All,

Does anyone have hemoglobin level issues and/or anemia?  I'm wondering if there is a correlation with moya moya.  I was recently identified with an abnormal hemoglobin trait, which can cause mild anemia.  In a normal person, it doesn't affect much, but for a moya moya patient, it seems the lack of oxygent can cause lots of exhaustion and fatigue.  

I have sent notes to all my doctors but I wanted to know if there is anyone else out there who has experienced this and/or has been tested for abnormal hemoglobin traits and/or levels.

Thanks,
Trina

Hey Trina,

I don't know if you remember me mentioning this or not, but I had a bout with Hemolytic Anemia 6 years ago.  By the time I dragged myself (almost literally) to the doctor, my hemoglobin was at 5.8 (normal range is 12.0 - 16.0).  The hematologist said she was surprised I was able to walk in, and immediately admitted me to the hospital.  I had a blood transfusion, followed by a several month course of prednisone.

The anemia hasn't recurred, but 2 years ago I had a platelet problem (6,000 when the normal range is 150,000 - 400,000).  Another stint in the hospital and more prednisone.  (O.K., so I respond well to prednisone, but it's not fun!)  

Anyway, my point in relaying all this is that maybe there's a tie-in somewhere.  Obviously, I'm a family member of a Moyamoya patient!

I hope your fatigue improves.  Until you experience it, it's hard to believe how debilitating fatigue can be, and I remember well how I truly didn't want to even get out of bed.  Not fun at all.

[smiley=hug.gif] Jill

aloha trina,
gee, it's been forever since i've been on here!  anyway, i did want to respond to this post because i too have been diagnosed as "anemic".  i'm not quite sure when all this began, but it seems as though ever since i was diagnosed with moyamoya, i've had more challenges.  my doctor has me taking ferros sulfate daily (and especially during you know when.. :-[  

i was also referred to a gastroenterologist to see if i may be losing blood/bleeding in my stomach area (i.e. ulcer, etc..)  in fact, i have a colonoscopy and endoscopy next week.  :-X  i also feel "exhausted" or out of breath easily and saw my cardio for that, but thank God it wasn't my heart.  ;;D  

has your dr. put you on iron pills?  how have you been feeling lately?  ( i just noticed you posted this almost a month ago!   :o

email and let me know how you're doing!

take care,
shan

Shane I was severly anemic when I had my first surgery and they done some kind of surgery ( I think it was burning my uterus walls ) to stop my periods.......ONLY Good Thing that this diease has done for me  ;)


Elaine

Me too - I've been taking SloFe (iron) tablets off and on for nearly ten maybe fifteen years.

During the last couple of years I underwent lots of diagnostic tests to rule out cancer. Turns out I have uterine fibroids or did have them which caused HEAVY bleeding every month, thus the low iron levels. A week prior to my STA-MCA by pass surgeries, my hematocrit was so low that I was given a transfusion - that was a very weird experience and one I hope to never repeat. One month after the STA/MCA surgery menopause began - at last (I'm 54). Doubt there was any correlation between that and the surgery, but it saved me from having to under go that surgical ablation procedure that Elaine described. STA/MCA surgery was quite enough for me! So, five months later my doctor says that all my iron levels are good and I'm now off the daily dose of iron. Next checkup is in July - I'll know then if I can give up the iron for good.

Is there a relationship between Moyamoya and hemoglobin? - I don't know, but I was plagued with both.
Kim

I know it has been a while since the last post but since I was diagnosed with anemia a month ago I felt the urge to check the forums to see if any others had dealt with anemia.
My doctor put me on iron tablets, three a day. But I feel little to no change at all.
I am supposed to take them for four months before I go back to the doctor and get my blood checked again. I can't wait that long so i will call tomorrow.
It's so bad I can't even go to work!
I have a part-time job and last week I had to work for four hours on Wednesday. When I got home I went to bed. In the evening I was too tired to eat.
I had to tell my employer I can only work 3-hour shifts until I feel better. This isn't normal. I used to be able to go for a 2-hour walk and feel fine. These days an hour exhausts me.
I cancel most of my social meetings because I am too tired to go.
Have others experienced this as well?
What can I do to feel better?
I really feel horrible, I want my social life back.

I have another question.
Ever since I had surgery I'm on aspirin like many(all?) of us.
Now one of the side effects happens to be anemia.
My fear is since I have to take aspirin my anemia won't go away, even if i'm on iron tablets. Am I right or just over sensitive?

well after being rid of anemia for a few months my symptoms reoccurred and I had my blood tested yesterday.
I will get the results back today.
Is there anyone out here who has had anemia multiple times?
And can this be due to meds.
I am terrified I will have anemia for the rest of my life!