Hey there! How are you? Are you OK? It sounds like you have been through hell and back with MG........I am so sorry to hear that!
I see a hema every 2 weeks - my blood has always been a little "off" - no idea why! I have also had every test known to man EXCEPT for the stress test (thankfully) - I have (they say) a great circulatory system, great vascular system, etc, but I do have the hemachromatosis GENE - whereas my sis has the opposite problem (can't remember the name of it right now - brain fart)........
MY main concern is that when all of this crap started, it started with wicked headaches and nosebleeds......after my ill fated trip out of the country......it was awful, to put it mildly.....that was right b/4 my first real crisis......
I see my neuro in a few days - thankfully he will have them run the gamut on me - every time I have a new problem they test me for EVERYTHING - in that respect I am very, very lucky b/c he does listen! AMEN for that!
I do know that I have terrible sinus problems and every dr has told me I need to have them drained in order to feel better- I am just a little gun shy after my last surgery and I hate the hospital so much! It still scares me even though I am there every month for more IV IG.......You see, I grew up in the hospital.....my Gram was always very ill, so we were there all the time.....
Thank you for letting me vent! I will ask Dr. I about all this new crap and get alll of my testing done within the next couple of days!
If you DO want to talk about what has been going on, please email me @
erinhermes@hotmail.com..........
Big, big hugs!
Erin
Quote:
Originally Posted by AnnieB3
Erin, If you don't mind, I'm going to get a little serious here.
Your above normal platelet count, headaches and nosebleeds may only be a side effect of the drugs you are on. But when it comes to health issues, NEVER assume anything when it comes to new symptoms.
Have you gone to a hematologist to talk to them about this? If not, then go. They are the doctors to test you for any clotting issues like APS, Factor V Leiden, etc. And they can run a pro-time/INR too!!!
Have you been evaluated for cardiac or circulatory issues? Had an ECG or echocardiogram? Stress test (though they can be problematic for MGers)?
I just had a situation come up where I had been going to doctors for over four years to try to figure out why my body's fluid system is off (to put it mildly) and why I have hypertension when I never did before. They kept running tests and saying things were fine. One thing lead to another and I did more digging. I found out last week that something serious is going on and these bastards did not take it seriously enough. No, I don't want to go into details - it's too upsetting. The doctors did not ask enough questions but, thankfully, I did. If I hadn't, I don't know how bad this situation would've gotten.
My point is that if you think there is something wrong with your health, do whatever it takes to figure it out and SOON. If you are satisfied with doctors saying it's related to the drugs you are on and you should just keep an eye on things with blood tests every few months, then great. If not, then you should pursue a differential diagnosis.
There are specific reasons why people have strokes and a neurologist who specializes in that would be the one to see to explain it. Probably not your regular neurologist. If you would feel better having a carotid ultrasound or a brain MRI or any other test to classify your risk for strokes because of your Dad, then do that.
There are things you can do, like taking CoQ10 (after you talk to a doctor) that can help with reducing that risk. And refer to Mrs. D's suggestions in your other post. When you're on drugs, it's often necessary to take supplements in order to counteract their effects (i.e., calcium/Vitamin D while on Pred).
Just don't sit around fretting over something; it doesn't do any good.  Get someone to figure it all out for you so that you can forget about it and just enjoy an existence that is as health crap-free as you can!
Annie |