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...
I just read the following article and it made me think of all of our members still waiting on a diagnosis. http://news.unchealthcare.org/news/2012/june/rosanne-griffith-in-search-of-the-new-normal
I fought the following statements in the article may give you some hope.
Diagnosing myasthenia gravis is difficult because the symptoms can be transient and fluctuate in severity and too often especially in women the symptoms can be ascribed to something else, said James F. Howard Jr., MD, leader of Rosannes team and distinguished professor of neuromuscular disease and professor of neurology and medicine at the UNC School of Medicine and chief of neuromuscular disorders in the Department of Neurology.
Weve made strides, but the diagnosis is still missed quite often by most physicians, Dr. Howard said. Its like having a problem with your car. The problem cant be replicated by your mechanic, but on the drive home, the problem recurs. Its back and forth and eventually by process of elimination and more precise tests we figure out what it is.
I can only image how difficult it is for you. Im thinking about each of you today and wishing you will get a diagnosis very soon.
Bruce
I fought the following statements in the article may give you some hope.
Diagnosing myasthenia gravis is difficult because the symptoms can be transient and fluctuate in severity and too often especially in women the symptoms can be ascribed to something else, said James F. Howard Jr., MD, leader of Rosannes team and distinguished professor of neuromuscular disease and professor of neurology and medicine at the UNC School of Medicine and chief of neuromuscular disorders in the Department of Neurology.
Weve made strides, but the diagnosis is still missed quite often by most physicians, Dr. Howard said. Its like having a problem with your car. The problem cant be replicated by your mechanic, but on the drive home, the problem recurs. Its back and forth and eventually by process of elimination and more precise tests we figure out what it is.
I can only image how difficult it is for you. Im thinking about each of you today and wishing you will get a diagnosis very soon.
Bruce
For example, I am a stickler on reporting accurately. Therefore, when I have been asked if I experience shortness of breath, I have said, "No" because I have not ever been gasping for breath and clutching at my throat. When asked if my hands have been weak, I answer, "No" because I am mostly aware of my arms being weak. However, the truth is that I can not open things I used to be able to open easily... but, as far as I know, I still have a hearty handshake. How critical is it that the Neuro and I are defining things in the same ways?!
I have also not wanted to be presumptuous by offering possible evidence for MG when it has not yet been requested... such as before and after photos of my face. B... who is endlessly *there* for so very many of us... has looked at some photos of my face/eyes and noticed things I never would have noticed. Should I be offering before and after photos or just let my outstanding Neuro find his own way and ask for photos when/if he thinks they would be relevant?
I have seen the video in the archives about how to communicate effectively with your neurologist, and recommend it to all of the newbies. But, the video is more about ongoing treatment than evaluation and diagnosis.
I do not want to PUSH for an MG diagnosis, even though I am not personally aware of any other possible explanation for my situation. It is very important to me that my Dr. Weinberg (MG expert) diagnoses me in his own way and in his own time... and I am supremely confident that he will come to a correct diagnosis. I highly doubt that he would allow his professional judgement to be clouded by anything that I brought to his attention, now that I think of it.
Other than attempting to answer his questions accurately, what, if anything, should I be *offering* to assist him? If I do not show him photos that might help him accurately assess my face and eyes, am I "withholding evidence?!" ARGH!!! Please help!!!
Love and thanks to all!
Rosie... obsessing :-(
My first thought was if you write symptoms down to take with you it may help. You accurately describe them to us.
Second....treatment took about a year for me to take effect. If your goal is diagnosis of MG you may see treatment quicker.We have to advocate for ourselves.
I am so sorry you are going through this. I sometimes believe I was lucky to have a crisis early so I was diagnosed. But we don't want that for people. Things change daily. There are times I have thought..I can't imagine a crazier desease than this one. Sort of like the weather ...always changing.
Ann
No matter how manner the symptom, I would report it. During my recent appointment I happened to mention how bad it is when you have to have your wife open your drinks.
For the very first time in her exam she checked the strength in my fingers. She was very surprised in how weak my fingers were. My hands, arms, facial muscles were all very strong. I always test negative with my hip flexors. My comments give my doctor some important new information.
You never know when some small fact may help your doctor. Take your pictures, videos and journal to your appointment. Have your doctor review the records with you.
Wishing you the best.
Bruce
Rosie the Riveter is truly my icon! I have taken great pride in my physical strength and my ability to wield power tools and sledge hammers with conviction... lol!!!
When I was in college, on a Universal Leg Press, I could press 360/480 lbs and do ten reps of ten presses to show of to incredulous person after incredulous person who wanted to see it for themselves. Most likely, I was cheating by making use of leverage, but... I am guessing that leverage or no leverage, most women could not do something like that under the best of conditions.
Most of my age, I had more strength (arm wrestling, lifting and moving very heavy things) and muscle tone than most women my age (without working at it at all)... but no stamina. I have often wondered if other people could possibly feel the way I do (like rubber, rag doll, like gravity is trying to pull me to the ground, like I am slogging through quicksand).
I have been feeling like my situation is so much less severe than that of others here that I should not take up a thread with my own concerns. But, I am relieved to have your help with this evaluation process!
Many, many thanks for the reality checks, Bruce, Ann and B!!!
Rosie
My journey so far has led me to 3 different neuro clinics, one hospitalization, and more recently to a new neuro and a consult at a rheumy clinic. After the recent hospitalization, I seem to have come out of the 'low point' with my symptoms, and the weather has cooled and air dried out significantly. Admittedly, this improvement in health has me occasionally thinking "was I making all that up?" but I know it was true... it's just much better right now.
Love to all, and thank you again Bruce,
Tricia
To stay on topic, I would also recommend to Rosie to share symptoms with her doctor. If he's an MG specialist, he's headed that way anyway, and the sooner the better on getting a dx.
Why are you here? (This is not a stupid question, there was a time when you did not need to be seen and now you or someone else feels like you do.)
What do you need that I can provide? (in this case hopefully diagnosis)
What information do I need?
Where do you want to be after you leave the office or after treatment?
A sample answer to the first question is: I used to run marathons, now I can't get up the back steps. It tells the doctor something about what your life was like before and why you are dissatisfied with it now.
A statement like I hope you can tell me what is wrong, or why I can't climb those steps and then I can, is not out of place.
The doctor can examine you, but it helps if the doctor knows where to look (although there is a routine the doctor follows, depending on specialty and complaint). This is where you can be helpful.
Bruce mentioned saying that he couldn't open cans which drew more attention to his fingers. I couldn't sit at the table at night without leaning on it and I had problems with inclines which should draw attention to the hips and legs. A statement, I have most of my visual problems at night should be a clue that it will take sustained effort to reproduce the problem. (That is one of our biggest problems, the doc is limited to time and it takes time before muscles fail in MG unless we are well into the illness.)
It is helpful, if you have many problems, to list them in some sort of order--by time or head to toe and describe what it means functionally. This can be a paper you hand to the doctor, while you verbally just hit the high spots. Emphasis on change and functional problems will tell the doctor more than "I feel tired and weak." (Please don't say that, it will put the doctor to sleep.) I could run 4 days ago, now I can't. I could sit at the computer all day as recently as last month, now I can't without leaning my chin on my hand frequently and taking breaks because my eyes won't focus.
Don't worry about being vain, if your appearance has changed, pictures are helpful. If you know you may not be able to reproduce the problem, pictures and video are helpful.
The doctor will most likely order tests, you can ask what they are for, ask for what the doctor is looking for, what the doctor is thinking might be the problem. This may be a good time to say that you are worried that you might have some weird autoimmune disease like MG, would the tests pick that up (if it hasn't been mentioned). That is often why "you are here." b.
I don't know how it can go undiagnosed for years..
I had symptoms for a few months which i ignored.
When my eye drooped i went to my GP who thought I had palsy. So referred me to neuro for opinion, she diagnosed me straight away with MG. She also sent me for tests, and electro-somethine-something which sent electric pulses on face and arms that showed positive for MG as muscles got weaker after pulses. Even after two positive diagnosis, i was referred for more tests. As well as to another neuro, who checked the results of antibodies test (i had the ACH antibodies level of 18! normal level is 0.08) and physical tests showed positive. 3 separate diagnosis by 3 separate neuros and all their tests came up positive.
So i cant understand how it goes undiagnosed. Even the first neuro who i was sent to for palsy, without tests confirmed it was MG, she said MG is the bread and butter of neurology - like it is so basic or something.
Hope there's some light and answers for those still waiting to be diagnosed.
Fatima
Not everyone with autoimmune myasthenia has the acute onset, classic symptoms, and positive antibody and EMG tests that you have. Some of the antibodies have no commercial tests, many presentations are atypical and symptoms may come and go and may not be recognized, especially in people who are stronger than normal.
When neurologists look for MG, they are looking for people like you, who among those eventually diagnosed with MG are still only 80 % of us, which means that one out of five does not present that way and doctors, at least in this country, are hesitant to recognize an unusual presentation of a rare disease. You only had to see three doctors, many of us who do not have the positive antibodies can count the number of doctors we have seen for our symptoms on both hands.
That does not mean that we do not have autoimmune myasthenia or that the antibodies we have will never be recognized or that we do not respond to treatment like others with myasthenia. It just means that for the time being we are more difficult to diagnose or that our symptoms are more difficult for doctors to accept as being "real." b.