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...

1,709 Members

7,414 Posts

0 Online

chaos_mind 01/05/2018

Can’t say if I am still in denial after two meetings with my neuro since I got all these symptoms of MG. But worst of all is I can’t figure out what to do after. I had been at first given just 15mg of prednisone and once a day of 60 mg of mestinon, then went into 30 mg of prednisone and 4 tabs a day of the mestinon... making me feel like suicidal with my liver as I am taking another med for my thyroid as both went bigbang on me last September 2016. I have this crazy DV that makes everything spin around me and looking into my eyes in the mirror, my eyes looked like lazy eyes(pupils not aligned)! It brings out that depressing mood I had conquered before after a MVA accident in 2013 and it doesn’t help at all that I had to go through different emotions everytime it hits me. Plus the fact that I have a six year old son and a 16 months old baby to look after while I am so in need of awful lot of rest.

I tried to search the web for anything to help me go through it and I came across this site. I want to know is there really a light after this dark tunnel? I set aside last September my Continuing Education as I was so weak to even think of getting to school. My husband was so sure I could get back into my feet again this February for my plans for school and yet I still have this DV, funny feeling of twitching muscles around my eyelids and other parts of my face, and splitting headache on one side and a one time occasion of “drowning”,(I can’t breathe). It made me think a lot, do I really have to be like this with MG?

My class will start this coming tuesday and I couldn’t quite decide if I should do it or no..?? But what happens after? Even working won’t be a part of the plan either as I can’t even have the energy to do normal house work. Putting in the question too of my husband being alone to carry all the financial issues for us as we are just regular income(making us low income family) now that I am like this.

Please tell me, is there a way out of this? Or should I say, will I still have a future even though I am mentally exhausted and weak to even face the day??

wskimball 01/05/2018

Hey chaos, you are going through the worst part of it now. I had the DV for a while and it would come and go. I tried to work with it by wearing an eye patch but that was not working. One thing that helped me was many many treatments of plazmapharisis. After 38 treatments I was able to start driving and get on with what would soon become the new world for me. I retired (and got disability because of the vision issues) and can function fair now. I was also diagnosed in Sept 2016. I do also take 2000 mg of celcept twice a day. I was on 480 mg of mestinon but now I am down to 120mg and just increased my prednisone to 30 per day. As many will tell you, you have to massage the drug regiments to fit your needs and it is different with each of us. You have to respect the disease and know that stress will make it worse. This site has a lot of information too. http://www.myastheniagravis.org/ They are very informative. Get started on your disability, it took me 9 months of effort. Reach out any time.

Rhanson 01/05/2018

Sorry that you are having so many problems. Many of us have a hard time, especially the first year of MG.
MG is life altering. In the older days it would likely kill us. However with immune suppressants we now live, adjust and most of us get on with our lives.
But it is not quick nor easy. You really have to understand you may be down for at least 6 months or maybe a year; first to get MG under control and then to figure out the ongoing longterm medicine that you will need.
I got through my first 5 months that included a stay in the ICU, and large amounts of mestinon to keep me functional during the day (up to six 60mg pills a day as needed ) and 60 mg of prednisone a day.
After the intensive medications, my DV went away, most of my weakness went away, and instead I had side effects of the medications to deal with.
Then comes the tapering down on the medications to find the smallest amount of the best medication for us (each is different). That lasted the next 6 months.
Then comes the ongoing balancing of medications with symptoms, something that may last the rest of our lives.
If you try to do everything a normal person does in the first year as you get things figured out, you probably make things worse.
Think about this as a disease that you are fighting for your life and that you may have to give up a year of your plans, but likely will be able to return to them again after that.
I lost a year of my active life to MG, the first year. But since then I have been OK.
Good Luck

chaos_mind 01/06/2018

Thanks wskimball and Rhanson for the replies. It’s consoling to know somehow I am not alone in this. Sad to say, my neuro wasn’t as detailed as to what would the days be ahead of me; simply gave me prescriptions and work on blood tests. He also doesn’t seem to think that I should see it as a disability as it is “treatable”. But how to function on the daily basis when I feel so tired all the time and weak with a DV sending me to complete meltdown, I honestly do not know. As for claiming for disability, w/o my Neorologist backing up on my issues, I guess that is a na-da. And I live nowhere in the US or UK where MG is acceptable to file for disability. That leaves me to nothing. I noticed as well that whenever I get too upset, I started feeling like a battery out of life that I simply feel sorry once again to myself; which doesn’t help. I needed to understand fully how to manage MG but much to my disappointment, I lack all the means and ways to grasp the total picture of what I am
In for. Likewise, my husband sees it as something like a virus that taking the meds will make you jump back 100% to your old self and abracadabra I am me again! But thank you, I have finally let out my frustration even just through having it out... God help us all who had to go through this..

Jimb01 01/07/2018

I have MG. I was diagnosed in 2002, but had the symptoms for years before a real diagnosis was made.

I don't know what town or state where you reside, but the information on www.myasthenia.org website will provide you with much information - including streaming videos, pamphlets, and other materials. The also sponsor a few support groups, they also host an annual conference that is exceptional.
-
The best recommendation I can make is to link up with a support group or others face-to-face. Understand the disease - knowledge is your greatest tool, and stress is your enemy.
-
Stress activates the immune system. This increases the effects of the MG.
-
If you live near Boston, MA, Please see our website www.mgane.org for our support group information. - I'm on the board.
-
Otherwise, ask your doctor if he knows of any support group for MG.
-
I was giving-in to despair while in the hospital IC ward for a month and the brightest point was when my doc introduced me to another patient who had MG - and had rejoined the world and was doing fine - not 100% but back to work and adapting.
-
That's where I am Now - adapting in the real world - and doing well.

chaos_mind 01/07/2018

Thank you Jimbo1 for the informations you mentioned. Yes, myasthenia.org was the first one I came across with after my neuro flatly said, “this is not a mild stroke, it’s myasthenia gravis”. Funny how two weeks before that appointment with the neuro, when I searched for my symptoms from the web;I was given MG as one of them. But because I am not so familiar of it, I slashed it out from the options, thinking none of my family has it or even heard about it. Now, I had to accept it and how to deal with it is my greatest fear. My life is never a day out of stress and like everyone is saying, it’s our biggest enemy. Honestly, my neuro acts like it is a common thing and hardly given me anything that would atleast make me understand what I am
In for.
I am from another country so as much as I am so keen on looking for “someone” like us, I am afraid none is from my side of the world or none would like to come out in the open.
Anyways, thank you. It’s nice to know a lot still cares for those who are in need of it. God bless you.

Nanosecond 01/09/2018

Thanks so much, Rhanson! I just joined, and your reply to chaos was just what I needed to hear today.

piamaria 01/15/2018

It does get better. Once you get your medication sorted out, physically you will feel better. Emotionally, I have found this one difficult. I've found if I can get it through my head, that I really don't have any control over this. I try to accept that I don't know what today, tomorrow or next week will bring. Bring your stress levels down as much as possible. Stress is a huge factor. Find a neurologist that listens to you. You are more than MG.
Don't take on more than you feel you can.
Remember to do things you enjoy. I always remember God has this and He will get me through it. I'm also hoping He has a sense of humor.
Good luck!

chaos_mind 01/16/2018

Thanks for the message piamaria. Just the other day, I was on the berge of looking for a new neurologist. I am really so disappointed he seemed not well verse about MG although he said he’s a general neurologist. I have this overwhelming tiredness that no matter hard I try to rest, it only last half an hour and I am so tired again. I told him that as well as all the twitching muscles, cramps and headache; he said it’s not part of MG. Now I would have to get back to my family doctor and get these check as well as the higher sugar level and weight gain. It’s not reassuring not to get the answers right especially when you are feeling down as it is. He wants me to get IVIG as I had trouble breathing couple of weeks ago, is this a wise idea? And all my blood test came back negative, anti-musk and MG test.. I would like to know if there is anyone there who had the same equation as I do??
I always believe in Him and I always say, “His will be done”, but I sometimes have that human voice that say, “I don’t feel You love me as You let me suffer like this”. I grew up in a very religious family and the faith never weavers even in vain, but I feel so down right now I can’t see the light.
Anyhow, I joined this group because it’s a place I feel I could get some of those negative things out of my mind and think I am not alone in this... I have some other people out there facing the same wall. And I am glad there is one like you who took the time to send me a message. I appreciate it. Thank you.

copperzincbear 01/17/2018

It sounds like you may have anxiety issues, as I recognize them in myself as well. It is very scary to be diagnosed with a chronic disease, especially when you have a doctor tell you that you have it and then let you go with a lot of questions.

I will say that my myasthenia symptoms seem to increase when I'm anxious and decrease when I'm not. I had ocular symptoms that seemed to blow up when I went outside, but subside when I was inside on the computer just relaxing. Even in the opthalmologist's office, I had diplopia when I was anxious to get over there and get examined, and when I'd walk around the hallways of the hospital, but when I got distracted from my anxiety and would be speaking to the resident physician my eyes would resolve - the resident even observed this!

Now, it could be simply that my eyes were experiencing a lot of muscle tension when anxious, and since the opposing eye muscles were weak, they would pull in different directions. But I started getting really better from my first episode after seeing my neurologist and feeling confident that she understood the disease and would treat it skillfully. During my second episode, my symptoms started resolving the afternoon after my neurologist said she'd let me see her the next day because my symptoms had been worsening.

So I really think that working on my anxiety helped me greatly, and best of all, it's a worthwhile pursuit in and of itself, regardless of whether or not it helps my MG.

I know where you're at right now, though, especially since you don't know what course this will take; we've all been there. Eventually I just figured that I have to get over this anxiety because it will hurt me now. I still struggle with it, but now I know I got over it to a large degree facing a really scary period.

chaos_mind 01/26/2018

Thank you for the message copperzincbear. I knew i got scared a lot hearing about having MG. I had a lot in my mind, my kids, my school.. my future. Then not knowing where to head on as my nuero seem to base everything not from experience but from the book.

Just like one of the member here and her story, I am also a doer person. I like to move a lot, organize, clean and a multi-task person. That said, it gives me a lot of disappointment not to be able to do things around anymore. But now I stop. I just had to do what I have to do. Plain and simple. It made things a lot lighter, not productive but emotionally lighter.

As of my nuero, he said about IVIG and thymectomy in the next few weeks while he works on the requests and all that stuff. That thing is another, as I have no idea if it would work on me or not??? I saw other posts about the IVIG and thymectomy and I am having second thoughts about taking them. How do they really work and what to expect about them. I need more info.

Thanks once again big bear :)

Join the Conversation