[erinhermes]

Hello all! I have been having wicked headaches, followed by nosebleeds recently and am wondering if my "high" plasma count is the culprit......granted it is only 415 right now, but it still scares me, cuz' my dad had a stroke super young (57) and a RARE type of stroke and is STILL suffering..........

Any ideas?

Erin

I am on iron b/c my ferritin level was @ 10 a while back - my body doesn't store iron like it should - how can I can have a high plasma count? I just dont get it! AUGH!!!!!!!

[ras1256]

Hey, Erin. I sent you a PM on this, with a link. Just wanted you to know I saw this and did respond.

Becky

Originally Posted by erinhermes

Hello all! I have been having wicked headaches, followed by nosebleeds recently and am wondering if my "high" plasma count is the culprit......granted it is only 415 right now, but it still scares me, cuz' my dad had a stroke super young (57) and a RARE type of stroke and is STILL suffering..........

Any ideas?

Erin

I am on iron b/c my ferritin level was @ 10 a while back - my body doesn't store iron like it should - how can I can have a high plasma count? I just dont get it! AUGH!!!!!!!

[stayathomemom]

Erin,
Do you mean high platelet count?
I know large amounts of IVIG have raised my platelet count in the past.
SAHM

[Maxwell'sMom]

Hey Erin, I haven't been here in a while, sorry. Been battling some medical stuff myself.
Have you spoke with your doctors about this, and what do they say, and or do?
I Have to give myself ProCrit Injections, and I just finished Iron Infusions. 4 weeks worth. So, make sure your kidneys are okay, it could be them causing the problem.
What meds are you on, as meds can cause kidney damage, and then your iron count can get really low.
I can't remember what my ferritin level was, but that's why I was concerned about your kidneys.
Love Lizzie

[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

[erinhermes]

Yep! My platelet count is above average.....no idea why, but the nurse did tell me that lots of MG'ers have the same condition - her daughter also has MG (@ 17, no less) and is in MED school! Can you imagine?

I have ALWAYS had wonky blood - been seeing a hema for years now..........another nightmare....

Enough about me - how are you? Are you OK? How is your energy level?

Big, big hugs!
Erin

Originally Posted by stayathomemom

Erin,
Do you mean high platelet count?
I know large amounts of IVIG have raised my platelet count in the past.
SAHM

[erinhermes]

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

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

[erinhermes]

IT is soooooooooooooooo great to hear from you! Are you OK?

I have spoken with every dr I have - 5 to be exact - my GP, internist, neuro, hema, and pulm...........

I see my hema every 2 weeks for blood work.......he doesn't seem that concerned, but my neuro is FABULOUS and will have me tested for everything!

What would be my symptoms if my kidmeys were giving me problems? Are yours OK? I try and drink water/tea/juice/ all day long......just to keep them going - especially while I'm having my monthly IV IG - I have heard that can be really hard on them......

Enough about me - what;s been going on with you? Are you better now?

Big hugs!
Erin

Originally Posted by Maxwell'sMom

Hey Erin, I haven't been here in a while, sorry. Been battling some medical stuff myself.
Have you spoke with your doctors about this, and what do they say, and or do?
I Have to give myself ProCrit Injections, and I just finished Iron Infusions. 4 weeks worth. So, make sure your kidneys are okay, it could be them causing the problem.
What meds are you on, as meds can cause kidney damage, and then your iron count can get really low.
I can't remember what my ferritin level was, but that's why I was concerned about your kidneys.
Love Lizzie

[Maxwell'sMom]

Erin, Symptoms for Kidney disease are headaches, high platlet, (and yes, i was told that's normal for mg'ers as well) My filtration rate is 43, or was it 45, anyways, that's stage 3 kidney disease. Being tired, dizzyness, being nauseated at times, and you can have aching kidneys.
Iron levels in blood work will be low. Mine was so low, I had to have iron infusions, and I have to give myself ProCrit injections every two weeks.
Many of the symptoms, and blood work you described are the same for Kidney disease.
In May, I have to have a biopsey. Not looking forward to that.
I also have to go and get an updated stress echo to see what my Pulmonary pressures are, as I have Pulmonary Hypertension. I have that at the being of june, souly because in May I have appts. galore.

I also have Cardio problems, and have had them since my late twenties. Some things you have go with cardiac problems, and some don't. It's funny, cause there are so many things out there that can cause the same symptoms.
Ask your doctor to do a kidney function test, which can be rather routine in blood work, so it isn't something odd to check, where the insurance company will give you trouble or anything.
Medically speaking, I've been going through quite a bit, and have spent a lot of time down.
I sure hope it's nothing with your blood work, or just a passing problem as we all get, and not something that will be complicated.
it's so good to talk with you.
Love Lizzie
P.S. Listen to Annie, she knows a lot too.

[AnnieB3]

Lizzie, I tried to do one of those "thanks for this" things but it didn't work. That was so very kind of you - I truly appreciate it.