connected with mito but which are problems for some or a lot of us in our family that the Dr.s can't figure out so they just ignore them.

This nosebleed thing is one and so is an anemia that they can't figure out and nothing seems to help. Also the 12 yr old grandson with the nosebleeds now has more leg pain problems and they just attribute that to maybe he strained a muscle playing basketball. He's wearing a knee brace which he says helps some. Now he says maybe he needs arch supports to help his leg pain. Other grandkids say sometimes "they're legs won't walk" but they get better after a few hours. Again, the Dr.s blow it off. We think maybe we've connected it to when they eat high protein like meat the night before.

Has anyone had experiences with having testing done on their hormonal system? Dr. Jonathon in Kent, WA did testing on myself and my 4 kids years ago and told us our hypothalamus glands don't work right causing the full cascade of hormonal hypo's. Thyroid issues are a big problem as are sexual hormones.

Cancers, dementia's, B12 problems, ADD and ADHD, etc. run through my family. Food and chemical sensitivities, odd reactions to drugs (for instance a Clonidine patch almost killed my grandson one day-scared me to death as it knocked him out cold and caused a deep depression, Excedrin Plus made me start to float our of my body and put me into mild convulsions) and one time a series of tests done at the U of TX in Austin designed by Dr. Shive and told us the kids and I all had a block in B2, B3, and biotin and our cells sucked up 4 times the normal amount of calcium. We also needed more oleic acid.

I have had supplements of glutamine (an amino acid) make me go suicidal in an hour.

We've had various sorts of heart issues but they can't track most of them down and for the oldest daughter (31) the meds they give her make her worse. I'm trying to get her to try the CoQ10. The other daughter used the Carnitine and in fact can't really do without it.

The expenses of these items makes it almost impossible for us to pursue.If I could prove a mitochondrial disorder in the family I would fight like # with the insurance companies for coverage!

We are doing a number of tests at Great Smokies Diagnostic Labs. Has anyone else ever heard of or used that lab? We are VERY impressed.

Too tired and going to bed. Just had back surgery for a slipped disc.

Scoggins