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Back from Mayo already-- very bummed!


DawnA

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Guest tearose

Dawn, thank you for all the information and suggestions. I have all those links to read through now too!

I understand how you need a break from this for a bit! It becomes a job and can consume so much time and energy.

If you can answer one question...How will you deal differently with your treatment plan if you are finally dx as having a mito disorder? I'm wondering if you are already doing all you can or will having this dx also offer you the opportunity to try another treatment.

Again, as a side note, my father developed lewy bodies dementia and a parkinson like syndrome when he reached his late 60's. He lived to 72. I wonder if he had any of these mito symptoms and we did not notice them in him. We certainly saw the problems of dysautonomia. It is still a puzzle but I suggest we all keep searching for the pieces...

best regards, tearose

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Tearose, You are always welcome to ask me questions. I do not need a break from talking about mito...I am very convinced that I have it. I just need a break from Drs and dx testing.

I once posted on the mitoldies forum on what are the benifits of having a diagnosis of mito since their is not much treatment and I could take the mitochondrial cocktail without a diagnosis. what are the benifits of being diagnosed? I received a lot of answers and I became convinced that I needed to pursue my dx farther. I wish I would have written down the information. Here are some of my thoughts:

When you have a mito dx a Dr is going to take your complaints more seriously. Also you are routinely screened for things such as cardiomyopathy, diabetes....

When a mito patient is ill their is treatment protocol and specific labs that need to be tested. Most hospital do not do these labs. THis treatment could save your life or furthur progression. I know of people who have died in a metabolic crisis, because they were not dx. It was their family member who became dx at a later date. These are the only changes in treatment I can think of right now.

If I knew that I had mito, I would give my children the mito cocktail. I could have them take it now, but it is very expensive and they are not much for taking pills. However, if I find the cocktail helps me a lot, I will give it to them anyways. I am concerned about my daughters having chilren. Mito is maternally inherited...meaning mothers pass it down to their children. (by the way you can not get mito from your father) The mutation could get worse and I worry about my grandchildren having a severe form of childhood mito which is fatal.

I like answers and to research for them. I am very persistant, because I always like to understand why. This is where my faith needs to come in and I need to give it to God because my persistance becomes to much.

Being told that your illness is psychological makes you want to prove that wrong. I have a bizarre gait which was diagnosed as a conversion diorder. I did prove this wrong with a abnormal EMG and muscle biopsy.....but they are still perplexed on why I walk like this. However some days I can walk very well????

As more people become dx with mito the better it will be for future generations with mito. Mito is a very specialized complicated field and their are few Drs who know how to treat it. More Drs need training, more research needs to be done and we need more treatment options.

Pursuing a mito dx can be a long road. The pros and cons definitely need to be weighed. Having the lab tests and the skin biopsy should definitely be done if mito is suspected, but going beyond that definitely needs to be well thought out. If I was you I would definitely look into the anesthesia precautions for mito patients it may be something you want to follow.

I received my note the geneticist at Mayo clinic. He did not rule mito out for me and diagnosed me with Metabolic disorder, NOS. SO I guess I will tell people that I have a metabolic myopathy, it is nice to have something to say. I hope this information helps you. Don't be fraid to ask me anything...we learn so much from each other and I am always willing to pass the word about mito.

dawn

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Guest tearose

You are so generous dawn, thank you will all you have shared!

I will need time to go through all this information and I will not hesitate asking you more questions!

As horrible as some of the tests was for me out in MN, I was so relieved to see there were "concrete results" on paper that would explain my condition to those doctors who were so unsure...sad isn't it? I hope that this new dx of mito disease in you is recognized as a disease that explains your condition and you no longer must suffer the label of a psychological case!!!

If you do choose do begin on the mito cocktail I hope it is all you need to bring your quality of life back up! ...and may it be a delicious cocktail as well! :)

take care, tearose

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