It sounds like MG to me and it also sounds like you may be heading for a Mg crisis. I don't want to scare you but you may want to get checked out and see if your blood pressure is fluctuating when you stand / lay down / and set . As I understand it -- the primary goal of MG is to attack your diaphram and cause beathing problems. Best of luck and health to you , Charlie

Hey! I have been thinking of you! I am having the same breathing issues right now. I have to take a lot of deep breaths and resting ALWAYS helps. I do not have the needles and pins feeling in my chest, but the balloon symbolism was good and that is what it feels like.

I am glad you are not pushing yourself to work. With MG, you really learn to listen to your body.

Take is easy, greasy. HUG!

Barbel

So sorry to read of your discomfort. Your symptoms are similar to mine when I first came down with MG, but your symptoms are more severe. I could not inhale smoothly, and standing in one place was not easy. Once I started on Imuran, and received the first IVIG treatment, the symptoms began improving. Also, I had to switch to the timespan Mestinon, as the regular tablets would have no effect mostly, although I am the only one who has had this problem, I believe. Please get checked, we have to breathe. Take care, Tim

I've had times like that in the past few years. Can you make it to a family doctor for a check out before your neuro returns? I've had extra weakness when my potassium, calcium, Vitamin D and thyroid medication were all too low. If you have your levels measured on basic electrolytes, etc then your neuro will know where to start.
Good luck and head to Emergency if it gets worse!
Flutebell

What is your single breath count, Eve and what is happening with it? You are looking at hospitalization and need to get ready so the children have someone to look after them. Breathing problems are nothing to mess around with and it sounds like you are having enough diaphragm fatigue that you are using the muscles in your neck and between your ribs to help breathe, not very strong muscles at the best of times. Be sure and have your MG info if you have to go to the ER and don't let them close the door or the curtain because your oxygen saturation is fine. That only falls when the diaphragm fails. Let us know how you are. Hugs, b.

Yes, I agree
I would also go to the best ER around. The best hospital ER. Be sure to tell them you have MG as you enter and that you are having trouble breathing. And as bweeds said.....if a nurse says your oxygen levels are ok and dismisses you request a neurologist immediately.
They will assign you another neuro if yours is out of town.
The further down hill you go the harder it will be to climb back up.
I don't know what time it is there but you could call your neuros office and tell them you are having breathing difficulties. They may let you see another neuro immediately in their office(to avoid ER) but most likely they will tell you to go to ER.
If you would like to know had bad this can get quickly I will be more than happy to share that with you.
Ann

Gosh, I'm sorry to hear that you are having to struggle so much to breathe. Like Barbel, I have to take a lot of deep breaths and I sigh very frequently. Sometimes that's all I feel until I have to stand for an extended period. If that happens I often feel like a weight is kind of dragging me down toward to floor. Kind of like the sensation you get when you are in an elevator and it starts going upward very quickly. My legs feel like they weigh a ton and each step I take gets heavier and heavier. I don't have the pins/needles either but sometimes I feel like there is no room for my lungs to expand completely so it feels really tight.

I understand exactly what you are talking about. I agree with the others who have responded. You shouldn't wait for your neuro to return. You should be seen soon because the one issue that can bring you down without any warning, is breathing. You should check in with your primary doctor. Make sure not to leave anything out. If you can write them all down before you go to seen the doctor it will help you not to forget the important things. I would certainly make sure that you make arrangements for child care in the event that you need to be treated for more than just a few hours. I certainly don't want to scare you but this is very important and should be handled ASAP. As others have mentioned, make sure that you have your MG information in order and prepare as much as possible for the worst case scenario but as always, hope for the best. Please be cautious if you choose not to see a doctor until your neuro comes back. Things can go down hill really quickly.

Please take care of yourself and let us know what you decide to do. As always, keep us updated. We are all worried about you my friend. Hugs to you dear.
Angie

This is all too familiar. Every bit, unfortunately, especially the worry about the children! I think you are feeling the effect of the CO2 in your blood that isn't expelled when you are breathing. It makes you woozy, like you have hyperventilated. You can't see this with a regular pulse-Ox... because your oxygen levels would be normal.

Deep breaths (expel all of the air) and please get to the hospital soon! You may need IVIG to set you right in the short term.

For most of us, a good response to mestinon is a diagnosis. Tell the Drs about this -- tell everyone you see at the hospital. Mitochondrial disease also is helped by mestinon, but that is very rare (but so's MG). Good luck and you will make it through this scary part, and on to the next part, which is primarily complaining about the side-effects of the steroids! ~joe

In total agreement about getting to the emergency department. ** Does anybody here think she may be taking too much Mestinon? ***

We all know everyone is different, but I did not tolerate the jump from 60mg (every 4 hrs) to 75mg (every 4 hours), and after about a week had to go back down to 60. When I was at 75, I was very short-of-breath, very dizzy, and my legs were profoundly weak (weaker than normal).

I know the Mestinon is a blessing for those of us that it works, but too much is not good either.

I'm also concerned that if/when she does go to Emergency Room, the first thing they'll want to do is give her MORE Mestinon.

Take Care, and Keep us posted.

I just wanted to say I hope you are feeling better, or got to see a doctor! This sounds somewhat similar but not identical to what I've felt when my trunk and respiratory muscles are weakened. It is scary. Make sure to update us when you get a chance!

Eve,
I've had these symptoms. I have tried my best to articulate this feeling to my doctors who look at me like I'm speaking a foreign language. This is the first time I've heard someone else put those symptoms into words.
I too dread lines in stores. As long as I'm moving around I feel like I can get through the store ok. But as soon as I stand in that line I feel like my body is going to melt into a puddle on the floor. I've got an 8yr old and a 6month old and going out alone with them, especially to places with a lot of standing worries me too. That's why I only do it during my best hours. Driving can be crazy uncomfortable. Sometimes appointments and school events fall during my weaker times-- I just take my mestinon and pray my way through the event.
My trunk muscles have been weak since 09. Not knowing the cause back then, I started wearing a corset to give my core some strength. I was diagnosed with MG in 2012.

Please get seen right away. I hope you feel better soon.

I have Musk positive MG and do not respond well to Mestinon. It gave me awful stomach pain. I found that it also gave me a false sense of strength, almost a rush, I would do a bunch of stuff and when the Mestinon wore out, I noticed the symptoms you describe, just pins and needles were through my arms and fingers. I no longer take it and take breaks after everything.. Showering, bringing up laundry, folding a load of clothes. I do not drive more than an hour and bring another adult or fortunately my older son with me when i have my two year old. It sounds to me like you are describing MG symptoms. I have learned that this disease definitely manifests itself in everyone differently and even day to day my symptoms worsen/improve.

Thank you all for your replies...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!!

After the first few replies came in 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 even though he's on leave 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 pretty 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?! I also had a withheld number call my house and mobile right after the other at 11am this morning andleave 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 replies and support - it really means so much to me!! I was starting to think it was just me but it is reassuring to know you have similar symptoms...this illness knows how to test us doesn't it?! 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!

Thanks again everyone :) x

NEVER feel you are being a nuisance with medical staff. You must advocate for yourself no matter what! It is really difficult to sort out what is true medical expertise and what is belief in conventional knowledge of MG among those doctors. They know way less about our bodies (and sometimes about MG, since we have so many cases against which to compare here) than we do, so it is important we not give up making ourselves understood. I hope you got enough support from the group to feel validated and wary of the danger zones. Hug.

Holy cow, what an event huh? I'm sorry that your neuro seemed to be otherwise occupied and dismissive of your symptoms. He should be ashamed of himself for that but that's a conversation for another day. His insistence on the SFEMG is alarming to me in light of the fact that he said it wouldn't change his diagnosis or treatment. I understand his not wanting you on steroids before the study but in the event of worsening symptoms, who gives a hoot about the SFEMG. You need treatment. That part worries me about your neuro's response in the event of a full blown crisis. I agree that you need someone closer to treat you in the event of an emergency. I hope that you are able to get that part taken care of. I hope the reduction in your mestinon improves your symptoms. It does seem like quite a high dose but as we all know, everyone's MG is different from the next. As Elinora said so eloquently, "NEVER feel you are being a nuisance with medical staff. You must advocate for yourself no matter what!". Nobody else will fight our battles like we will. Nobody else will understand your body like we do. The squeaky wheel gets the grease honey, so squeak away. Become one with your inner squeaker.... lol. Please let us know what becomes of the reduction in mestinon and how you are doing as things progress. In the future or if these symptoms continue I would hedge my bets and head to the ER with your information in order. You'll just have to be hyper vigilant about what medications they give you and make sure that someone is with you to speak up if they try to give you something that you shouldn't have. I'm so glad that you are okay. I've been worried about you, as many others here have been. Please take care of yourself and keep us posted. I'd give you a bear hug but that would be bad for your breathing so I will just send you regular hugs until you have started to improve. Aloha!
Angie