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...
Hi everyone - I am sorry to pester and I know I have probably asked similar questions along my way but I am just trying to piece everything together and work out my next move and could really do with your help/thoughts/advice!
I have had a reasonably good couple of weeks (which has been lovely!) its been a long road back from my flare up in February and I have been taking it slowly. I wanted to give the Doctors battle a break and just do my best with Mestinon as they don't seem happy to offer me anything more with having no tests to back up my Clinical Diagnosis...but I feel like I am on the verge of going back downhill and may have to reconsider that decision! It was half term last week and I had my girls off with me, (full of colds!) and whilst we didn't really do anything, I did end up arranging a couple of playdates and a trip to the park on top of what I normally do so, (as depressing as the thought is that something so simple could have had this effect on me!), maybe that explains things?! I hoped a couple of days rest now they are back at school might nip this in the bud...but so far it seems to be taking it out of me more than I hoped and I am having all of the symptoms I had before my last flare up :(
I wanted to ask what your honest opinion is on these symptoms - are they MG or the signs of a worn out body...or should I be looking at something else to explain this??
Here are the symptoms - I would be so grateful for any thoughts on what you think about them??
Headache - pressure type headache (similar to when I had viral meningitis) relieved by supporting head. Light and Strong Smells almost "go through" me and I want to avoid both!
Neck also aches later in the day.
Pale (Deathly at times!)
Loss of appetite
Nausea
Chest pressure and feeling of more rapid heartbeat on standing/moving around (thankfully it is pretty mild at the moment!) - relieved a little by sitting but lying down is better and a huge relief - being upright feels like a huge effort and the sofa is my friend!!
Blurry vision - worse than usual and reading/computer/watching TV feel draining/an effort and make the headache worse!
My Legs are always easily tired and become heavy with fluctuating problems walking, but when I soften my knees out of a locked position my thighs shake taking the weight of my body. They don't seem to give out on me and do actually hold me up but they shake and become uncomfortable/achey under the pressure? When I walk it is like there is no power in my legs??
All of this impacts on the Typical MG symptoms and makes my facial weakness worse. Since my last flare up I struggle with losing my voice the more I talk also.
Another point that I am struggling with is that Mestinon was a miracle for me for 3-4months but now there are times when it works and times where I'm not sure if it makes me worse!! I have gone down from 90mg to 60mg 4-5 times per day and while the dose works it helps my facial weakness but when it wears off I sometimes feel worse than before?! I don't know, I am just confused at the moment as to what to do for the best?!
I am frustrated and confused - I had just started to feel like I was starting to actually do a little more after my flare up and doing a little more, I was back at work 2 mornings a week and hoping to make it 3 mornings thinking I would soon be back to my 4 mornings a week (which I am meant to work!) I know this thing has its flare ups and I thought I was managing well but now I see that is probably because I've been doing very little! I feel torn - I want to get back to work and was trying to prioritise my energy for that....but then I have 2 young daughters who I am barely able to take anywhere/do anything with, and my boyfriend and I haven't had a night out in over a year...and I haven't seen my friends for longer than that!! I feel guilty wherever I turn and the realisation is hitting that mestinon isn't the miracle it was at the start and maybe I need to either write to the Neuro and plead my case...or go to my GP and see what they suggest...or push for another Neuro and get back on the merry-go-round all over again! UGH!
Sorry to rant and waffle on but I really am left wondering what is going on and what I should do! I feel like I am left trying to work it all out for myself with no real support from the medical profession!
Thanks everyone :)x
I have had a reasonably good couple of weeks (which has been lovely!) its been a long road back from my flare up in February and I have been taking it slowly. I wanted to give the Doctors battle a break and just do my best with Mestinon as they don't seem happy to offer me anything more with having no tests to back up my Clinical Diagnosis...but I feel like I am on the verge of going back downhill and may have to reconsider that decision! It was half term last week and I had my girls off with me, (full of colds!) and whilst we didn't really do anything, I did end up arranging a couple of playdates and a trip to the park on top of what I normally do so, (as depressing as the thought is that something so simple could have had this effect on me!), maybe that explains things?! I hoped a couple of days rest now they are back at school might nip this in the bud...but so far it seems to be taking it out of me more than I hoped and I am having all of the symptoms I had before my last flare up :(
I wanted to ask what your honest opinion is on these symptoms - are they MG or the signs of a worn out body...or should I be looking at something else to explain this??
Here are the symptoms - I would be so grateful for any thoughts on what you think about them??
Headache - pressure type headache (similar to when I had viral meningitis) relieved by supporting head. Light and Strong Smells almost "go through" me and I want to avoid both!
Neck also aches later in the day.
Pale (Deathly at times!)
Loss of appetite
Nausea
Chest pressure and feeling of more rapid heartbeat on standing/moving around (thankfully it is pretty mild at the moment!) - relieved a little by sitting but lying down is better and a huge relief - being upright feels like a huge effort and the sofa is my friend!!
Blurry vision - worse than usual and reading/computer/watching TV feel draining/an effort and make the headache worse!
My Legs are always easily tired and become heavy with fluctuating problems walking, but when I soften my knees out of a locked position my thighs shake taking the weight of my body. They don't seem to give out on me and do actually hold me up but they shake and become uncomfortable/achey under the pressure? When I walk it is like there is no power in my legs??
All of this impacts on the Typical MG symptoms and makes my facial weakness worse. Since my last flare up I struggle with losing my voice the more I talk also.
Another point that I am struggling with is that Mestinon was a miracle for me for 3-4months but now there are times when it works and times where I'm not sure if it makes me worse!! I have gone down from 90mg to 60mg 4-5 times per day and while the dose works it helps my facial weakness but when it wears off I sometimes feel worse than before?! I don't know, I am just confused at the moment as to what to do for the best?!
I am frustrated and confused - I had just started to feel like I was starting to actually do a little more after my flare up and doing a little more, I was back at work 2 mornings a week and hoping to make it 3 mornings thinking I would soon be back to my 4 mornings a week (which I am meant to work!) I know this thing has its flare ups and I thought I was managing well but now I see that is probably because I've been doing very little! I feel torn - I want to get back to work and was trying to prioritise my energy for that....but then I have 2 young daughters who I am barely able to take anywhere/do anything with, and my boyfriend and I haven't had a night out in over a year...and I haven't seen my friends for longer than that!! I feel guilty wherever I turn and the realisation is hitting that mestinon isn't the miracle it was at the start and maybe I need to either write to the Neuro and plead my case...or go to my GP and see what they suggest...or push for another Neuro and get back on the merry-go-round all over again! UGH!
Sorry to rant and waffle on but I really am left wondering what is going on and what I should do! I feel like I am left trying to work it all out for myself with no real support from the medical profession!
Thanks everyone :)x
I'm so sorry you're feeling badly. I have a couple of thoughts.
My recommendation to you is that you get yourself a blood pressure machine. The chest pressure, headache, blurry vision, and excessive lethargy (which can be MG itself) sounds a lot like low blood pressure. The amount of Mestinon you are on is enough to lower your blood pressure significantly.
If you find your blood pressure to be too low, you need to get with your doctor to find out what can be done to prevent this. Take your blood pressure standing as well as sitting down and record your readings for your GP to see.
Talk about all of these symptoms with your GP. They are significant symptoms and you don't want to attribute them all to MG when it could be an unrelated issue.
When you have one autoimmune issue, it's not uncommon to come down with another. I've got a few and I'm hard pressed sometimes to know what symptom can be attributed to what autoimmune. You need to be evaluated to see if you have anything else going on.
I wouldn't expect much out of your neuro. Specialists have tunnel vision and if it's not their particular specialty, they won't delve any deeper. If you can get another opinion, I agree with the others that you should try to get another neuro. However, if you can't, I'd advise you to talk seriously to your GP about your concerns.
Perhaps it's time to go back to square one and have him look you over again and see what else he sees.
You are not ranting. You are frustrated and scared. I've certainly been there. It's hard to have an illness. It's even harder to have an illness while taking care of a family. So glad you had a few good days there that you were able to do some Mommy things with your girls.
Take care and I hope this helps somewhat.
You aren't feeling well.
It is real.
You are the patient.
You should have a neuro who will treat you.
Keep in mind....mestinon deals with symptoms but not a real treatment plan.
Just part of a real treatment plan
We care about you.
Taking care of two girls is a huge job. Rest as much as possible and take symptoms very very serious.
When we talk about mg roller coaster....this is what we are referring to.
Constant roller coaster even after finding effectve treatment.
Tell that doc you are feeling like you did before last crisis and are having trouble and need to be seen. Then go from there.
If you aren't feeling supported tell them that. If you don't come out of that encounter feeling respected
Move on to new docs.
Ann
You need a good going over by a good neurologist with experience with MG for sure. I am hoping you can get to one. Your primary hopefully can check out some things first to see that everything else is functioning ok. I am concerned about the chest pressure and the fact your symptoms are similar to when you had meningitis.
Wishing you find some answers soon. Hugs, Marie
I agree that you need to see another neuro. when you can.
That may seem overwhelming. I've had to see more than one as well and it was hard starting over with someone new. That was how I got real help though. Don't wait around for this neuro while you suffer!
Praying you feel better very soon.
Hugs,
Carly
GOOD LUCK
Chuck
What you say about Low Blood pressure is something I have wondered about...but my hate of the Doctors visits always has my BP up and so it never really shows!! Carly - thank you for your comment on the autonomic dysfuction...I have been looking that up and it seems to fit quite well...and there are also some papers linking it with MG written 2013/2014.....but also lots of people struggling to be diagnosed and palmed off being told they have anxiety - an anxiety about being upright?? That's a new one on me!! lol!! I brought a new finger Pulse Oximeter - my resting pulse is around 65 and sats seem to bump around in the 80/90's....but when I stand it struggles to keep a reading and looks to drop and then jump up to 90's bpm and sats drop to the 60/70s?! I'm getting a cuff BP monitor to see if that can give me a clearer reading...as this doesn't seem right?!
Right now, the sofa is my friend (again!) and I am resting as much as possible and hoping to be back on my feet again soon :) Thanks again everyone....I will keep you posted! x
Your symptoms suggest that it more likely MG.
You responded to Mestinone-that suggest your disease is related to ACh receptors. And most likely it is MG.
You didn't mention about any blood test for antibodies or about your thymus. If you have any positive antibodies or enlarged Thymus. It will confirm it. But these tests are also negative in many patients. So, you need to combine multiple factors.