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MDS Myelodysplastic syndromes

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  #1  
Old Mon Mar 11, 2019, 12:41 AM
Cheryl C Cheryl C is offline
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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. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Tue Mar 12, 2019, 01:32 PM
Bob Macfarlane Bob Macfarlane is offline
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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, 10:57 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. TP53 and TET2 mutations
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Old Fri Mar 15, 2019, 04:38 AM
Cheryl C Cheryl C is offline
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Thanks for the responses guys. I’m seeing my GP on March and will see what she has to say. My blood pressure is on the low side so hopefully it’s 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. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Fri Mar 15, 2019, 06:16 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 born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in 2017.
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Old Thu Apr 4, 2019, 05:36 PM
Kevin88 Kevin88 is offline
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Hello, I’m new to this forum. My husband was recently diagnosed with SAA and he had a dizzy spell and it was due to low hemoglobin.
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Old Fri Apr 5, 2019, 03:57 AM
Cheryl C Cheryl C is offline
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Thank you all! Fortunately my dizziness and feeling unwell resolved over a period of about 2 weeks. Interestingly during that time I noticed I had a boil-like thing on my upper left leg, and I'm fairly convinced that I had a tick bite with the head embedded. I think this explains my unwell phase. As my leg resolved I felt better. My GP thought maybe it was a white tailed spider bite, but it looked more like a tick bite when I checked images online. I did have a tick bite many years ago which made me feel unwell.
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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. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Fri Apr 5, 2019, 06:59 PM
Sally C Sally C is offline
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Hi Cheryl,
Do y'all have Lyme Disease in Australia? If so please get treated with Doxycycline. There are reactive tests for Lyme but they don't always show positive. It can end up being a crippling disease if not treated.
All the best!
Sally
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  #9  
Old Mon Apr 8, 2019, 02:51 AM
Cheryl C Cheryl C is offline
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Yes we do have Lyme disease here and I have a friend who contracted it. I don't have any further symptoms from my "tick" (?) bite at present.
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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. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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