Out of breath, am I a massive hypochondriac?

[MGproblems]

I’ve named changed.

I’ve recently been diagnosed with a condition called Myasthenia Gravis. It has cause muscle weakness and can cause respiratory weakness. I don’t really know much about what to expect if I start to get weak with breathing but I know it can be an emergency called a myasthenic crisis. I’m on medication for MG but not yet that well controlled, although it’s very early days.

I started to feel breathless today and saw my GP who was nice but said you can get a condition where you are short of breath but it’s not serious and it sounds like you are sighing. Firstly, what is this called? Secondly, was he suggesting I’m hyperventilating? Thirdly, am I just a massive hypochondriac? :( he asked me if I was anxious. I am anxious because I don’t know what signs to look out for and I don’t feel well.

Obviously I’d get urgent help if I got worse but I feel ridiculous and fed up. I’m not seeing neurologist till December but I’ll phone on Monday to see if I can see him earlier.

I’m going to answer just because no one else has -which is a shame.
Sorry you’ve got MG. It’s an unusual illness, and I suspect lots of general Drs don’t know much about it.
Your breathlessness could be related to the MG or it could be anxiety. Which do you feel
It is?
Please don’t feel put down by the GP. They wouldn’t have meant to cause that. I think you’re at the beginning of a big learning curve about your illness. Are there any support groups that you can access online or in real life who can help you distinguish what’s due to the MG and what’s caused by anxiety?
Do chase up the Neurologist- getting a clearer picture of understanding your own symptoms will help. Take notes of what you want to ask.

Is your breathlessness worse at any time of day? Does it change with medication? I assume you’re on pyridostigmine? (Mestinon)

Do you have a specialist nurse you can contact?

Thank you both, I appreciate it. I have yet to spend much time on onlin groups because I found them scary and also, I just didn’t want to admit what’s wrong with me. Silly, I know.

I don’t feel anxious but I’m not unwilling to think it may be anxiety.

I get worse as the day goes on which is in pattern with my other symptoms. I’m on mestinon and it does seem to help a bit.

I don’t have a specialist nurse but neurologist is very good. I’m happy to see him privately for a consultation if that speeds things up but his nhs secretary is very helpful and has helped squeeze me in before.

Thank you again x

I think with the possibility it might be anxiety - does it go away if you’re distracted? Or do you find yourself feeling breathless even though you’re concentrating on something that you’re enjoying.

It’s good to be open to explanations such as anxiety, but sometimes we’re too quick to acquiesce to these suggestions by Drs, and it really is the underlying illness. You have to stand up for yourself - especially with an unusual illness, and in the current NHS. It’s just very stretched - the people in it work very very hard.

It doesn’t go away if distracted. For example, I was at work yesterday and felt so breathless and weak by the afternoon. I love love my job and it kept me busy. I took DS to mini golf after school and he was delighted but I felt horrible which made me feel guilty.

I do wonder if I’m very unfit which isn’t helpful and might make me feel puffed out. I used to be active until the MG onset. I was sedentary for quite a few months, not able to walk the dog or do the school run and off work sick etc.

I’m going to try some mindfulness apps. I’ve always liked mindfulness and relaxing music before bed. I’ll see if that helps.

I also think I need more info about MG; normal signs, emergency signs and how to self manage my condition. My neuro is great but they’re pushed for time in the NHS and you don’t get much info or education. To be fair, I could very much look online but I’ve been in denial until recently..

This charity website looks useful, not too detailed or horrifying. It’s UK based so relevant.

www.myaware.org

I know what you mean about forums and support groups - sometimes they can be a “I’m worse than you” competition.

From what you’re saying- I think it might be the MG rather than other explanations.

Are there any books out there which might give some insight as to how others have coped? Maybe if you go to a local support group you might find people that you click with?

Unfortunately sooner or later you need to learn to advocate for yourself and get the best treatment that you can - in order to get the best life you can.

Don’t be pushed into saying it’s anxiety or lack of fitness. Use medication to sort the illness out as much as you can, and take it from there. Try and monitor any factors in your life that make things better or worse - sleep/ exercise/ stress/ diet - all those sorts of things.

I really hope things improve for you. Xx

Thank you both :) it’s been helpful to just write it down to be honest.
Ended up phoning NHS 111 who suggested keeping an eye on things but thought I may need steroids. Feel a bit more rested today but got breathless as the day has gone on. I think it’s because I’m tired, I have noticed everything gets weaker as the day goes on.

I know absolutely nothing about your illness but l do get breathless when my iron levels are low. Can you make sure everything else is up to par so you can rule that out. Maybe take it very easy for a while with no extra activities so you give yourself a chance.

Thank you. I have normal iron but slightly low haemoglobin. I didn’t know that might make me feel breathless.