Thanks for this post- I will be looking at the replies, although I really don't see how you are still in this boat with high AcHR antibody levels?!?!?!?!?!?!?

I am only diagnosed by response to mestinon and clinical symptoms....double seronegative and clear NCS/EMG! I have been on mestinon since September and was getting on really well until the start of December when I took a long weekend away and I have been struggling since!! MY neuro said if mestinon stopped working I would need a SFEMG before they considered further treatment....which make his MG diagnosis seem a little pointless - I get that he wants to be sure before trying the harsher treatments but if he believes I have it (and he said the trial of mestinon is the equivalent of a "long tensilon test") then why can't he just treat me for it so I can try to get on with my life without this becoming my life?! (IF that makes sense?!) I have sent him a letter telling him of my struggles and asking if there is anything else that can be done without more tests......I seriously doubt he will but I am scared to go back and have my diagnosis scrutinized, or worse removed, because of these flawed tests!

Sorry to rant on your post, you must be just as frustrated, if not more with having the AChR antibodies!! Good luck, I'll keep an eye out for how you get on.....would you consider a second opinion??

Eve :)

I've had about 10 other opinions in all different fields. The neuro ear, nose, and throat specialists are the only ones that picked up something wrong with my eyes (slight up beat nystagmus and saccadic eye movements) through VENG testing which tests eye tracking. This has nothing to do with balance. Out of the three neuro opthalmologists, retina speciaist, and regular eye doctor, no one could see anything which makes me suspicous of their ability to test eye problems outside of your basic follow my finger, what color is this letter, and can you see this clearly. It's a joke to me. The only thing we have is MG antibodies, and some slight delayed Evoked Potentials on the right side but still in the normal range. My intention of all of this is to build a medical case to disprove any kind of doctor that says there's nothing wrong in case of disability. I have enough diagnostic test results to prove otherwise, but I want to AVOID disability if I can. It's just getting too hard to function. People at my work always ask me if I want a magnifying glass because of how close i sit to the computer. They don't realize it's not a blurred vision issue, more of a disortion of movement issues, which is wacky and not right. To me, it's a bilateral eye muscle issue (MG), or a brain issue which we can't find. MY eyes have never been the same since April. I've been frustrated for a long time. I did have one neuro say that I might only have the ocular form over the summer because the SFEMG was negative. She obviously doesn't know what she is talking about or has enough experience with MG if she relies just on the SFEMG for generalized MG.

I really feel for you - its all so unfair!

You mentioned your neuro is/wants to test for small fiber neuropathy - how is that done??

I don't really have any eye symptoms beyond drooping eyelids - my eyesight is increasingly blurred on my right side - which seems to be most affected in all other symptoms, but I am putting that down to "normal" deterioration. The only problem I have that if I look up/down/side for more than a second or 2 its like my eyes get stuck, feel strained then take a few seconds to focus back in properly......and some times the room spins if I try to track and object (like a moving car) or scan a room side to side quickly.....does that make any sense?? I was told in my teens by an optician that my eyes struggled to adjust focus from long to short distance, which I assume is common, and I assume this is just a deterioration of that?

Sorry again to hijack your post - you just seem likely to have the most knowledge of eye issues as I have seen your battle over the months....and hopefully this will keep your post at the top and others will jump in with answers to your original question!

Eve :)

There is nothing logical about the situation, and SFEMG was a waste of time and money and, moreover, landed you in in the ever preposterous dealing with treatment of MG. I would write to neuro's to find one willing to treat you adequately. Denying proper steroid treatment is potentially inviting progression, for which your current doctor should be held accountable. Good luck to you.

The sad part about this post and others that are having such a difficult time in having someone diagnosis them correctly and/or act on the MG with some expertise in their field is frightening. The idea that there are so many doctors and hospitals that just don't know much about MG, and therefore are not actingfast enough on proper treatment and that's scary! Therefore, so many are suffering for so long, and shouldn't have to be. Yet, there are doctors and hospitals that specialize in MG and that's the magic wand, stumbling across that one neuro that knows what to do in our best interest. I pray you find someone quickly to help you! Fortunately, I was diagnosed within 2 weeks. Cat Scan showed I had a thymoma, so surgery is scheduled, had a very high count of AChr antibody levels, put on Pretinzone & Mestinon, hospitalized for 11 days with 5 ampheresis treatments. I came out feeling really good, and getting ampheresis 2x a week up to surgery, coupled with meds. So, I feel pretty good most times, looking forward to getting thymus gland removed. My neuro seems to believe from his experience and expertise, that once removed that will be a major hurdle, and getting me on a manageable regime of meds as needed, I should be on the right track to remission. So, again I beliee finding a good neuro is key to managing this MG~

second opinion with someone who has much experience and specializes in neuro muscular diseases at a major educational facility definitely seems to be in order.
Ann

I agree with Elinor, I also am concerned about the progression of MG without proper treatment. You might just ask your neuro about progression and see what he says. I am sorry that you have had such a hard time. Keep us posted.

I totaly agree you need a second opinon thank good ness the V.A. sentme to my current neuro when I had my first crises he put me on high dose prednison and has been great !!! If he does not have an answer he tells me because like he says each is differant so we will just have to see where we can go!!!
Good luck and yes 9 months Is way to long!!!
Chuck

Thanks guys, I was just venting. I normally sit back and see everyone kind of talk about things and don't say a whole lot. I just need a post to get my feelings off of my chest. It's a new day so I'll did with today and try to plan for tomorrow. I've gained some wait the past several months because I am not physically active. I don't eat the best either so I am going to need to come up with a plan to start reducing my weight but I need the energy and strength to do so. I know some of meds cause weight gain too.