[teelae]

My symptoms are not everyday. I initially had an AchR binding ATB which was 1.39, then a couple months later I had 2 neg AchhR binding ATB. My new neuro told me that since I only have intermittent blurriness of vision, no ptosis, only now and then muscle weakness, and no end of day muscle fatigue, that I probably do not have MG. When he did the clinical muscle pushing with his hands on my shoulders, legs, thumbs (repetitive) I showed no muscle fatiguing. I get blurriness now and then, my muscles get tired (brushing my hair), walking. But I dont have it all the time. He said that MG fluctuates in a DAY, not one day here and one day there etc. I was within days of a thymectomy and I cancelled it to get this second opinion. He also said that with MG you have ptosis and I do not. He also said that you cannot go from a positive to a neg AchR binding. Only if you have a high titer, it can decrease, but it never goes to a negative. He feels that my original 1.39 was an error, and I should not have been positive. My first neurologist says I have it, now this one says I don't. My thymus is just residual tissue, not hyperplastic. My swallowing is fine, but my throat kind of closes up with cold drinks, and sometimes it takes forever in transit time when I eat something like broccoli - it gets kind of stuck in my lower esophagus for hours. Again, my neuro said if you have swallow/throat MG it is all the time, not intermittent days at a time in between episodes. I have no trouble with swallowing in general. Sometimes I get short of breath when I have to talk louder than normal, it will wear me out, but again it is not all the time,. Can you guys give me some insight and input in all of this. I am more confused than ever now. I don't know which neuro to believe. Teelae

[Stellatum]

Hi. I'm really not sure whether to answer this, with my half-knowledge, or whether it would be better not to say anything at all. But with that caveat, let me say: I think you need to find a neurologist who specializes in MG.

I have heard of many cases in which people who test negative for the antibodies at first test positive later. I don't know if it can go the other way, too, but I don't see why not. Have you had a single-fiber EMG? That's the test they do when they're not sure of your diagnosis. Many of us here, including me, have been diagnosed with MG even though we have negative antibodies (I have tested negative three times). We are diagnosed on the basis of the SFEMG, or just on symptoms.

I have never had ptosis. As for the muscle testing they do in the office--well, I think that depends how it's done. Two of my neuros could never get that to show anything with me, but the third made me sustain the pushing until the muscle gave out. I myself was surprised to see it give out--I hadn't noticed any weakness in it.

As for the "MG is never intermittant" thing--I'm very doubtful about that. All of us here will tell you we have good spells and bad spells. For the first year, I had weeks at a time when I had hardly any symptoms. Even now, I have "much better" and "much worse" days, and a spell of either can last a week or even two. As for the trouble swallowing: your neuro needs to meet me. I have no trouble swallowing most of the time, but if my symptoms are getting bad, then I start having trouble swallowing.

I'm afraid I have the impression that the neuro who said all of this doesn't have a lot of experience with MG. He seems to know about "textbook cases," but very few of us are textbook cases. Your local chapter of the Muscular Dystrophy Association can give you the name of the doctor in your area who specializes in MG, but you may have to travel. I live in Rhode Island, but I got finally diagnosed by a doctor in Boston. My local neuro specializes in neuromuscular diseases, so he's the best local guy for MG: but when my antibodies kept coming back negative, and my symptoms were so atypical, he sent me to a neuro in Boston who has seen 800 patients with MG.

At the very least, you should have the SFEMG!

I'm so sorry you're going through this uncertainty, which is just brutal.

Abby

[busybusy]

I am sorta like Stellatum. I have good days and bad days. I have swallowing problems on occasion. It is not everyday. The last bite of food will get "stuck" and stay there for several hours. I get choked more easily now especially when I am drinking water. My blood test came back positive twice, but I don't know anything other than they were positive. My dr. never discussed details about it. I had the single fiber EMG and it showed abnormalities so I got the diagnosis of MG. I don't have the double vision or ptosis. I do have one drooping eye but that runs in my family. It does not droop to the point of being closed but looks lazy. I have some blurred vision ever so often especially at night or trying to read and sometimes that is according to how tired I am. I just keep blinking until it clears up. I can feel your frustration, but my MG is on and off from day to day. Last week I would work and then come home and do some house cleaning and in a few days I was "whipped." The next few days I did not even feel like carrying on a coversation. I was so exhausted. My neuro does the muscle pushing but I have to do something for a while for me to give out. A few pushes here and a few there is not enough to show weakness for me. I had a severe case of hoarseness before diagnosis. Now when I take my medicine I can tell a big difference in the way I feel and I am now getting my own voice back. Still can't sing. Sounds terrible. I did have shortness of breath when I exerted myself before I started my medication. I would give out just carrying on a conversation. I have never had a MG crisis. One thing that was beginning to bother me is I started falling. I was playing kickball before diagnosis and feel twice for now reason. I could be standing still and hit the ground without any warning. I went walking one day and there I was on the ground again. That is the first reason I saw a doctor. Everything else just sort of fell in place. He was very smart and he is a good person as well as a doctor. It is according to how full my day is that usually tells what the next day will be. If I exert myself a lot staying busy, then the next day I usually am very tired. It will take rest over several days to get back to what I call "normal." Hope this little bit helps you and I hope things will work out for you. It took more than a year to get my diagnosis but I can look back and see that I was having these problems for several years and most would chaulk it up to depression. Take care. busy

[teelae]

Originally Posted by teelae

My symptoms are not everyday. I initially had an AchR binding ATB which was 1.39, then a couple months later I had 2 neg AchhR binding ATB. My new neuro told me that since I only have intermittent blurriness of vision, no ptosis, only now and then muscle weakness, and no end of day muscle fatigue, that I probably do not have MG. When he did the clinical muscle pushing with his hands on my shoulders, legs, thumbs (repetitive) I showed no muscle fatiguing. I get blurriness now and then, my muscles get tired (brushing my hair), walking. But I dont have it all the time. He said that MG fluctuates in a DAY, not one day here and one day there etc. I was within days of a thymectomy and I cancelled it to get this second opinion. He also said that with MG you have ptosis and I do not. He also said that you cannot go from a positive to a neg AchR binding. Only if you have a high titer, it can decrease, but it never goes to a negative. He feels that my original 1.39 was an error, and I should not have been positive. My first neurologist says I have it, now this one says I don't. My thymus is just residual tissue, not hyperplastic. My swallowing is fine, but my throat kind of closes up with cold drinks, and sometimes it takes forever in transit time when I eat something like broccoli - it gets kind of stuck in my lower esophagus for hours. Again, my neuro said if you have swallow/throat MG it is all the time, not intermittent days at a time in between episodes. I have no trouble with swallowing in general. Sometimes I get short of breath when I have to talk louder than normal, it will wear me out, but again it is not all the time,. Can you guys give me some insight and input in all of this. I am more confused than ever now. I don't know which neuro to believe. Teelae

Thankyou to you both for your reply. The 2nd neuro I saw was supposedly the head of the neuro clinic for myasthenia here at the university. I cannot deny my symptoms, and I know this disorder is not textbook for everyone. What you guys said is like my symptoms in several ways, so what do I do from here? I am scheduled for the EMG thing on the 21st, however my understanding is that it is not always diagnostic. I suppose I will just have to wait it out and wait for the symptoms to worsen. My diagnosis was in October. I don't know whether to put MG on my medical alert even. Confused.