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...
Like so many before me, I've been experiencing symptoms that have lead my Opthomologist, and Neurolgist to conclude that I have MG, but can not find support of it through Clinical Tests, so far. I have droopy eye lids in both eyes, double vision, ocular migranes, tire very easily when trying to almost anything and require a 2-3 hour nap every day, and have aching leg muscles starting at my butt and traveling down the back of my legs. Also, am having center of chest tighness, have sore throats and slight difficulty swallowing as the day wears on. (Neurologist also discovered that I also have Neuropthy in both legs).
Had the normal blood tests, and those were negative for MG. Today, did the electical tests, and everything checked out fine there. They drew more blood today, to check for Anit-Musk, and are going to schedule an xray.
Mercifully, he has prescribed 60mg of Mestinon, and scheduled my return to see him on September 3th. So, I'm hoping that the Mestinon delivers me some peace and comfort, or at least some kind of improvement as any will be appreciated.
I certainly can see why they call this the 'Snowflake Decease', as it's all so confusing, while I seem to be developing more symptoms and feeling worse each week.
Had the normal blood tests, and those were negative for MG. Today, did the electical tests, and everything checked out fine there. They drew more blood today, to check for Anit-Musk, and are going to schedule an xray.
Mercifully, he has prescribed 60mg of Mestinon, and scheduled my return to see him on September 3th. So, I'm hoping that the Mestinon delivers me some peace and comfort, or at least some kind of improvement as any will be appreciated.
I certainly can see why they call this the 'Snowflake Decease', as it's all so confusing, while I seem to be developing more symptoms and feeling worse each week.
One of the problems with testing a new medicine is what researchers call the "placebo effect." When I worked in medical research, we had to remember that about a third of folks do better if they get a sugar pill that they think will help them in place of a regular drug.
It is a real effect--and hard to distinguish, especially as many people have problems that improve with time or are variable in symptoms. It also may be that if you think something is going to help you, your mind is relieved and you actually do better. So even if mestinon makes you feel better, not always a sure way of diagnosing MG.
Good Luck!
Bear
From your profile it sounds like you have already had a rough ride these last couple of years. I hope you had a chance to recover from your heart problems before all this started. Mestinon was a wonder drug for me, at least for a while, and hopefully it will give you some relief of symptoms.
It sounds like your symptoms are progressing rather rapidly. Be sure to stay in close contact with your neuro. Mestinon is a good drug for MG as long as the muscle receptors aren't all gummed up with antibodies. If you are having breathing problems, you may need more help to keep the antibodies down soon.
There is a lot of information in our links group that will help answer questions about MG, and there are links to materials from the Myasthenia Gravis Foundation that you can keep with you, information to take to the hospital, drugs that don't agree with MG, etc.
You have had experience with hospitals, but you will find, that most hospitals have little experience with MG.
It is great to hear of someone who has received a clinical diagnosis in the absence of positive tests. That has been a stumbling block for so many of us. Although some of your symptoms such as neuropathy and muscle aches are not usually prominent in MG we have people in the group who do have these problems.
b.
The real benefit is knowing that others before me have been experiencing similar things, and are stepping forward to share. Through that knowledge and support, it eases the burden.
If it helps, I was prescribed 60 mg, and was ordered to take it four times a day, at four hour intervals. I am thinking, early in, that it might not be strong enough, as I still have a sore throat, slight sore eyes, and some muscle discomfort in my legs and butt.
It would be great if you are able to control your symptoms on Mestinon alone, but most of us need to take some kind of immune suppressant, so the neurologist may want to start that as well.
Your remaining symptoms are the ones that most of us do not share and may be due to something other than MG. So glad that you and Terry are feeling better. b.
The link and discussion is under myasthenia and medications. The link to the links group:
http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news
b.
Best wishes, Gez
Looking forward to the CTscan of my Thymus, and getting those thoughts behind me, plus getting the additional drugs prescribed now that I've had some success with Mestinon.
Thank you one and all for the continued help and support.
The other reason for calling him, was that I also wanted/needed to hear about the results of the CTscan done this past Monday. The doctor states that everything looks clear! This is fantastic.
As a result of all blood tests being clear, and all the electical tests were clear, but still having symptoms, he believes that I simply am having Ocular Myasthenia Gravis. But, whatever the case, I know how totally fatigued I am, which was dramtically noticed during and after my cancer treatments last year. Then, with my droopy eye lids, double vision, sore eyes, leg pain and over all weakness, I have felt pretty useless.
So, when I see him in September, we'll continue talking about my MG, but then move on to the Sensory Polyneuropothy.
My recommendation, to all my friends, is to call your doctors when you've had a test, rather then waiting weeks before your next appointment. We've paid for the tests, and information can help ease our anxiety.