Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Me again - sorry for bombarding you all with questions but I have just read something on another forum which has made me curious about what you all think!
Since I started with this 9 years ago I have had this problem to one degree or another - it was usually after rushing around to get ready and going out or getting into the car to drive etc. or at the end of a day.....to be honest, its just unpredictable like all of the symptoms can be (!!) but usually followed some exertion and mostly happened when I was out. After being told there was nothing wrong with me - I put this down to anxiety and probably spent years talking myself into anxiety!! It is only since this flare up that I can see the pattern between what I thought was anxiety and the increase in my MG symptoms.
The person on the other forum was discussing her breathing issues usually when standing for too long and said she had brought a finger pulse ox to see what was happening when she felt this way -
"What I found was.... The spells hit when:
A. Oxygen sat dropped below 90
B. My pulse increased more than 50 beats per minute to keep the oxygen above 90
C. My bowels were not happy and cramping
D. I would go pale... And feel faint. Even confused a bit.
E. I would get some chest pain.... After a while of decreased lung function, it hurts to breath. The muscles are sore......"
This is exactly what has been happening to me for years and I have been sure it was anxiety! I have a problem with standing (and sometimes sitting if I am having a "bad" day) in one position for too long, queues are the worst!! I start to feel faint and get a dull pressure in my chest and want to lean forward which seems to take the pressure off a little especially if I lean against something! I can feel my heart beating, not palpitations, just a stronger beat and I also feel quite nauseous and go quite pale which lasts after the faintness passes? It tends to ease if I move around which I thought might fit with blood pressure as my blood pressure can be on the low side but it has been checked at the Doctors in previous years on sitting and standing and found to be fine....so this post has me wondering about the pulse ox??
I just wondered what you all think as I know Pulse Ox isn't always the best indicator of our problems but I thought maybe it was worth a shot in buying one as they are quite cheap on eBay as this would give me the chance to monitor it - as this is a typically intermittent problem and I can't it happening on an appointment!! I did mention, on my lung function test that the nurse did my pulse ox there and it read 84% so she told I must be cold (to be fair I do usually have cold extremities!) and she asked me to run my hand under warm water and rub my hands together and then the reading went up to 96%/97%....so maybe I will get lower readings anyway because of my tendency to have cold hands?? But wouldn't heat and movement increase the oxygen levels giving an inaccurately higher reading.....I hope Angie or Beth will jump in here with their medical knowledge or any of you who have more experience of this than me and know the mechanics of it all!!
Thanks again everyone! I will try to stop with all of the questions but thought this might help someone else like me who may not think this is MG related if, in fact, it is and this is something you all relate to :) x
Since I started with this 9 years ago I have had this problem to one degree or another - it was usually after rushing around to get ready and going out or getting into the car to drive etc. or at the end of a day.....to be honest, its just unpredictable like all of the symptoms can be (!!) but usually followed some exertion and mostly happened when I was out. After being told there was nothing wrong with me - I put this down to anxiety and probably spent years talking myself into anxiety!! It is only since this flare up that I can see the pattern between what I thought was anxiety and the increase in my MG symptoms.
The person on the other forum was discussing her breathing issues usually when standing for too long and said she had brought a finger pulse ox to see what was happening when she felt this way -
"What I found was.... The spells hit when:
A. Oxygen sat dropped below 90
B. My pulse increased more than 50 beats per minute to keep the oxygen above 90
C. My bowels were not happy and cramping
D. I would go pale... And feel faint. Even confused a bit.
E. I would get some chest pain.... After a while of decreased lung function, it hurts to breath. The muscles are sore......"
This is exactly what has been happening to me for years and I have been sure it was anxiety! I have a problem with standing (and sometimes sitting if I am having a "bad" day) in one position for too long, queues are the worst!! I start to feel faint and get a dull pressure in my chest and want to lean forward which seems to take the pressure off a little especially if I lean against something! I can feel my heart beating, not palpitations, just a stronger beat and I also feel quite nauseous and go quite pale which lasts after the faintness passes? It tends to ease if I move around which I thought might fit with blood pressure as my blood pressure can be on the low side but it has been checked at the Doctors in previous years on sitting and standing and found to be fine....so this post has me wondering about the pulse ox??
I just wondered what you all think as I know Pulse Ox isn't always the best indicator of our problems but I thought maybe it was worth a shot in buying one as they are quite cheap on eBay as this would give me the chance to monitor it - as this is a typically intermittent problem and I can't it happening on an appointment!! I did mention, on my lung function test that the nurse did my pulse ox there and it read 84% so she told I must be cold (to be fair I do usually have cold extremities!) and she asked me to run my hand under warm water and rub my hands together and then the reading went up to 96%/97%....so maybe I will get lower readings anyway because of my tendency to have cold hands?? But wouldn't heat and movement increase the oxygen levels giving an inaccurately higher reading.....I hope Angie or Beth will jump in here with their medical knowledge or any of you who have more experience of this than me and know the mechanics of it all!!
Thanks again everyone! I will try to stop with all of the questions but thought this might help someone else like me who may not think this is MG related if, in fact, it is and this is something you all relate to :) x
Wow I can really relat. I have been going 'pale' for theladt 7 years and looking like i would faintcas well. I also get worse in lineups and standing. I actually do better when I am moving?I also get the poubding heart not palpitations and the higher heart rate. And also hv been misfiagnoised with anxiety. I
hv also
struggled with low BP too. Sorry i dont have an answer to the O sat question
but hope onevof the knowkedable nembers will respond. However dince it took me so long to get a possible MG diagnois I was forced to search for other help for my symptoms.
These symptoms are similiar tobthe ANS ones often found in CFS. (Although not exactly as like you my BP doesnt change between lying down or sitting standing.Something ideas
that have helped me are adding more saltcand water to my dier (I use sea salt) I also take a few other supplements from my CFS specialist that help raise my BP to low normal range 125/75 or 80 when it used to be 105/60 or so. U find that i never get faint now and can stand longer in line I still get weak and SOB but my body doesnt seem to hit the panic button as quick. My specialist attributes some of these symptoms to adrenal dysfunction from the years of stresss on our bodies of a chronic dysfunction . In this case MG for you and MG and Fibro. for me. Good Luck and I am thankful for your posts I am still processing my diagnois and rewritingmy nemories and the years of thinking mostofvthis was anxiety.?! It's been liife-cha
nging.
I don't have a pulse ox reader; for me the symptoms of tense breathing and wilting posture are the indicator of what's happening and that I need to get up or move around. The only external solution I was considering is, strangely, a pair of Spanx with the high waist, to hold my torso together when my own muscles can't do it. This might not make it easier for me to breathe if it's constricting my abdomen, but sometimes when I'm slumping over at my desk I feel like I need a corset to hold myself upright. Ha.