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...
Hello everyone,
I've been searching for about four years for the cause of my muscle weakness, worsened by exercise. I saw a neurologist in 2009 who did basic EMG and said I didn't have MG and needed to talk to a therapist.
I've had two trips to the ER in past four years with difficulty breathing. Chest xrays and CT normal but just a little low on potassium. My family doc sent me to a neurologist (1.5 year wait!) who ran a lot of tests. I have negative AchR and SFEMG but an amazing Mestinon response - a "Lazarus effect", as described in my referral letter to family doc.
Has anyone else had all tests negative (except +ANA) and finally been diagnosed as MG? We are waiting for government (in Canada) to approve MuSK testing.
I have other autoimmune diseases (celiac, thyroid, Sjogren's, a calcium disorder no one can diagnose) so having MG is a bit scary but at least it is a probable diagnosis. I can now cook, clean, drive more than 20 minutes without dizziness and even cross-country ski! I was using a walker and preparing for disability from work before the Mestinon (60x3 with minimal side effects as they counteract the Sjogren's symptoms).
I'd love to hear stories of those with atypical paths to diagnosis. I had one eyelid droop a little five years ago when electrolytes were off balance but no ocular symptoms now.
Flutebell
I've been searching for about four years for the cause of my muscle weakness, worsened by exercise. I saw a neurologist in 2009 who did basic EMG and said I didn't have MG and needed to talk to a therapist.
I've had two trips to the ER in past four years with difficulty breathing. Chest xrays and CT normal but just a little low on potassium. My family doc sent me to a neurologist (1.5 year wait!) who ran a lot of tests. I have negative AchR and SFEMG but an amazing Mestinon response - a "Lazarus effect", as described in my referral letter to family doc.
Has anyone else had all tests negative (except +ANA) and finally been diagnosed as MG? We are waiting for government (in Canada) to approve MuSK testing.
I have other autoimmune diseases (celiac, thyroid, Sjogren's, a calcium disorder no one can diagnose) so having MG is a bit scary but at least it is a probable diagnosis. I can now cook, clean, drive more than 20 minutes without dizziness and even cross-country ski! I was using a walker and preparing for disability from work before the Mestinon (60x3 with minimal side effects as they counteract the Sjogren's symptoms).
I'd love to hear stories of those with atypical paths to diagnosis. I had one eyelid droop a little five years ago when electrolytes were off balance but no ocular symptoms now.
Flutebell
My neuro was fine to dx without positive antibody tests b/c of the effect Mestinon has had. They can do a repetitive nerve stimulation or a SFEMG as well to help pinpoint the diagnosis, but these are not always positive either. Thankfully, you at least have mestinon to lean on. :)
Carly
Welcome to the group. Deb
I am fairly new to the group as well and have a few other autoimmune conditons (Crohns, Colitis, Anklyosing Spondyitis), these were diagnosed during the preceding 4 years. Strangely I was on Imuran for these conditions for 4 years and then developed MG while on one of the mainstay treatments for MG. Intially I was serum positive (AcHR binding) but a later measurement showed I was borderline. I have had a positve SFEMG test in several muscle groups and will soon have a RNS test.
To be honest for me little of all that matters, what matters is that the Mestinon worked quite well. It was that I had a treatment that helped, not so much the supporting tests. With MG they only really test for 2 antibodies (AcHR and MuSK) and research is showing that there other other causes that are not readily tested for causing this condition. MG for many is a clinical diagnosis based on symptoms and response to medications.
Over time don't be bashfull about asking for repeat testing if you feel the condition is worsening. For some the antibodies do not show up in the blood tests until many months after your symptoms first show up.
Certainly welcome to the group, I am sorry you are here but glad you found us
Best of wishes
Joe
Annette
What lovely welcomes and stories so similar to mine. I waited so long to see the specialist because she specializes in MG and other neuromuscular diseases. When I was having my history done by the resident, she said "So you're here to see if you have myasthenia gravis". I looked shocked as I was naive to the world of seronegative MG! I had been expecting MS (three cases in our family) or ALS.
So I'm glad it is just MG, compared to the other options :). I never expected to have a simple med that worked so well. My doc says that the natural course of MG in people like me shows no real worsening at year 3-5 and onwards. Since it took so long to diagnose, I might not get worse and need steroids and immune modifying drugs. Good thing as I've had low WBC for decades and calcium problems to boot!
Have a good day everyone - lots of snow coming here. Glad I bought our new birthday present early - a rechargable snowblower as I was too weak to start and use an old gas one.
Flutebell
I am seronegative with an unremarkable SFEMG but have a clinical diagnosis based on symptoms and response to mestinon....so, you have come to the right place, there are a few of us here as you can see and you are definitely not alone!
Good luck with the mestinon, I really hope it works its "magic" for you - keep us all updated and as the lovely Barbel said - ask all the questions you need to :) x
I think my neuro would firmly disagree with the "not worsening at year 3-5." Many of us found our diagnosis well beyond that time and as a result of worsening symptoms. I also have generalized MG and bulbar symptoms. I think with the variety and inconsistency that MG is known for, that statement is too broad and not well supported. Either way, you should know that it a rough road ahead but now you have all of us to show you the support that you need. Ask as many questions as you like because that's what we are here for.
Welcome to our DS Ohana (family). Sorry to hear that you are having such difficulty but I know it will get better. It's just a matter of time and I'm so happy that you've responded so well to the mestinon.
Aloha,
Angie
A doctor I talked to who knew a lot about MG said that the disease is relatively still unknown and new to the medical world and that a lot of times the antibodies do not cross the blood brain barrier to make it into the rest of the blood stream. I suppose someday in the future they will have better testing, but this disease is still not well understood.