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 know I haven't posted for a while, I've been trying to make the best of life and not dwell on things...if that makes sense!!
For those who don't know me or don't remember, I am seronegative for both AChR and MuSK and EMG and SFEMG did not confirm my diagnosis either! My (second!) Neuro kept his "Clinical Diagnosis" of MG but refused to treat beyond Mestinon. Thankfully my GP put me on Prednisolone in September...a month on 25mg had me feeling better than I have in years and greatly improved all of my muscle weakness....I found things easy I didn't realise had even been a problem!! At times I even forgot to take my Mestinon as I was feeling so good...until my face started drooping to remind me!
Then, my GP took advise (not sure form who?!) who said I should be able to drop 5mg per week once stable (a very quick taper, I know! But I didn't want to question my GP who's trying to help me!) Once I went below 20mg per all the symptoms crept back in, I was no longer stable and mestinon struggled to work efficiently. My GP said this was more evidence that pointed against the MG diagnosis? I was confused! Thankfully the Myaware people set me straight on that an advised me to go back up to 20mg per day and see a Neurologist ASAP. This is something I am not keen to do, and I am not keen to upset/offend my GP as he has put himself on the line by giving the steroids and I don't want to appear ungrateful or like I don't appreciate it?? But he admits he knows very little about MG?? He is happy to refer me on but with all my tests not showing anything he feels I will end up back with him no further forward....and we all know that he's probably right unless I can find that one consultant who is a needle in the haystack who would treat on clinical symptoms!!
As it stands my GP wants me down to 5mg per day ASAP but has said I can do it slowly as I feel ready in 1mg drops (after I gave him some information from the Myaware website) so I am on 17mg but as last time, anything under 20mg doesn't control it...20mg feels like I am just beating the symptoms as long as I'm careful not to over do it! I have started writing to Neurologists all over the country to see if anyone would be willing to consider treating me beyond what I already have and in the hope they may firstly actually reply to me and secondly, review my results and see something!! Though, I am definitely too experienced in all of this to be getting my hopes up!!!!
One question I have....does anyone feel like everything gets to them...people, noise etc! I'm not sure if I am on a short fuse because I am just so frustrated with the one step forward two steps back and all of the uncertainties? I am very frustrated to have a glimpse of life back and to now be struggling again!! I am also aware that pred causes mood swings but I was feeling a little like this before starting them - maybe they are making them worse?? At times I just want to be on my own, like I can't cope with anything else beyond trying to live day to day and take care of myself, the house and my family...all of which I do to a very basic level and I would love to do so much more!! I love have everyone at home on weekends, but sometimes the constant noise and needs of feeding, dressing and entertaining leave me feeling overwhelmed and snappy! The strange thing is, if I can sit down and get some strength back, I feel much more able to cope...maybe I am trying too hard to be "normal" and putting too much on myself?? I suppose if someone had flu for a week they would feel like they just needed peace and wouldn't tackle extra duties... and our bodies feel heavy and unresponsive everyday...so perhaps it is understandable?
Can anyone relate to this....or am I just turning into a naggy cow!! haha!!
Thank you all :)
For those who don't know me or don't remember, I am seronegative for both AChR and MuSK and EMG and SFEMG did not confirm my diagnosis either! My (second!) Neuro kept his "Clinical Diagnosis" of MG but refused to treat beyond Mestinon. Thankfully my GP put me on Prednisolone in September...a month on 25mg had me feeling better than I have in years and greatly improved all of my muscle weakness....I found things easy I didn't realise had even been a problem!! At times I even forgot to take my Mestinon as I was feeling so good...until my face started drooping to remind me!
Then, my GP took advise (not sure form who?!) who said I should be able to drop 5mg per week once stable (a very quick taper, I know! But I didn't want to question my GP who's trying to help me!) Once I went below 20mg per all the symptoms crept back in, I was no longer stable and mestinon struggled to work efficiently. My GP said this was more evidence that pointed against the MG diagnosis? I was confused! Thankfully the Myaware people set me straight on that an advised me to go back up to 20mg per day and see a Neurologist ASAP. This is something I am not keen to do, and I am not keen to upset/offend my GP as he has put himself on the line by giving the steroids and I don't want to appear ungrateful or like I don't appreciate it?? But he admits he knows very little about MG?? He is happy to refer me on but with all my tests not showing anything he feels I will end up back with him no further forward....and we all know that he's probably right unless I can find that one consultant who is a needle in the haystack who would treat on clinical symptoms!!
As it stands my GP wants me down to 5mg per day ASAP but has said I can do it slowly as I feel ready in 1mg drops (after I gave him some information from the Myaware website) so I am on 17mg but as last time, anything under 20mg doesn't control it...20mg feels like I am just beating the symptoms as long as I'm careful not to over do it! I have started writing to Neurologists all over the country to see if anyone would be willing to consider treating me beyond what I already have and in the hope they may firstly actually reply to me and secondly, review my results and see something!! Though, I am definitely too experienced in all of this to be getting my hopes up!!!!
One question I have....does anyone feel like everything gets to them...people, noise etc! I'm not sure if I am on a short fuse because I am just so frustrated with the one step forward two steps back and all of the uncertainties? I am very frustrated to have a glimpse of life back and to now be struggling again!! I am also aware that pred causes mood swings but I was feeling a little like this before starting them - maybe they are making them worse?? At times I just want to be on my own, like I can't cope with anything else beyond trying to live day to day and take care of myself, the house and my family...all of which I do to a very basic level and I would love to do so much more!! I love have everyone at home on weekends, but sometimes the constant noise and needs of feeding, dressing and entertaining leave me feeling overwhelmed and snappy! The strange thing is, if I can sit down and get some strength back, I feel much more able to cope...maybe I am trying too hard to be "normal" and putting too much on myself?? I suppose if someone had flu for a week they would feel like they just needed peace and wouldn't tackle extra duties... and our bodies feel heavy and unresponsive everyday...so perhaps it is understandable?
Can anyone relate to this....or am I just turning into a naggy cow!! haha!!
Thank you all :)
With that being said, I also can be very irritable. I've always been known for my patience and calmness, but the kids and all the noises seem to get to me more than they used to before Myasthenia.
And like Barbel said, prioritizing is a skill that you will learn to master, as it is a necessity with us.
Take care of yourself, and good to hear from you.
That is my polite response. My less polite is -- your doctor is not only ignorant about MG, he appears unwilling to learn about it. Anyone who cared about treating MG would know that 5 mg prednisone is not likely to be effective. The goal is not a number, but the smallest dose that is effective -- only to be found by trial and error for each person.
A better route might be to taper prednisone while beginning an alternative (cellcept, azathioprine...) if prednisone gives you problems.
Good Luck
My neuro asked me when he first diagnosed me if m eyes and hearing were very sensitive. He asked me if I was struggling to organize my thoughts, etc. Much like our sensitivity to heat and cold, all senses are sensitive. These are all symptoms associated with Fibromyalgia and Chronic Fatigue. I don't know if they've tested you for those issues
It's just a thought that came to mind. I hope it helps but I don't wish those issues on anyone and I'm sure that Barbel will agree.
Also, those symptoms would be worsened by rapid tapering of the steroids, I would think. But I could be wrong. I hope you feel better very soon. I am thinking about you. Hugs!
Angie
I do struggle with wanting to do everything!! And GUILT is my main demon Barbel :( Giving up work has been really hard and I almost feel I need to justify my existence and at least be productive and useful at home!!! I feel like I'm waiting for this to end so I can resume my life again...but 2 years into it again and I feel I am just wasting my life when maybe I should be accepting it as it is and working out what I can do with what I have??
I also appreciate the comments about my GP and agree he is not qualified to manage MG...in his defense, he took advise (I would assume from a local Neuro who probably knows as much as my GP!) who advised him of the quick taper?! I am scared to rock the boat with him and have the steroids taken away when they are the only things that help....even though I need a higher dose to keep things stable
My problem (and frustration!) is that I have a clinical diagnosis with no test to back it up....and the Neurologist who diagnosed me backed off away from the more aggressive treatments leaving everyone else wondering how solid this diagnosis really is?! So I am in this limbo....half diagnosed with LOTS of doubts!! I feel like I am risking the side effects of the steroids but being treated in half measures??? If that makes sense?! I understand the Doctors being wary but I have no real guidance or treatment plan....but I suppose they need a solid diagnosis to be able to proceed with confidence and the treatments are not to be taken lightly??
Angie, you are right about senses being heightened, smell, sight/light and noise can all seem too much at times!! Chronic Fatigue and Fibro haven't been mentioned.....but apart from Costochondritis (tender spot on sternum and ribs from Chest wall inflammation) I have no real pain?? I do get achey/sore hips if I try to do too much but nothing I take painkillers for??
The strange thing for me is that when I am feeling more stable on the steroids and have some confidence in my body and its abilities...my anxiety is greatly reduced and I feel much less irritable and much more able to cope.....I just wish I could stay that way. Whilst I can feel the symptoms lurking if I push things, I am able to balance rest with activity and think I could even get back to working and maybe even exercising if I built up gradually? But, once I get below 20mg a day.....the symptoms are a lot less stable and life is a combination of shorter,better periods mixed with weakness, heaviness and generally struggling to keep going! :(
Sorry to be doom and gloom....just feeling a bit lost right now. Thanks again everyone.
Eve.x
That means 20 controls the mg and I believe you should stay there until you stabilize and feel better for a while.
That is what I have done in the past and it works.
After you feel great for awhile then you can drop to 19 for a whiel and see how you do.
I was at 69 and I dropped slowly.
Now I am at 7. I have tried for years now to go to 6 but my symptoms come back.
I may try again soon but I like feeling well.
I have talked to people with RA who live on 29 to control their symptoms.
I have anxiety a lot. And life can wear us out causing us to feel overwhelmed.
DE stress how ever works for you. We are not normal so we have to make accommodations to feel as normal as possible.