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Diagnostic criteria
After three yearsnif symptoms and run around to numerous specialists I thought I had figured out my problem…MG. Saw a neuro muscular doctor, order antibodies and I was positive for AchR blocking antibodies. Negatice on the binding and modulating. Awaiting Musk and striated antibody results. Dr. Started me on mestinon 60mg three times a day. The results were remarkable for three or four days and sporadic since. I did take a photo of my face prior to and an hour after taking it on day one and it showed such improvement. Shared the photo with the doctor.
He started explaining how mild cases usually only need mestinon and so forth. I told him that isn’t doing the trick for me consistently. And he proceeded to tell me how bad the immunosuppressive drugs were. I told him understand that, I am in the medical field. Prior to this I had been put on prednisone three times in three years by varying doctors to shut me up. The improvement was drastic, almost 100% in only 10mg. Told the NM doctor all this. Since I am asking for more then mestinon he is now repeating all the antibodies and ordered a SFEMG. I am baffled. I thought I met the diagnostic criteria. I have droopy eyes and face/crooked smile, blurry vision, swallowing problems, shortness of breath, weak upper arms worsens with repetitive use. Pulse ox drops into the 80s. Severe fatigue.
I responded to mestinon and have antibodies.
My assessment was negative in his office, it was noon and I had taken my mestinon.
Do you think it is because I only have the blocking antibodies?
I am going to have the SFEMG but I also think at this point I don’t want to continue with this doctor. Here I sit on a holiday weekend feeling terrible and thinking he should have started me on prednsione.
Opinions welcomed and appreciated.
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19 Replies
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Michelle Regardless of what the single-fiber EMG test shows it seems clear — as you seem to have concluded — that you should be on prednisone. If a moderate 10mg dose of prednisone helped you as dramatically as you describe it makes no sense that you are suffering on ineffective mestinon.
For your information, I am also positive for AchR blocking antibodies, mestinon does not work for me, and 5mg prednisone does work.
Good luck. It seems a moderate dose of prednisone will help you. I hope so. If your current physician will not help, find a new doctor.
Tom
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Thanks Tom.
<p style=”text-align: left;”>I had the sfemg and it was normal , but do have two pairs of nerve fibers that were abnormal (three pairs is considered positive test) So the doctor who interpreted the test wrote something about possibly repeating. The repeat on my Achr antibodies were all within. Normal limits this time. However, my anti striated muscle antibodies are positive. Musk negative. Waiting to hear back from my doctor on what he feels the next step is. I think a CT of my thymus is in order in relationship to the anti striated muscle antibodies being positive, but we will see, what do I know, I am just a cardiac nurse. Depending on his response I may be looking for a second opinion. (I also self-administered the ice pack test and it was positive and sent him a photo)</p> -
Hi Michelle,
I have a very severe case of generalized MG, coming down with it 9 years ago. For me, IVIG has made all the difference in the world. No, I didn’t get my old life back, but what I have today isn’t that bad. I receive infusions four times every 28 days, plus take Mestinon four times per day.
Best of luck to you in coming up with the best course of treatment. I’ve never heard anyone speak about this, but there are some teaching universities that appear to do a lot of testing for MG drugs. Possibly you could go to one of them for their opinion. If anyone has gone this route, I’d love to hear if it has helped.
Robert
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I can only say that Prednisone has some bad side effects, like medically induced diabetic type II. i was on it for a few months up to 60mg at the end. I now take Cellcept instead. I don’t really know what it does but I take 1000mg morning and night plus 240mg Mestinon daily. I’m stable but get run down after doing any physical activity. I am positive for binding, blocking and modulating AChR but without MUSK.
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Thanks Jack, yes I am aware of those side effects, I actually did good with it, lost a little weight, normal blood sugar etc when I took it before, 10mg. But I do know there are side effects you can’t see.
Best wishes.
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Not sure where you live but you need a new doctor. Try to find one that specializes in MG. I was diagnosed in 2020 and have been on prednisone the majority of that time. Mestinon helped a little in the beginning . I was on IVIG for a little over 2 years. Started at every 4 weeks and then to every 3 weeks. I had to stop the IVIG to join a clinical trial but still on prednisone. I’ve failed cellcept and Imuran due to side effects. I’m now in a phase 2 clinical trial. I won’t know if I’m getting the drug or not until the end of August. But I can tell you that my symptoms are now worse than bei started the trial. I have to decide whether to stay with it or quit and try something else. Wishing you the best but please find another doctor. Im also in the medical field.
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Thanks Linda. This doc is listed as staff for MG clinic at a hospital, but he is young.
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I’ve been diagnosed with and lab tested for occular LRP4 – MG ( extremely rare) for the past 2 years. My doctor at the department of Neurology at University of California Davis ( who specializes in MG) – considers Prednisone, with all its drawbacks – still the front rank treatment for this disease. Mestinon never worked for me. Am currently on 10mg Prednisone daily only which keeps my eyelids open (they were entirely closed) and my symptoms in semi remission. My doctor, who is still urging me to reduce this dose gradually, said 10mg is considered a “generally safe” level and recently was able to have double cataract surgery ( I am taking own precautions, extra vitamin D, Calcium, ect ).
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Thanks Stuart. I read a book by a doctor who specializes in MG and he considers prednisone the back bone in treatment of MG. So sounds like you have a smart doctor.
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I’ve been treated for ocular LRP-4 MG (extremely rare) for the past two years. My doctor at the Department of Neurology at University of California Davis ( who specializes in this disease) considers Prednisone – with all its drawbacks – to still be the most effective treatment. My eyelids were entirely closed. Mestinon did nothing but within days 40 mg of Prednisone did the trick. Have tapered since to 10mg daily with my symptoms in semi – remission and although my physician wants me to slowly reduce further considers this dose to be in the “generally safe” range and I was able to have successful double cataract surgery recently ( I’m 72 years old).
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I have r/side droopy face too and that crooked smile.. I have it for years and don’t think it’s gonna improve. The drs don’t care since I am relatively stable. Mestinon does not help and he will not prescribe prednisone. I am willing to try anything at this point..
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Gina I understand your desperation, I too am willing to try just about anything.
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I would say that “objective” tests like SFEMG are not really that important for determining MG, and a neurologist who is WELL TRAINED should see the symptoms of MG immediately without any need for these tests. There are two explanations for your case: either the neuro is really not very good at it and tries to do it by “the book” or your case is really not that clear.
If you have clear-cut improvement with Mestinon after 1 hour, that speaks with very high probability that you have MG.
if you come to see a doctor with your symptoms controlled (by Mestinon), than it is quite possible that the doctor will not find MG symptoms. My doctor sometimes was not able to see any symptoms except for double vision (when looking to one side and following the finger).
Now the second part is whether you need or not to have immunosupressant treatment, even as simple as prednisone is another issue.
If Mestinon controls most of your symptoms and you can tolerate it well, it is wise to stay just on Mestinon and increase the dosage/frequency of it (I was taking up to 10-12 60 mg pills daily). 3 pills per day is a good starter, but you have a lot of leeway for higher dosage. You must understand that Mestinon is acting only about 45 minutes after taking and for no more than 3 – 4 hours, so the effect disappears completely after that.
What surprises me somewhat that you have low oxygen in blood. With MG, that is usually the case only if you are in crisis or close to it, and can not really breathe; it is one of the last symptoms to appear, and then it goes bad very quickly. Blurry vision, if it is double vision or “heavy eye” feeling (i.e. your eyes feel like they can not follow well moving objects, but without having double vision), is a classic thing of MG.
If you should try prednisone or not, is a difficult question, but if you do try it, you can expect relatively quick improvement starting from about 10 days and certainly after 30 days.
But remember, in general, the need for treatment for MG is mostly determined by how you feel and cope and not by objective tests. What is important is to exclude other possible conditions.
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I underwent SFEMG and it was negative with some abnormalities. Two pairs had high jitter. The doctor who performed it recommended possibly repeating in the future.
I redid my blood work.
Now all AchR antibodies are negative
Anti striated muscle antibodies are positive 1:160
Musk negative.
I self-administered the ice pack test and sent the doctor the photos because it looks positive to me.
Waiting to hear back regarding all of this.
Appreciate everyone’s input.
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Hi
I started with ocular and moved to generalized MG within 6-7 months. When I started my neurologist who specializes in MG put me on 60 mg mestanon 6 times a day. When that didn’t help she upped me to 90mg 6 times a day and that helped.
also when I have a day that’s going to be extra physical I can take 120 mg for that day.
prednisone IS a miracle drug, but for me it’s long and hard to wean off of it. I’ve been trying to wean off 10mg a day for several 3-4 months. Couldn’t get below 5mg without issues popping up. Now we’re try a new system and if it works I’ll be off prednisone sometime in July. I gain weight on prednisone and there are other issues with it so it really shouldn’t be the first drug to fall back on when the mestanon can easily be increased in dosage and number of doses per day.
best of luck to you!
Love and Light
Frank
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I added a photo to my account, me recently on the left and me when I was last on steroids Nov/Dec on the right. Hope you can see it. Havent figure out how else to add photos.
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Sorry to hear about your trials. There are a lot of hoops to jump thru but keep on going till they help you(to some extent) or they say there’s nothing they can do and give you a good, valid reason. The best to you, I’m on the same train.
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Thanks Paul.
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I have been on prednisone for over three years now, we started at a dose of 80 mgs. Once a day and am finally down to 20 mgs once a day. My mg symptoms are severe and hard to keep under control. I am also on Azathioprine and get ivig infusions every Friday. I had my thymus removed this past September. Because I have been on prednisone for so long I am suffering some of the side effects, such as steroid induced eczema, moon face, bone deterioration, weight gain, etc. prednisone is not something you want to be on long term, keep searching for the right doctor, there are other options as far as immunosuppressants. The longer you’re on prednisone the harder it is on your body please keep that in mind. Good luck!
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