I NEED HELP!
Is there a doctor out there who can give me any information about this disease. Including theories of what may have caused the initial benign right side atrial myxoma that caused the stroke in the first place. It seems that the piece of myxoma tumor is causing my brain cells to behave like tumor cells. I’ve already had some cells cause a ruptured blood vessel.
The link below is the best information I could find. Understanding the rarity of reported cases (from the first case in 1966 until 2013 only 50 cases were reported ) I’m not expecting a cure or even a treatment. But if you happen to be researching anything similar , I’m happy to help by talking about the things that are medically unusual about my body. My neurologist is reaching out to other doctors even in different specialties. But rather than sitting back and waiting for him to save me, I need to feel like I’m doing something to help.
Yes, I am one of those horrible patients who thinks she can help, but in this case I can. Let’s help each other. I CAN HELP!
Well, then, let’s put the word out …
I’ll reblog and see what we can do
Thank you so much!
Reblogged this on A Tale Unfolds and commented:
Calling ALL doctors or anyone out there who may know a doctor who might like to throw some thoughts into the pot.
This is important.
Reblogged this on Just me being curious and commented:
“I CAN HELP!”
Read this short post, and then the last three words: I can help.
Can you – or anyone you know – help?
Thank you..
Its been just under 3 years since I had the stroke.
I started getting small headaches behind my right eye 6 months ago
I went to my family doctor to get my brain and heart scanned for the first time since leaving the hospital she set up both scans
My heart was scanned via echocardiogram but because of the patch on my heart we couldn’t see the right atria
Brain scan came next and there was evidence of a recent bleed and I was immediately admitted to the ER
If you go to the March posts you’ll see what doctors told me then.
Post is titled Apparently it’s good news
I’m a 53 (next month )year old female
I smoked cigarettes for 33 years at a rate of 1 package per day I quit smoking in 2011.
I smoked marijuana frequently, starting when I was 16. Daily use for the majority of my life
Now I smoke half a joint daily and take up to 80mg daily via capsules for chronic pain.
I’m also taking 2-3 pills a day of flexoril a muscle relaxer, to combat my left arm paralysis. And it’s working. I can actually relax my arm.
I have over 100 dark moles or lesions on my body.
I have a dark brown blotch in my right eye that has been there since birth .
I have had multiple breast and ovarian cysts. Two of which were infected. Beginning when I was 26 and as I type this I have 2 in my right breast and 1 on my left ovary.
My atrial myxoma tumor measured 4x7cm and was fully removed in September 2015.
Stroke was in Aug 2015 right brain, massive stroke, caused by right side atrial myxoma tumor