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
With regard to your mestinon dose, it does seem to be a bit on the high side but we are all different. Because of that it's hard to say if that is too much for you individually. The best way to know for sure is to cut back your dose and gradually increase it until you feel you've reached your optimum level. You should do this under the guidance of your neuro though because the risks of doing this is that you will go through an exacerbation of your symptoms.
About the ice test, this test is actually used in general for ptosis and not just MG but those with MG improve at a higher rate than with other disease processes. I only say that because we did this on a patient today and it turned out that she has something called, "Miller Fischer Syndrome". That's an autoimmune disease also but I don't know anything about it. I have a little studying to do on that as it presents very similarly to MG and/or GBS. It was a very interesting case and I'm curious as to what other symptoms it shares with MG or GBS.
Anyway, that's my 2 cents worth. I hope that you will get some answers soon. Keep pushing for answers. I agree that some of the reluctance to accept a 'clinical diagnosis" may be due to malpractice law suits and sadly it will only get worse in the future.
Big hugs. I'm happy to hear that you are feeling more positive these days. :-)
Angie
It didn't take long at all. It was done by a neurologist who specialised in doing this test. He did some general testing on my nerves using small electrical currents then did the SFEMG. He inserted two needles one on my face near my right ear and the other on the inner edge of my left eyebrow. The first I hardly felt the second was no worse than a blood draw. They he ran a tiny electric current through which made my eye twitch very slightly. He left that running for a few seconds maybe 5 or 6 times? He finished my a couple of very brief tests on my arm (elbow to wrist) and leg (knee to foot). That was it. I was in there maybe 30 - 40 minutes tops? He said it took a lot less time that he expected as I was 'a very co-operative patient' - what ever that means!
I'm in the UK - so it seems we are very clued up to MG here. Time from neurologist's appointment (having no clue what this was) to having tests complete is maybe 6 weeks. Antibodies and an SFEMG were the tests of first choice here.
I had the EMG last year and thought it was a SFEMG but My Neuro said the SFEMG takes up to an hour just on the face and something about needing to test 10 pairs of muscle fibres in the same area (this is my very basic understanding of it! Lol!!) he said they are hard appointments to get as carpel tunnel etc take 10mins and this needs at least an hour! On my EMG they tested just above either side of my eyebrow and my lip a couple of times each along with legs, arms and neck but they included Repetitive Nerve Testing too so I had some of the stimulation too.
Do you know where you go from here?? Have you another appointment or have you been referred on?? x
They did some other testing - not sure what it was but they applied an electric current (no needles) that made my toes the whole foot 'twitch' and likewise for my fingers and then hand. The final test they did after the SFEMG used needles and they had me contract the muscle(s) at the same time. Sorry it sounds a little vague. I'm sure it was an SFEMG as the neuro doing the test said it was a test that was very specific to MG.
I am in N Staffordshire so I was at the University Hospital of North Staffordshire. I'm under Dr Al-Araji (and also Mr Jasani, neuro-surgeon).
http://www.ccjm.org/content/80/11/711.full.pdf+html
I have had SFEMG, EMG nerve conduction studies and RNS - repetitive nerve studies and overall they are more boring than anything else and can take an hour or so. So far the most uncomfortable part is the very fine needle (thinner than a human hair) as they move it around to find the right nerve / muscle pairs can produce a sensation of a little pressure, not really pain per say but its not a tickle either. But being a wimp with a low pain threshold I find these procedures quite tolerable.
Overall I would not worry about the procedure too much other than it can last a while and its not really painful at all. I would imagine you could take some Tylenol (Paracetamol) before the procedure which might help, but it really is not too bad at all.
Overall its a good set of tests and if it helps the diagnostic procedure its well worth a few odd sensations to get your treatments going.
Best of wishes :-)
Joe