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're all well and had a lovely weekend :)
Thank you so much for the hugs and comments on my last post....I have had a couple of days to mull it over and I am feeling a (little!) more positive. I have decided (If I can find my strength and hold my nerve!) that if my neuro goes back on his word that I will put my case to him and fight my corner.... as I figure I will have little to lose by that point!
My neuro wants "further evidence to support Myasthenia" and so my question is - why is the Ice test NOT considered a positive test and why does it carry no weight in the diagnosis game?? From what I have read (and I may be wrong!) The Ice Pack test is Specific to Myasthenia and based on scientific mechanics of the disease - I know you need a visual marker such as facial droop to be able to gauge the results but where that is present it is considered a very sensitive test with no real false negative/positive results??
I understand that the antibody tests are very helpful in diagnosing....but with the LRP4 antibody on the horizon how can anyone be discounted without the AChR or MuSK antibodies until they have identified what percentage of seronegatives have the LRP4 and what the implication of those antibody are? Also, there may be more antibodies and until those have also been identified and accounted for....how can anyone be discounted?? And then there are those of us with the antibodies present but not in enough volume to constitute a "positive" result and I find that odd - if someone is tested more than once and repeatedly shows levels in their blood surely "Lab Error" can be discounted and credit for those antibodies should be given if the clinical picture is there??
I also understand that EMG/SFEMG are very good tests BUT there seems to be increasing questions over false negative tests and the reliability of these tests - so should a negative test discount MG?
My neuro told me himself that years ago someone would have been diagnosed on clinical picture alone as these tests were not yet available and that the tests are not always correct. He has also said that my clinical picture is clearly Myasthenia and the pictures of my "Ice Pack Test" show a marked improvement consistent with Myasthenia.....so I assume years ago I would have a solid diagnosis???
Please don't misunderstand me, I'm not bashing the tests, I just wish there was a complete picture here, an actual definitive test that applies to everyone so that all of the variables and unknowns weren't in play! (Yes, I know I am being VERY idealistic here! lol!!) I completely understand every precaution needing to be taken before Steroids or aggressive treatments are considered - lets face it NONE of us wants the risk and side effects. And, I am praying that my SFEMG gives me some sort of confirmation that MG is the culprit before I agree to those risks BUT at the end of the day, I just want to get on with my life without this becoming my life (if that makes sense?!)....and right now, that's just not happening!
I just feel frustrated that diagnosing Myasthenia is like trying to fit everyone into a nice, neat little box....but they haven't actually finished making the damn box yet?!?! lol!!
Thanks for listening to me rant.....again! Please let me know if you know why the Ice Pack Test seems to be discounted so easily.....and if you have any other views on the other tests?
Thanks everyone :) x
Thank you so much for the hugs and comments on my last post....I have had a couple of days to mull it over and I am feeling a (little!) more positive. I have decided (If I can find my strength and hold my nerve!) that if my neuro goes back on his word that I will put my case to him and fight my corner.... as I figure I will have little to lose by that point!
My neuro wants "further evidence to support Myasthenia" and so my question is - why is the Ice test NOT considered a positive test and why does it carry no weight in the diagnosis game?? From what I have read (and I may be wrong!) The Ice Pack test is Specific to Myasthenia and based on scientific mechanics of the disease - I know you need a visual marker such as facial droop to be able to gauge the results but where that is present it is considered a very sensitive test with no real false negative/positive results??
I understand that the antibody tests are very helpful in diagnosing....but with the LRP4 antibody on the horizon how can anyone be discounted without the AChR or MuSK antibodies until they have identified what percentage of seronegatives have the LRP4 and what the implication of those antibody are? Also, there may be more antibodies and until those have also been identified and accounted for....how can anyone be discounted?? And then there are those of us with the antibodies present but not in enough volume to constitute a "positive" result and I find that odd - if someone is tested more than once and repeatedly shows levels in their blood surely "Lab Error" can be discounted and credit for those antibodies should be given if the clinical picture is there??
I also understand that EMG/SFEMG are very good tests BUT there seems to be increasing questions over false negative tests and the reliability of these tests - so should a negative test discount MG?
My neuro told me himself that years ago someone would have been diagnosed on clinical picture alone as these tests were not yet available and that the tests are not always correct. He has also said that my clinical picture is clearly Myasthenia and the pictures of my "Ice Pack Test" show a marked improvement consistent with Myasthenia.....so I assume years ago I would have a solid diagnosis???
Please don't misunderstand me, I'm not bashing the tests, I just wish there was a complete picture here, an actual definitive test that applies to everyone so that all of the variables and unknowns weren't in play! (Yes, I know I am being VERY idealistic here! lol!!) I completely understand every precaution needing to be taken before Steroids or aggressive treatments are considered - lets face it NONE of us wants the risk and side effects. And, I am praying that my SFEMG gives me some sort of confirmation that MG is the culprit before I agree to those risks BUT at the end of the day, I just want to get on with my life without this becoming my life (if that makes sense?!)....and right now, that's just not happening!
I just feel frustrated that diagnosing Myasthenia is like trying to fit everyone into a nice, neat little box....but they haven't actually finished making the damn box yet?!?! lol!!
Thanks for listening to me rant.....again! Please let me know if you know why the Ice Pack Test seems to be discounted so easily.....and if you have any other views on the other tests?
Thanks everyone :) x
Personally I would think the ice pack test is a bit more clearcut, but this test can more easily suffer from the 'test effect'. The test affect occurs when we as the patients generally unknowingly affect the outcome subconsciously, it is possible with certain degrees of ptosis to alter the amount we show and this can happen without us knowing it, because we want that test to be positive. I will be very careful to say that the test effect is not a voluntary reaction, but often is driven by our subconscious thoughts.
The doctoes know these facts and have to take them into account and make sure that they can say with all of the data that MG is a valid diagnosis, especially if that means subjecting that patient to powerful immune suppressant drugs and major surgery like thymectomy. I can to a degree understand wanting to make sure the diagnosis is proper.
This I believe is the art of medicine and I have noted that not that many of the physcians are that good at it. Many want pure facts and science when those facts just may not exist, but unfortunately the disease truly does, thats where the problems really begin for the patients.
As I read back on this discussion, I want to point out Bweeds letter that she recently posted that was submitted and published, her note addresses a lot of the frustrations that the patients truly face as we try to get a valid diagnosis and most importantly approprite treatments.
Thanks for bringing this up Unsure, its a good topic to talk about
Joe
I could be resentful of all those years without diagnosis, but what I really wish I knew once I had seen the neuroophthalmologist, is the fallacy of the statement that the treatment was worse than my disease. MG was interferring with the life I could have been living and was progressing, something that was hard for him to see. I was satisfied to know what was going on and it was another five years before treatment, certainly not wasted, but you are younger and fortunately better informed. As Joe says, Medicine is an art as well as a science and much of the practice has to be without all the facts laid out--very seldom do we have "proof." b.
The question as I see it is of treatment.
Apparently doc don't want to treat a decease unless they are sure a person has it.
The question is
Do you want to treat this disease as mg?
If you do.....request treatment for mg. And state why. If your doc won't do it.....I guess your only option is to find one that will.
We have to take charge. We are accountable to ourselves.
Did your body respond positively to mestinon?
Don't worry Ann, there's so many of us with so many stories here!! Yes, I had an amazing response to mestinon for 3months at 60mg 4xper day but then my Disney trip threw everything into uncertainty - my mestinon isn't as effective as it was and sometimes fails to kick in when I am really not feeling well. My Neuro has upped my dose to 90mg 4-5 x per day but I am currently only taking 60mg 5xper day as I was worried it made me worse....I am going to gradually build up now I am improving again and am hoping I have had a virus or something that knock me off my feet this last month!
Another point to mention here I suppose is - would a Dr prescribe that dose (my GP feels it is a "massive dose") if he wasn't as sure as he could be that MG is the cause??
Thanks again everyone :) x
Wishing you LOTS of luck for your EMG!! I really hope and pray you get a diagnosis....and can just concentrate on what treatment you need to get better! Will be thinking of you, let us know how you get on - I'll be keeping everything crossed here :) x
http://m.ccjm.org/content/81/3/144
How do you feel about the result?? When do you get your results of you blood tests? The waiting is just the worst I always think!! Bless you, sorry to keep asking you questions I was just really hoping you'd have an answer today :( x