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Old Sun Mar 10, 2019, 11:41 PM
Cheryl C Cheryl C is offline
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Location: Lake Macquarie, Australia
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Dizziness anyone?

Hi all

About a week ago I had a terrible dizziness episode where I had to lie down with my eyes shut for an hour or more before I could start to focus normally. I felt nauseous and sweaty at the beginning. I gradually improved over about 3 hours to where I could get up and about again, but ever since I've felt a bit unwell. I'd never had an episode like that ever. I did often feel nauseous and sometimes a bit light headed when my blasts were at 10%.

Interestingly the next day I got a call from my GP surgery to say that I needed to see my haematologist because my ferritin is low. They sent my latest results through to him. However I got a message back from my haematologist that I didn't need to go any earlier than June, when my next appointment is.

I've started supplementing with Flurodix (iron) however am still feeling a bit unwell. Naturally I'm wondering if this episode has anything to do with my MDS. Have any of you had episodes like this?
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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Old Tue Mar 12, 2019, 12:32 PM
Bob Macfarlane Bob Macfarlane is offline
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Location: Soutwest Ranches, Florida
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Weakness

The obvious reason for dizziness needs to be checked first. You're not a natural blond are you?

Seriously though, the only time I have experienced dizziness is when my HgB has gotten very low.
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Old Tue Mar 12, 2019, 09:57 PM
maggiemag maggiemag is offline
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Hi Cheryl, I'm sorry you are feeling unwell. When I feel lightheaded and weak, it's usually my blood pressure, which tends to run very low. You may have been dehydrated? There is also an inner ear disease called Meniere's, but I think it's more of a "room spinning" feeling, not dizziness. You can get a virus that affects the inner ear as well. Did you get checked out by your GP? I'm not sure it has anything to do with MDS, unless your Hb is very low, and you would probably have other symptoms, plus it wouldn't go away til you were transfused. Of course, I'm a retired RN, not a doctor! I would start with your GP. Good luck, Margaret
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS
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Old Fri Mar 15, 2019, 03:38 AM
Cheryl C Cheryl C is offline
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Location: Lake Macquarie, Australia
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Thanks for the responses guys. Iím seeing my GP on March and will see what she has to say. My blood pressure is on the low side so hopefully itís just that.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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Old Fri Mar 15, 2019, 05:16 AM
Meri T. Meri T. is offline
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Meniere

Hello Cheryl,
I had Meniere, as Margaret has mentioned. I was dizzy even when I was lying down. I also had headaches, nausea, painful shoulders, blocked ears and a stiff neck.

My GP said stress (?) and gave me some pills.

Hope your GP can find out what is causing your dizziness.

Meri
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Female 52, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. GVHD GI tract, liver, skin, eyes. Thanking God everyday for Life is wonderful.
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