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...
So the last year or so has been great for me. Out of nowhere, I went into remission, and I had my strength back for the first time in 15 years. I started going to school, working out, and kept pushing myself to see where my new limits were, which was a fantastic feeling. Fast forward to a few months ago; the symptoms started to come back. The weakness, the tiredness, the vision issues along with my eyes drooping. My legs started going to jello again, and just last week I fell again for the first time in over two years. I went to my doctor to see what happened, but he wasn't sure. He told me sometimes it just comes back and that there isn't much he could do other than treat me again. I've been on Mestinon now for a good month, but haven't seen any improvement, which is what happened to me years ago, so it isn't very surprising. The steroids mess with my body quite adversely, so I refused to go back on them again, as I didn't wish to experience the extreme sickness and throwing up constantly like I did the last time. So when I see him next week, I plan on asking him for new options.
The reason for the post, is I need some advice on how to proceed. I feel lost and honestly depressed again. To have normalcy, for it to be retaken, I don't know why, but it hurts worse than the first time back when I got sick 16 years ago. It isn't helping that those around me, those who are supposed to care, seem unable to encourage me and have suggested that I'm just lying to myself to think that I could live a normal life. After much pressuring from my father, I have taken a break from school, because if I can't work, then I'm just racking up a lot of debt that I'll never be able to pay back. I have been on disability for 16 years for my MG, because of how badly it affects me, but I was hoping to come off disability and become a member of society again and work and be productive. I'm not sure where to go from here, and I don't know what to do. I don't even know why it came back or went into remission in the first place. I'm curious if any of you know or have had experiences in this vein and how you overcame them or why it happened. I appreciate the feedback and advice.
Tesinato
Hope you get another remission soon. Best wishes for peace,
TJ from CA
Sorry to hear your MG has returned. I too am in remission and wonder if or when MG will return. And like you, while in remission, I try to take advantage of the good time.
I don't think what we do or don't do is a cause of MG, but rather some genetic variation that we have that makes us more likely to have MG. I don't think we can prevent it or cure it with diet, exercise, mental positivity or anything other than immune suppression although our lifestyle can help us with MG.. I don't blame myself -- it is a waste of time.
My goal was to be functional with MG as fast as possible. For me that meant prednisone at high doses and mestinon at high doses. I had problems with both, but I decided the side effects were less of a problem than MG (I had been in the hospital with breathing problems early on). My plan was get MG under control ASAP, tolerate the med side effects for that time, then switch to something like cellcept or imuran gradually tapering off the prednisone, thinking that it would take about 2 years to make this plan work. I went into remission after 1 year so never had to get on immune suppressant 2. After the initial months of high dose prednisone, the later low dose was not terrible.
Some years ago, one of the members on this group explained his strategy (not told him by any of his doctors but accepted by them for a trial). He said that about every 6 months (or something like that) when MG symptoms started to return, he took one week of high doses of prednisone and then quit and waited. In a few weeks his MG would get better and stay better for many months or more. This is a medical treatment that is used in other medical problems and most doctors are familiar with it and there are prednisone packs just for it.
The goal is a "burst" of prednisone over about 6 days so one does not have to taper off of it, doesn't get a lot of side effects, and yet a lot gets into our body at once to suppress the immune system and slow it down for many months.
When (or maybe if) I come out of remission), I plan to see if my neuro will accept me trying that first. I know that I can tolerate large doses of prednisone from my past experience. My strategy will be 60 mg/per day for a week, and then waiting with mestinon to see what happens.
I don't recommend doing this; I haven't tired it, but I think you might want to ask your doctors what they think.
To get to the emotional side of MG returning, I think it would be hard for me too. I am 72 years old, so at a different stage of life. The first time I got MG (age 65) I though about suicide but my neuro assured me that with treatment my life could be decent. And now for 5 years it has been normal. However, if MG comes back, I think I would look at some of the medications for anti-anxiety or whatever they use.
A friend of mine got diagnosed with Alzheimers three years ago. He got really depressed, thought about suicide, and finally decided to try some meds for the anxiety. A few weeks later he said that life was again good, he didn't worry about Alzheimer's anymore, and figured to live his life as fully as he could. And he is doing well. He says "I know I have it, but it doesn't bother me. Amazing what these pills can do."
Definitely a better route than suicide or giving up. One never knows what may happen next year or the year after. My niece has MS and about every other year seems to have a relapse that wipes her out. A few months of treatment and disability and she climbs back into life and gets going again. I admire her greatly as she gets through the ups and downs and keeps on enjoying life.
Good Luck
Russ