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 wanted to start another thread so that everyone who was kind enough to give me advice and wish me luck would see it. Thank you all so much for the replies you posted and the hugs you sent I feel very privileged to have found you all and am so grateful for your amazing support!
I took all of your advice and went to my appointment prepared - I had my lists (thank you maryt936, lojos66 and luvspringers) I wrote a symptom list Chronological order and order of severity, I also noted a brief history and the questions I wanted to ask in bullet form on a second sheet along with things I am not able to do now. I also took an hourly photo diary to show the fluctuations my face and eye can go through during a days activity/rest and before and after photos of an upward gaze and a 3 min ice pack test. Taking your advice Ann I felt he would see that Myasthenia is in my mind and after Newmugg's advice I kept looking at those lights while I was in the waiting room!!
I have to say that I couldn't have gone to a better Neurologist - it turns out he takes national referrals for possible Myasthenia cases and is the top man in the UK! He said there is nothing else it could be, he thanked me for the photos (the photos my last neuro seemed irritated by before he told me I do not have MG and there is no evidence of it?) and said everything is highly suggestive of Myasthenia the only "fly in the ointment" is that my facial droop is one sided where he would generally expect it to be both sides. He said there is a chance it isn't MG but if that becomes the case I still have symptoms which need treating whatever their cause (like my facial droop!) and he will make sure I get whatever I need. He is arranging for me to go to his nerve/muscle testing clinics in the next few weeks and will be testing my facial muscles and possibly doing the MuSK antibody test.
I have to say that I am so relieved to have found a Dr who seemed to understand what I was saying instead of looking at me like I had lost my mind - and a Dr who actually wants to help me whatever the cause of my symptoms and not just try to disprove or rule everything out!!
Thank you all again for all of your support and well wishes - you must be a very powerful group as it has taken me 9 years to get to this point!! I am eternally grateful to you all.......Eve.x
I took all of your advice and went to my appointment prepared - I had my lists (thank you maryt936, lojos66 and luvspringers) I wrote a symptom list Chronological order and order of severity, I also noted a brief history and the questions I wanted to ask in bullet form on a second sheet along with things I am not able to do now. I also took an hourly photo diary to show the fluctuations my face and eye can go through during a days activity/rest and before and after photos of an upward gaze and a 3 min ice pack test. Taking your advice Ann I felt he would see that Myasthenia is in my mind and after Newmugg's advice I kept looking at those lights while I was in the waiting room!!
I have to say that I couldn't have gone to a better Neurologist - it turns out he takes national referrals for possible Myasthenia cases and is the top man in the UK! He said there is nothing else it could be, he thanked me for the photos (the photos my last neuro seemed irritated by before he told me I do not have MG and there is no evidence of it?) and said everything is highly suggestive of Myasthenia the only "fly in the ointment" is that my facial droop is one sided where he would generally expect it to be both sides. He said there is a chance it isn't MG but if that becomes the case I still have symptoms which need treating whatever their cause (like my facial droop!) and he will make sure I get whatever I need. He is arranging for me to go to his nerve/muscle testing clinics in the next few weeks and will be testing my facial muscles and possibly doing the MuSK antibody test.
I have to say that I am so relieved to have found a Dr who seemed to understand what I was saying instead of looking at me like I had lost my mind - and a Dr who actually wants to help me whatever the cause of my symptoms and not just try to disprove or rule everything out!!
Thank you all again for all of your support and well wishes - you must be a very powerful group as it has taken me 9 years to get to this point!! I am eternally grateful to you all.......Eve.x
Great job being prepared.
What a relief.
Ann
Annette
This is on the U.S. Myasthenia Gravis Organization's website which many refer to in this group..."One or both eyelids may droop to cover all or part of the pupil of the eye, thus obstructing vision." http://www.myasthenia.org/LinkClick.aspx?fileticket=uT52jMdiL6I%3D
I only knew to go to the eye doctor when my eye drooped because of this group. I had weakness and breathing issues for 4 years prior. I have the nerve test next too and the neuro will do repetitive movements before measuring them.
So Congratulations you are no longer alone!!!
What a relief for you .I am so glad you found a neuro who listened.
Lorraine
I know how hard it can be and I am so happy to hear you are on the right path!