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 hope you are all doing ok...I haven't been on for a few months and it seems like so much has changed...new members...and the shocking news about Elinor...I still can't believe it and feel awful I haven't been here.
I decided to take a break, try to focus on getting better after being left in a limbo, half diagnosed and on mestinon but a refusal to try steroids due to every test (inc SFEMG) not showing what the consultant wanted.
I feel like I have been poking around in the dark...60mg, 4xday of mestinon now does very little...so my GP suggested I maybe don't need it and so I tried coming off for a couple of weeks and though there wasn't a dramatic drop in my symptoms...it was definitely a relief to go back on it! For a couple of weeks and then the effects tend to fade again. I don't know whether I overdo it when on the mestinon and then it bites me in the bum later on? It just seems that mestinon only helps when I am doing very little...and preferably nothing but rest! I am too scared to up it to the 90mg 4-5x per day after being so ill in February and my GP saying it was a massive dose for my small frame. Maybe I should try a 75mg dose?
I went to a physio...who said I was way out of her depth and she was appalled that I have been left this way - she suggested I get an Urgent referral to the Neuro Gym. I asked about acupuncture and have been sent to a lovely lady who also cannot believe I have been left this way. I've been trying yoga...but my costochondritis (chest wall inflammation) can't take the floor work and my shaky legs can't take the standing work! I am also on nutritional shakes and STILL can't seem to get anywhere!!
I feel like I'm on a loop - I hit a dip, rest for a few days, gradually build up to a basic level over a few weeks, just start to think I might actually be getting somewhere and BOOM...back down into the dip...and usually worse than before!
These days on top of my striking facial droop, my legs get slower the more I walk and almost feel as if I am getting a dead leg/hip? (It's strange, no pain, just a sensation that I am losing the one hip as it dips as I walk and my thighs have a weak, shaky, deadness to them?!) My arms are heavy, even picking up the remote to hold to the TV feels a huge effort at times! My voice is constantly croaky once I have been talking for more than a few minutes...and most of all....I feel completely worn out! Like I am trapped in a body that doesn't work while my mind is still full of all of the things I would love to be doing!
Tomorrow I go back to my GP...who is very sympathetic but obviously will not go against the consultant on the steroids decision! My consultant is over 2 hours away and I feel the journey is a waste of his time...and my time and limited energy if he has already made up his mind? I would much rather spend that energy on my young children if it is only to be a wild goose chase! And so, I am going to ask my GP if he can speak to him for me...to clarify my diagnosis and why he objects to the steroids. I understand medicine is evidence based but the evidence is before their eyes...and without the tests my consultant was always convinced of my diagnosis! I hope my GP will plead my case and my desperation to not slip any further into this. I have already had to give up work and I don't see what else I can do? I need help....but I am not sure my GP will do this....and then I will have to make the long trip.
I fear that I will not get anywhere....I understand Drs are afraid of being sued...and who can blame them! But, I am 33 and refuse to accept that this is as good as it's going to get?!I have to be able to do something, right?? I can't just sit here and wait to get worse?!?!?! Right now I would sign any disclaimer they liked for a trial...and if it didn't help then I would never stay on them and chance the risks...but I would have tried.
I feel abandoned. The MG Charity here in the UK say that negative tests should not dictate diagnosis or treatment and I should be reviewed at least every 6-12 months even if I was well controlled...which I am not. I have a consultant who says I have "clinically possible Myasthenia with NO lab confirmation" and therefore he is not happy to trial steroids? I have a GP who feels that there are worse things than steroids to trial as a diagnostic tool...but obviously cannot go against the consultant. And every other person I meet cannot believe I am being left with no follow up or monitoring. Where do I go? What do I do?? Some people say to go back to my Neuro and try to plead, others say go to another? I am already on Neuro#2 and have no tests to back up my clinical picture (though I don't know if my all tests have shown something and are just not high enough for a positive test like my AcHR which is 0.12...as in the UK we don't get to see our results) so is another Dr really going to treat me beyond mestinon? Am I just looking for an answer which isn't there or an option that no Dr would risk?? To be honest, I get so stressed about going to the doctors now that I wonder if it is worth the stress and energy?
Anyway, sorry to waffle (and rant!) I hope you are all well and if any of you have any ideas or advice for me....I would be so very grateful!!
Thank you! Eve.x
I hope you are all doing ok...I haven't been on for a few months and it seems like so much has changed...new members...and the shocking news about Elinor...I still can't believe it and feel awful I haven't been here.
I decided to take a break, try to focus on getting better after being left in a limbo, half diagnosed and on mestinon but a refusal to try steroids due to every test (inc SFEMG) not showing what the consultant wanted.
I feel like I have been poking around in the dark...60mg, 4xday of mestinon now does very little...so my GP suggested I maybe don't need it and so I tried coming off for a couple of weeks and though there wasn't a dramatic drop in my symptoms...it was definitely a relief to go back on it! For a couple of weeks and then the effects tend to fade again. I don't know whether I overdo it when on the mestinon and then it bites me in the bum later on? It just seems that mestinon only helps when I am doing very little...and preferably nothing but rest! I am too scared to up it to the 90mg 4-5x per day after being so ill in February and my GP saying it was a massive dose for my small frame. Maybe I should try a 75mg dose?
I went to a physio...who said I was way out of her depth and she was appalled that I have been left this way - she suggested I get an Urgent referral to the Neuro Gym. I asked about acupuncture and have been sent to a lovely lady who also cannot believe I have been left this way. I've been trying yoga...but my costochondritis (chest wall inflammation) can't take the floor work and my shaky legs can't take the standing work! I am also on nutritional shakes and STILL can't seem to get anywhere!!
I feel like I'm on a loop - I hit a dip, rest for a few days, gradually build up to a basic level over a few weeks, just start to think I might actually be getting somewhere and BOOM...back down into the dip...and usually worse than before!
These days on top of my striking facial droop, my legs get slower the more I walk and almost feel as if I am getting a dead leg/hip? (It's strange, no pain, just a sensation that I am losing the one hip as it dips as I walk and my thighs have a weak, shaky, deadness to them?!) My arms are heavy, even picking up the remote to hold to the TV feels a huge effort at times! My voice is constantly croaky once I have been talking for more than a few minutes...and most of all....I feel completely worn out! Like I am trapped in a body that doesn't work while my mind is still full of all of the things I would love to be doing!
Tomorrow I go back to my GP...who is very sympathetic but obviously will not go against the consultant on the steroids decision! My consultant is over 2 hours away and I feel the journey is a waste of his time...and my time and limited energy if he has already made up his mind? I would much rather spend that energy on my young children if it is only to be a wild goose chase! And so, I am going to ask my GP if he can speak to him for me...to clarify my diagnosis and why he objects to the steroids. I understand medicine is evidence based but the evidence is before their eyes...and without the tests my consultant was always convinced of my diagnosis! I hope my GP will plead my case and my desperation to not slip any further into this. I have already had to give up work and I don't see what else I can do? I need help....but I am not sure my GP will do this....and then I will have to make the long trip.
I fear that I will not get anywhere....I understand Drs are afraid of being sued...and who can blame them! But, I am 33 and refuse to accept that this is as good as it's going to get?!I have to be able to do something, right?? I can't just sit here and wait to get worse?!?!?! Right now I would sign any disclaimer they liked for a trial...and if it didn't help then I would never stay on them and chance the risks...but I would have tried.
I feel abandoned. The MG Charity here in the UK say that negative tests should not dictate diagnosis or treatment and I should be reviewed at least every 6-12 months even if I was well controlled...which I am not. I have a consultant who says I have "clinically possible Myasthenia with NO lab confirmation" and therefore he is not happy to trial steroids? I have a GP who feels that there are worse things than steroids to trial as a diagnostic tool...but obviously cannot go against the consultant. And every other person I meet cannot believe I am being left with no follow up or monitoring. Where do I go? What do I do?? Some people say to go back to my Neuro and try to plead, others say go to another? I am already on Neuro#2 and have no tests to back up my clinical picture (though I don't know if my all tests have shown something and are just not high enough for a positive test like my AcHR which is 0.12...as in the UK we don't get to see our results) so is another Dr really going to treat me beyond mestinon? Am I just looking for an answer which isn't there or an option that no Dr would risk?? To be honest, I get so stressed about going to the doctors now that I wonder if it is worth the stress and energy?
Anyway, sorry to waffle (and rant!) I hope you are all well and if any of you have any ideas or advice for me....I would be so very grateful!!
Thank you! Eve.x
Have you had a sleep study? Mine showed a low level of oxygen drop and apnea related to REM sleep- the closest thing to a positive yet test in my journey. At least it could rule out other fatigue issues. A friend of mine who is tired all the time but very slim and fit found that her fatigue was due to sleep apnea.
Good luck and keep trying. If GP visit didn't go well, write a letter describing what you can no longer do and mail it in. Sometimes it is hard to get our point across when out of breath.
Flutebell
KEEP GOING, keep seeing new doctors. After 7 years of doctors I finally found out what it was, I honestly did not think I could make it another day, with more doctors and phone calls and waiting rooms and rude staff, I cried though it all. KEEP GOING and see a new doctor, if mestinon doesn't work they need to try something else. When we are sick being our own advocate is so awful and hard, but we are all with you on your journey.
The GP can do anything he wants, everyone is afraid of the liability. Get new doctors, ask the MG Charity if they have a volunteer advocate, find out who the specialist is in your area, find out who is helping people and go to that doctor. The most important thing I did was to leave the medical group, I went to a completely new private neuro, after 7 years of hell, and he knew what it was in 20 minutes, I am not kidding. Keep us posted and my thoughts are with you every day.
Many of us here struggled for years to get that far. So kudos to you for perseverance and determination and now you need to find someone with more experience who has the courage to help you.
I do not know if you have talked to anyone at the UK MG Association. This link has a listing of those assosciations in different counties. I think you are in the U.K.
http://www.myasthenia.org/LivingwithMG/InternationalMGorganizations.aspx
Often times finding someone who has found a doctor that has a lot of experience can lead you in the right direction. I have said before I am on neuro #6 and 7. IT takes a while to find the right help and I am not even sure if I am there yet but think I am close.
The last nuero got me to a very good doctor who is exceedingly good at giving SFEMG;s. I had one a few years back that was negative but I always wondered if it was done properly. The room was cold. The arm used was not my weakest arm. It was done quckly and on an arm not exercised. I just wondered if it was properly done afgter reading on our site here how important such things are as the person who gives it to you.
The 2nd one was done in a warm room on my weakest arm that was fatigued. The person giving the test is recognized by the American MG association as is the doctor who sent me to get the test. It was a completely different experience. This doctor had extreme knowledge and experience. This is what he does all the time and he is very good at it. The test actually took about 3 hours.
This in part to the fact it is hard to capture my pairings but in the end I had an abnormal test just like my daughter had a month before me.
We both are negative on all other tests.
So the next caution I would give you is to find someone with enough experience to recognize that there is such a thing as seronegative MG and that it deserves treatment. If you go to the MG association and make some contacts there you can query the papers written by neurologists they recommend and find ones who have written on this topic.
I have not found all my answers yet. It is a process. But I am so much closer now. I wish that for you too as we both need more tools to deal with our muscle weakness. In my case my current primary does not question my logic when I come to him asking for a referral. I do my research on doctors and he wants me to find answers too and realizes that each time I see someone new we get closer.
You have made progress and can build on that now if you find someone who has more experience. Good luck with this....and keep letting us know how things are going....Hugs, Marie
I saw my GP and to be fair, he was great. He is happy to refer me wherever I want to go but wants me not to get my hopes up as he seems to be a little disillusioned (or maybe realistic?!)about Neurologist and the current testing...and Doctors reluctance to go against the testing?!
So...long story short...he has started me on a months trial of Prednisolone at 25mg per day on top of 4-5 x per day of 60mg of Mestinon. I see him to review in a couple of weeks and then we decide our next move....I am so grateful to him for trying to help me!!!
I am just about to put a question on the main forum about the dosing, effects etc...so if I haven't taken up to much of your time I'd really appreciate any advice any of you may have! Thanks again!!x
And negative blood tests do not rule out disease. Positive ones rule it in. I have Lems and even though it can be very difficult at times because it is so refractory, at least having a firm diagnosis is kind of comforting.
I have been in the diagnosis limbo, but fortunately not so long. It can prey on your mind a lot. And that feeling of wasting all the time and effort to see yet another doctor who can't confirm anything is very trying on ones spirit. And being told it is all in your head is even worse! That does make you want to get on the couch and just forget it all.
Even if you have had negative results initially, it would be wise to repeat them periodically. I tested negative for Lems initially, and six months later was positive. Don't give up. Keep trying to get that diagnosis.
I know that very few of us have found a neuro and stuck with them for good. I know that you are on neuro number 2 but you absolutely MUST NOT STOP LOOKING. Especially if you aren't happy with the doctor or his treatments.
*******This is hugely important!!!!
Healthcare is a 50/50 partnership. The doctor is not God and should not be allowed to dictate what you do. The doctor is there to guide you. To provide you with a means to have the studies (repeatedly, if necessary), list ALL of the possibilities or differential diagnoses, and more importantly, give you a complete list of treatment options. They are suppose to advocate FOR you, not limit you or your options. Patient's always have a choice and if your dealing with a neuro that doesn't give you the option to participate in your care, you need to move on. No good can come from that kind of care.
Now on a positive note, you are back on DS and asking great questions. In my opinion there isn't a better place to be but with those who have lived through the same experience.
I would no longer waste my time with the 2 hour drive. I would contact that doctor (via email or snail mail) and let him know that you won't be back and for exactly what reasons. Be frank and firm but leave out the anger and frustration, if possible. Even if it takes you days to type/write it, send it as soon as you have found a more appropriate neuro. Make sure to request your records. I know from experience that those types of letters hit home with doctors. I've seen many of them in my 20 plus years in the field. I've seen it change how a doctor operates. If you want to steal my words or want help in constructing the letter, I'm happy to help. I sound a lot smarter than I really am when I write things down. That also gives you the chance to add and delete things when it's finished. Sometimes when you get done with it you realize how much your anger came through and you have to re-work it a bit.
My best suggestion yet is to interview your doctor before you commit to stick with them. I know it sounds like a big hassle but it's no different that hiring someone to come in and clean your house. You have to know that it is someone that you trust and can work with for many years to come.
Lastly, always take an advocate with you. We can't always articulate what we want to say. The issue is the anxiety and frustration fills your head and often pushes out the actual questions or point. Remember, we have brain fog (among other things) that works against us. Before your appointment you should review your expectations with your advocate. Let them know what questions you want to be asked, what you need to have before you finish with the doctor (Rx, referral, studies, etc.) and what to do in the event that your doctor is uncooperative with your requests. For example, one of my best friends really stinks at remembering what to ask when she goes to her PCP (luckily, he's my PCP too) Every time she has an appointment, I go with her. A few days before her appointment we have a nice long conversation about how she is feeling, any pains, aches or other symptoms plaguing her, find out what questions she has and what she hopes to get out of her appointment. I make a list of all of those items, including prescription refills needed, allergies and all of her medications. I put it in a To-Do-List form so that we can check them off as she goes. I give the list to her so that she can attempt to do it on her own. I'm there for back up and support. If there is anything that she wasn't able to remember or just felt too timid to request or ask, then I step up. I always have to keep in mind HER goals and concerns. I usually just say, "Oh, I think there were a few more things that you wanted to cover, would you like me to ask him about those?" Sometimes that is all she needs to get back to the list and other times she just gives me the go ahead to take it and run.
I don't know if anyone in your family is willing to do that for you or if you have a close friend that you prefer. It is helpful if they know the whole history of your condition and the things that you struggle with each day. It's also very helpful if they are medically inclined and can understand any information that is being thrown at you.
I hope this helps. I hate that you are still going through this after all you've been through already. My heart and prayers are with you. Please let me know if I can help you in any way.
Love,
Ang
The right expert will be the best advocate. An IVIG treatment and prednisone helped me improve DRASTICALLY, and it wouldn't have happened without my persistance in finding another doctor to work with.
Good luck
Gary
Do not give up I know it is very hard sometimes and you feel like no one understands you !! sometimes I have to take a deep breath and just say well it is time to piss them off again.
So good luck
Chuck
Thanks again to you all.....I am very grateful!x