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...and Back To The Drawing Board


Rachel Cox
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I had a chest CT yesterday. My doctor was looking to eliminate thymoma as a possible cause for my pandysautonomia. I have had worsening coordination and muscle weakness too, so I also had bloods done. Apparently, both are normal, so we are back to the drawing board. Am I crazy to be looking for cause so incessantly? At what point does one give up?

...sigh...

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I'm very sorry Giraffe, it's so tough to get answers.

I stopped chasing doctors when I realized that it took all my energy, caused a lot of frustration and I missed out on about a year of my kids lives. As it didn't lead me anywhere I decided to stop finding answers and try to live my life to the fullest enjoying my family. There was so little energy I thought I'd better spend it on them. So I waited till they were older and then started up finding answers again. It did help that science had taken some steps in the mean time so I found some answers, and am doing better than before. Not that I'm cured or anything, there are lots of problems but I am able go out and about on a regular base which is a huge step for me!!! Sending you wisdom!

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I'm sorry and I know. I keep asking myself the same question - keep looking for answers or stop the madness and try to learn to accept this? I've personally been going in circles for years. It's just really hard to stop looking, especially when you feel yourself getting worse over time. I think as long as we still have some fight left in us, we should keep trying, but when the search itself begins to suck the life out of us, then maybe it is wise take a break and come back to it later.

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Sorry, giraffe, it's always such a let down when normal comes back!!! Isn't pandy's a diagnosis that has a treatment plan on it's own, why do you need to keep looking for cause in order to treat. We have had several pandy's patient's on here over the years and they were getting treatments like pheresis and ivig, and improving with them.

Another condition to consider is cidp another type of neuropathy. All of the neuromuscular diseases mentioned are treated in similar manners. MS, has some newer choices.

I've given up and then been forced to deal when things got worse. Exhausting, Yes!! Doing nothing though and hoping it will go away are usually just wishful thinking. Stay strong, you will get your answers if you don't give up.

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Sorry, giraffe, it's always such a let down when normal comes back!!! Isn't pandy's a diagnosis that has a treatment plan on it's own, why do you need to keep looking for cause in order to treat. We have had several pandy's patient's on here over the years and they were getting treatments like pheresis and ivig, and improving with them.

hiya, thanks for your responses girls. So nice to have you on here, so encouraging and emapthetic!

...apparently ivig is only useful if the onset is acute... because I've had symptoms since I was eleven my doc doesn't think that it will work for me. We haven't discussed plasmaphoresis. Still waiting for my results from some mayo blood screening tests. I am worried that not having a clear answer will put my lovely doctor off and he will lose interest in me. Gah!

I will research the other things, you clever ones! thanks for giving me avenues to look into!

After feeling so down yesterday I am now feeling more positive. Onward McDuff!

I'll be offline for a few weeks, so Merry Christmas everyone!

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