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'm heading to my neuro on Thursday (2 hours drive away) for "followup". This was after a 49 week wait for MuSK and LEMS antibodies coming back negative. AchR negative too and EMG and SFEMG also negative.
I had a "Lazarus effect" when starting Mestinon and her referral notes to my GP say she isn't sure I actually have MG but was fine to keep me on Mestinon while we waited for MuSK/LEMS results. This past 15 months on Mestinon have given me my life back, to a large extent. With careful dosing of it I can cross-country ski, bike, play my flute and handbells. But I am gradually getting weaker and Mestinon's effects are shorter and less pronounced.
How have others approached their appointments when you think the doc might just discharge you? I'm hoping I can ask for a muscle biopsy as I do have some symptoms that might be caused by a mitochondrial disorder. Does Mestinon work for anything else so dramatically? I did a 24 hour no Mestinon test Friday and it wasn't as bad as I expected. I did have achy hips and lower back. I walked a block for lunch with my husband and got lightheaded with eating and talking. My heart rate was over 120 on the walk back to work and my legs felt heavy.
Could the Mestinon just be keeping my heart rate lower and making me feel better? I had several episodes of tachycardia before MG/Mestinon. My sleep doc thought the elevated heart rate was related to my slightly elevated CO2.
I want to practice a short speech for all various responses as I tend to freeze up and not say anything when shocked - like when she first said "It might be myasthenia gravis" and I had been told several times that it definitely wasn't. I will remind her that she said there are probably 100 antibodies causing MG and we can only test for a few. If I had shown up decades ago I would have had the tensilon test and started meds and been assumed to be an MG patient.
Thanks for reading and any advice you can give.
Flutebell
I'm heading to my neuro on Thursday (2 hours drive away) for "followup". This was after a 49 week wait for MuSK and LEMS antibodies coming back negative. AchR negative too and EMG and SFEMG also negative.
I had a "Lazarus effect" when starting Mestinon and her referral notes to my GP say she isn't sure I actually have MG but was fine to keep me on Mestinon while we waited for MuSK/LEMS results. This past 15 months on Mestinon have given me my life back, to a large extent. With careful dosing of it I can cross-country ski, bike, play my flute and handbells. But I am gradually getting weaker and Mestinon's effects are shorter and less pronounced.
How have others approached their appointments when you think the doc might just discharge you? I'm hoping I can ask for a muscle biopsy as I do have some symptoms that might be caused by a mitochondrial disorder. Does Mestinon work for anything else so dramatically? I did a 24 hour no Mestinon test Friday and it wasn't as bad as I expected. I did have achy hips and lower back. I walked a block for lunch with my husband and got lightheaded with eating and talking. My heart rate was over 120 on the walk back to work and my legs felt heavy.
Could the Mestinon just be keeping my heart rate lower and making me feel better? I had several episodes of tachycardia before MG/Mestinon. My sleep doc thought the elevated heart rate was related to my slightly elevated CO2.
I want to practice a short speech for all various responses as I tend to freeze up and not say anything when shocked - like when she first said "It might be myasthenia gravis" and I had been told several times that it definitely wasn't. I will remind her that she said there are probably 100 antibodies causing MG and we can only test for a few. If I had shown up decades ago I would have had the tensilon test and started meds and been assumed to be an MG patient.
Thanks for reading and any advice you can give.
Flutebell
I understand your apprehension about your appointment. I never react to shock right away either, I always think about it later and wish I had responded differently. I'll be thinking about you on Thursday. Let us know how it goes. Big hug!
Although mestinon is primarily used for MG, there area few other uses -- constipation, positional BP changes, and some neuropathic diseases can be treated with mestinon--and probably more off label uses.
Mestinon lowered my heart rate too and my blood pressure and surely did prevent constipation. It even improved my dry-eye condition.
Your thought that part of the value of mestinon may be heart rate effect is worth testing some more. You might ask the doctor if there is a substitute medication for the tachycardia to test. You could do a few more of the experiments where you skip mestinon and check your heart rate and blood pressure to see what happens and how you feel.
Our own insights and self checks are valuable. Our doctors only see us a few minutes every few months and mostly depend on what we tell them anyway.
Good Luck!
I had to wait 18 months for this specialist visit. I've been to a support group for MG folk two hours the other direction and they say their docs are not good people persons. So I'll have to convince this one to keep searching.
I took your advice, Rhanson, and took my oxymeter to the skating event I had today. I took 30mg of Mestinon before hand and got very lightheaded after 15 minutes and had to stop. I checked the meter -oxygen 98% and pulse only 82. So the Mestinon is keeping the heart rate down but not preventing the lightheadedness- maybe high CO2?
I also realized how dry I am on my Friday test day. I have a tentative Sjogren's diagnosis so the dry eyes and mouth were definitely worse in only a day. It has been a while since I've woken up with my tongue stuck to the roof of my mouth!
My self-research continues! It helps to be able to tell docs I trained as a biochemist so they seem to give me more leeway when I explain my experiments. I'm a very visual learner so have made an Excel chart showing strength rising and falling over the last 8 years. As my line dropped downwards in 2013 I figured I'd be off work on disability within the year. I'm hoping this visual will help make my point on Thursday.
Flutebell
Hth
Carly
I'm afraid I don't have advice, just my own anecdote. After a couple of years of symptoms (and being treated by an integrated medicine clinic that never considered autoimmune issues or doing a basic neuro test), the first neuro I saw diagnosed myasthenia on the spot based on symptoms, history, clinical exam, and family history of autoimmune disorders. He ordered the labs for ach and musk antibodies, but I started having problems breathing and swallowing before the results were back so he started me on prednisone, mestinon, and ordered a chest MRI. The MRI found a hyperplastic thymus, which in my neuro's mind confirmed the MG diagnosis. Later, my antibody tests came back negative, as did sfemg (though the testing for that was not handled well). If my doc had never done the MRI, he may very well have second guessed the diagnosis - typically that expensive test isn't ordered unless MG is confirmed. Now, I had a thymectomy and it helped a lot. Mestinon doesn't always work for me, but there are for sure times it is like magic. Whether I have a yet to be discovered antibody causing my MG or something else is going on, this diagnosis and the treatments for it seem to be the best result I can hope for at the moment. It does always explain my symptoms. But that's just one woman's experience. :)
I've been doing a lot of lupus reading and that has temporarily been on the table several times. I actually showed family doc my mild neck rash in November and said I thought it was from the fluorescent lights - he looked at me as though I was crazy. Time for him to Google lupus light sensitivity! Not butterfly rash here but have had sporadic protein in my urine before.
I'll keep my myasthenia gravis emergency bracelet for now as a crisis could still be a possibility and I'd need aggressive treatment quickly. But it would be interesting if I get a lupus diagnosis and start steroids which would probably fix the calcium problems and muscle weakness at the same time.
Flutebell