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-   -   MG and more problems...... (https://www.neurotalk.org/myasthenia-gravis/83007-mg.html)

erinhermes 04-01-2009 02:23 PM

MG and more problems......
 
Hello all! Turns out that a lot of people with MG also have very high platelet counts - like a heart attack waiting to happen.....

My count is @ 415 right now - my neuro said anything over 500 is when to get worried.......I am 34 - turning 35 on Friday and am NOT ready for a heart attack anytime soon!

Has anyone else heard of the two being connected?

:hug:Erin:hug:

Curious 04-01-2009 02:38 PM

Could it be a side effect of some of the meds you have to take Erin?

MrsD can probably help you slueth that out if it's the case.

What are you supposed to do to lower the platelet count?

:hug:

mrsD 04-01-2009 03:22 PM

Here is an article to explain it :

http://merck.com/mmhe/sec14/ch178/ch178d.html

The reverse --low platelets is more common IMO from what I have seen over the years.

erinhermes 04-01-2009 04:09 PM

Wow! THat was wild!
 
I DO have cold feet and hands all the time - along with tingling, headaches and have been suffering from nose bleeds lately - big nosebleeds........

This has all up so suddenly that I can't explain it..........I used to have a super high iron count - hemochromotsis gene? - then was so anemic I needed a blood transfusion....

My dad had a horrible stroke 5 yrs ago that really affected his brain..........still suffers from it due to proper medical care:(

My sis also has a blood disorder......

I have has test after test to figure out why my blood is so wonky, cuz' now when they have to do the plasma exchange, they have to really work through all the scar tissue in my jugular - not fun..........

I am a bit scared............but know it will get better. My neuro suggested baby aspirin........do you know of anything else I can do?

:hug:Erin:hug:
Quote:

Originally Posted by mrsD (Post 489721)
Here is an article to explain it :

http://merck.com/mmhe/sec14/ch178/ch178d.html

The reverse --low platelets is more common IMO from what I have seen over the years.


AnnieB3 04-01-2009 05:38 PM

Erin, Please don't be scared. What was the range of normal for the lab who ran the platelet count?

Doctors look for other things than absolute platelet numbers. Have you spoken to your internist about your concerns? If you are really concerned, you can ask your internist to refer you to a hematologist. They are the ones who can tell you if it's a normal response to prednisone or some other drug or if there is something to worry about.

Since strokes do run in your family (was he a smoker?), then a hematologist can also do clotting tests like antiphospholipid syndrome that people with autoimmune diseases sometimes get. I'm sorry your Dad had a stroke. My Grandfather did, so I understand the worry. Has anyone actually looked at your platelets, red blood cells, white blood cells (peripheral blood smear)?

Hematologists can be very reassuring. And they can easily find anything odd that might be going on. That would be my best advice.

Here, read this:

http://www.mayoclinic.com/health/thr...SECTION=causes

Mrs. D. gave you the "scary" article. ;) I have had my platelets higher than normal a couple of times. Sometimes it's not a myeloproliferative disorder at all. You need more testing done to be sure what's going on.

Also, if you are worried about your heart, ask your primary doc for an ECG and maybe an echocardiogram (referral to a cardiologist). That way they can see if you have any risk factors or if your heart is okay.

Taking an aspirin would make any bleeding you are having worse. Don't take anything without figuring out what is going on first!!! It could make it worse and you don't want that.

In the meantime, try not to worry. Just get a good doctor to help you, okay? And maybe someone needs to explain all the lovely side effects of Prednisone to you better!!! ;) Did you ever get your blood sugar checked?

Hang in there.

Annie

erinhermes 04-01-2009 08:35 PM

Hi Annie!
 
HEy there! I did have my hema check my platelet count and he didn't seem to concerned about it - thank goodness! I have my blood drawn every 2 weeks sonce I started on Imuran - just to make sure.....It is funny b/c I used to be so afraid, but am getting used to it......

They did check my blood sugar and it was "well within normal range" - my neuro thinks that my high dose of pred is what is casuing the shakes and reduced it to 40 mgs today - yay! Terrible stuff, prednisone!

I also talked to him about my weight gain (25 lbs so far) - he (neuro) said that it is low overall - doesn't feel that way to me! LOL

How are you? Are you OK?

:hug:Erin:hug:
Quote:

Originally Posted by AnnieB3 (Post 489802)
Erin, Please don't be scared. What was the range of normal for the lab who ran the platelet count?

Doctors look for other things than absolute platelet numbers. Have you spoken to your internist about your concerns? If you are really concerned, you can ask your internist to refer you to a hematologist. They are the ones who can tell you if it's a normal response to prednisone or some other drug or if there is something to worry about.

Since strokes do run in your family (was he a smoker?), then a hematologist can also do clotting tests like antiphospholipid syndrome that people with autoimmune diseases sometimes get. I'm sorry your Dad had a stroke. My Grandfather did, so I understand the worry. Has anyone actually looked at your platelets, red blood cells, white blood cells (peripheral blood smear)?

Hematologists can be very reassuring. And they can easily find anything odd that might be going on. That would be my best advice.

Here, read this:

http://www.mayoclinic.com/health/thr...SECTION=causes

Mrs. D. gave you the "scary" article. ;) I have had my platelets higher than normal a couple of times. Sometimes it's not a myeloproliferative disorder at all. You need more testing done to be sure what's going on.

Also, if you are worried about your heart, ask your primary doc for an ECG and maybe an echocardiogram (referral to a cardiologist). That way they can see if you have any risk factors or if your heart is okay.

Taking an aspirin would make any bleeding you are having worse. Don't take anything without figuring out what is going on first!!! It could make it worse and you don't want that.

In the meantime, try not to worry. Just get a good doctor to help you, okay? And maybe someone needs to explain all the lovely side effects of Prednisone to you better!!! ;) Did you ever get your blood sugar checked?

Hang in there.

Annie


hcmiller92 04-02-2009 06:54 PM

Erin -

Stop having blood tests. They'll drive you nuts and nothing will change.

Curt

Quote:

Originally Posted by erinhermes (Post 489691)
Hello all! Turns out that a lot of people with MG also have very high platelet counts - like a heart attack waiting to happen.....

My count is @ 415 right now - my neuro said anything over 500 is when to get worried.......I am 34 - turning 35 on Friday and am NOT ready for a heart attack anytime soon!

Has anyone else heard of the two being connected?

:hug:Erin:hug:



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