Hi everyone - I am really struggling now and I'm not even sure if it's something that is even to do with MG - can any of you help me with this even if its just to say - No, it's not really an MG symptom.

At the moment I am struggling, I am on 90mg Mestinon 5 x per day and awaiting my Neuro to come back off holiday to look at doing the SFEMG and talk steroids/immunosuppresants. I have been going downhill for about 4 weeks now and along side my facial weakness and intermittent arm/leg weakness I am having problems with my chest and mainly with standing and sometimes sitting upright. I am deathly pale at the moment and constantly look worn out which I am putting down to my body struggling. When I stand I get a pressure dead on my chest, it feels a real effort to take a full breath and almost like I am stretching my chest muscles and the muscles at the base of my throat (the only time I ever had this before being ill was after blowing up too many balloons, if that helps to describe it at all?!) If I try to keep standing (like if someone stops me to talk or I have to queue) I can get a bit of pins needles in my chest...a bit like the feeling you get before you faint and all the oxygen has gone from your body?? If this happens leaning forward can help or against something but I usually want to lie down and when I do - its such a relief, my little hearts beats like it took all its effort to stay upright and then O rest a little and I can get up again! Sometimes when I'm sitting I even get like this and have to lean against something! It does also sometimes gets better if I can gently move around a little or shift my weight from one foot to the other rather than staying still?!

Is this MG??? I don't feel like my muscles are fatiguing or struggling to hold me up like I know some of you unfortunately get...unless this points to my chest muscles fatiguing?? This is driving me mad, I haven't been able to work for a couple of weeks, I'm scared to go to the shop in case I have to queue, or pick my daughters from school as I don't know how long I can stand for and I'm really scared to drive my daughters anywhere! I just can't trust my body to behave!

Can anyone help me understand what this is or if I should be looking for another cause outside of MG??

Thanks everyone x

The fact that you've been going downhill sounds like MG (fatigable), but that doesn't mean that it's all MG. If it's bad enough that you can't work, then it's bad enough to SEE a doctor!

Do you have a good internist? Someone needs to see if you are anemic, if your heart is okay (do an ECG, etc.), test your strength, check your O2 saturation, etc.

We can all guess at what's going on but that is not a substitute for a doctor checking you out!

Yes, the tingling could be a lack of oxygen but it can also be a circulatory or nerve issue. Or a hydration/electrolyte issue. Or something else!

Has anyone checked your orthostatic blood pressure/pulse? It's when you lie down, take BP/pulse and then stand up and retake it. Some people with those symptoms have Postural Orthostatic Tachycardia Syndrome (POTS).

Do you have an oximeter? Your doctor might be able to prescribe one.

Please just get in to see a doctor. If you feel very weak, short of breath, etc., go to the ER. You know the drill!

Are you one of those people who has to know it before they know it? Let the doctor figure it out. What's going on might not be MG or might be exacerbating your MG. It hardly matters, because you need help!


Annie

Okay, I just read your reply on the "psychiatric" post. Quit beating up on yourself!

Whatever a doctor does or doesn't do is on THEM. It isn't about you. Neurologists do this crap to patients all over the world. Yes, there are great ones, like you finally found, but you are not responsible for that former one's inability to help you.

And sometimes antibodies are so busy attacking your tissues that they don't come out to play for that antibody test! Sometimes they don't show up until later on. Antibodies fluctuate. They've also found three MG antibodies so far and that tells me that there are probably more of them! The neuromuscular junction is complex and there are a lot of places that can be attacked (by different antibodies).

Bottom line? Try not to let other people be the steerer of your own life! It's your life, it's your psyche. No one has the right to put you down, unless you let them. If they do, the problem is theirs.

Now go get yourself some healthcare!!!

Thank you for your lovely reply...sorry for the delay in responding but I spent a rollercoaster 24hrs with the medical profession and the varying opinions!! It has made me realised how complex this illness is!! I wanted to update you -
When I posted it was around 9.30pm here in the UK so I phoned the Out of Hours GP service we have here to ask for their opinion as a trip to the bathroom left me needing to lie down for 20mins to recover - she was lovely, very interested in asking about MG and admitted she knew little about it. She said it sounded like my chest and throat muscles were fatiguing and my voice was audibly weak. She said all she could offer was a GP visit which would listen to chest to rule out infection and do a pulse ox which we agreed was probably not helpful. By the time I got the call from her (you have to call in to a triage service and then they get the Doctor to call back so I had been lying down for a good 30mins) the symptoms had eased, as they do if I get the pressure off my body. She was reassured that I wasn't breathless and said it sounded like my postural muscles were fatiguing so if I was happy to stay lying down as I was going to bed she felt admitting me at that time of night would be more fatiguing for me but I should ring my Consultant secretary first thing and ask to speak to his senior registrar and see if they could perhaps prescribe some steroids until he came back.

I did as she said and my Neuro's registrar was lovely - she asked lots of questions and said she would not be happy to prescribe steroids without seeing me, she felt there needed to be a plan in place for me to see a local neuro for emergency treatment as being 2hrs away was too far, she said my voice sounded weak, I was clearly unwell, I should not be alone and I needed help. She said she would text my neuro on his holiday to check but she would want to see me and possibly admit me as soon as I felt I could make the trip......as you can imagine, I was getting worried now!!

She rang an hour later saying she couldn't contact my Neuro but she felt I should come up to her and be prepared to be admitted. She was reassured I wasn't breathless but said things could change very quickly and someone could have minimal symptoms one minute and full blow crisis the next. So I started making arrangements to go when my neuro rang....this is the first time he seemed off, he started saying how he would not prescribe steroids without the SFEMG as it was too risky as we had discussed, I reminded him that he had also said a negative SFEMG would not change my diagnosis or my treatment and he said he felt my case justified steroids but that a positive SFEMG would be helpful to support the diagnosis (which I agree with unless I feel like I did that night!!) He seemed to be reading from the notes he made on our last appointment (as he was started off saying how how he wasn't charging me that appointment which seemed irrelevant to this discussion but was the first thing he wrote on his notes that day and the rest followed in the same order as we discussed it that day) this may explain his off-ish-ness, or that he was in work on his holiday, or that he didn't appreciate his registrar wanting to admit me?! OR just a bad day?! He did seem to soften towards the end and said he would push for the SFEMG as soon as possible but it would still take 4-6 weeks and in the meantime I should go to my GP for medical assessment and they should contact him of they have concerns or want to admit me - BUT he felt that as I was describing pressure on my chest and a stretching feeling at the base of my throat this was not really consistent with MG as it does not cause discomfort?? Yet, his registrar was very concerned by the exact same symptoms??

So feeling very confused and like I'd made a nuisance of myself I rang my GP - they said they felt it was something very specialist for them to be looking at but got me in straight away. The pressure thankfully was not as bad as the night before and I could stand a little longer, the tests showed nothing but he was concerned at how pale and ill I looked and thought my 90mg of mestinon 5xper day was a massive dose especially as I'm only petite, he sent me straight to the hospital for assessment and investigation for a thymoma which he said could be pressing on something. It took 5 hours at hospital for bloods, ECG, one breath Spirometry test, oximetry and chest x-ray. They were all lovely and saying how rare it is and I was welcome there for assessment anytime as it must be a worry as anything could trigger a crisis. Thankfully everything looked reassuringly good....although I know the pulse oximetry is no indicator for MG!! They have referred me for a CT scan asap to double check for a thymoma despite the x-ray looking clear....I'm not sure how likely it is for it not to show up on x-ray and then show up on a CT?? Do any of you know??

So, I went home at 10pm last night exhausted and confused by the whole rollercoater!! I woke with very little voice this morning and it feels as though I strained it having to talk so much yesterday whilst it was already so weak and my chest muscles feel pretty sore too especially when I breathe!! I have decided to drop my mestinon to 60mg 5xper day as I seem to have gotten worse and worse on the higher dose - the lower dose had become less effective but I felt nowhere near as ill as I do now! So, fingers crossed I feel better in a day or 2!! Maybe I've had a virus, maybe the higher dose made me worse, or maybe the MG is flaring.....I honestly feel bewildered by it all....and a little hurt at my neuro as he's always been so caring before?! I don't know whether he thought I had phoned asking for steroids but I only said that the out of hours GP had suggested it?? I don't know?...and as you know, I tend to be a little sensitive and beat myself up over the way Doctors are! I also had a withheld number call my house and mobile right after the other at 11am this morning and leave no message which was one of the appointment times his registrar had given me and I wondered if it was her as no one really has both numbers except my Doctors and family. It's probably nothing, Who knows?!

Thanks again to you all for your reply and support - it really means so much to me!! Let me know if you have any thoughts on this? I just feel completely confused with the mixture of concern and dismissal over the same symptoms!
Eve.x