Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Sun Mar 10, 2019, 11:41 PM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
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?
__________________
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.
Reply With Quote
  #2  
Old Tue Mar 12, 2019, 12:32 PM
Bob Macfarlane Bob Macfarlane is offline
Member
 
Join Date: Feb 2010
Location: Soutwest Ranches, Florida
Posts: 126
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.
Reply With Quote
  #3  
Old Tue Mar 12, 2019, 09:57 PM
maggiemag maggiemag is offline
Member
 
Join Date: Sep 2012
Location: Cincinnati, OH - United States
Posts: 92
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
__________________
Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
Reply With Quote
  #4  
Old Fri Mar 15, 2019, 03:38 AM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
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.
__________________
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.
Reply With Quote
  #5  
Old Fri Mar 15, 2019, 05:16 AM
Meri T. Meri T. is offline
Member
 
Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 174
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
__________________
Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in 2017.
Reply With Quote
  #6  
Old Thu Apr 4, 2019, 04:36 PM
Kevin88 Kevin88 is offline
Member
 
Join Date: Apr 2019
Location: Nellis, WV
Posts: 6
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.
Reply With Quote
  #7  
Old Fri Apr 5, 2019, 02:57 AM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
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.
__________________
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.
Reply With Quote
  #8  
Old Fri Apr 5, 2019, 05:59 PM
Sally C Sally C is offline
Member
 
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 467
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
Reply With Quote
  #9  
Old Mon Apr 8, 2019, 01:51 AM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
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.
__________________
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.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Do you ever feel normal with MDS jmajjb MDS 51 Tue Aug 26, 2014 10:51 PM


All times are GMT -4. The time now is 12:04 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org