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...
Hello everyone!
My name is Chez. I'm 32 and a single mother to an ADHD kid with anxiety who the docs now think has high functioning Autism. He is awaiting testing for that. I have also worked as a cake decorator for the last 13 years. I'm close with my family, love my dog, and love God.
For the last few weeks my vision has been blurry. At 1st I thought it must just be allergies as I had a cold and sinus pressure. Next thing I knew I was having trouble seeing when driving. Then I needed someone else to drive if we were going out of town. Next I was seeing double and not wearing my glasses because they make it worse. Now, I have to have someone else drive me all the time. I can see OK if I'm sitting still and focusing up close.
I looked up what I was experiencing and saw that it was likely neurologocal. So I made an apt with both my GP and eye doc. My eye doc said my eyes are fine, but he could tell my eye muscles and giving. He prescribed prisms for my new glasses. I described different symptoms(vision, twisted speech, loss of grip in hands, creepy feelings in my leg muscles that make me twitch) to my GP. He checked my ears and shined lights at my eyes then he started going in and out of the room and looking stuff up because he said he had an idea...
Next he's telling me that he thinks I might have a really rare disorder called MG -except he used the bigs words that I'm still not sure how to say correctly...lol He said that the nearest specialists are far away, but that he actually treats a couple of MG patients locally. He said we would do blood work to rule out other possiblities and that if the blood work came back negative, he would start me on Pyridostigmine. Then if it helps, he would arrange for an MRI and chest scan to check for a tumor that might have to be removed. He also said that if he does all this and can't find anything that I would have to go to a specialist. About this time -I freaked out as I have just again gotten my bills caught up...lol He then tried to comfort me. He sent me to the lab then, but not before telling me and his nurses that this was his most exciting case of the day. I could tell that as a doctor that he was truly excited to find something rare.
So now the labs have all come back negative and he's started me on the med. I'm taking 30mgs 3 times a day for a week to see if it helps. My eyes keep gettin worse and even slight movements are staining. I'm still wotking so far even though I sometimes feel sick to my stomach and feel like I'm sometimes gonna run into people. I had a migraine with aura the other day and by the end of the day -I can really feel the strain on my eyes.
My doc seems to think if it is what I officially get diagnosed with that it is pretty manageable. Some of the stories I've heard are kind of scary though... I'd like to hear what you guys think from your POV.
Thanks and God Bless :)
My name is Chez. I'm 32 and a single mother to an ADHD kid with anxiety who the docs now think has high functioning Autism. He is awaiting testing for that. I have also worked as a cake decorator for the last 13 years. I'm close with my family, love my dog, and love God.
For the last few weeks my vision has been blurry. At 1st I thought it must just be allergies as I had a cold and sinus pressure. Next thing I knew I was having trouble seeing when driving. Then I needed someone else to drive if we were going out of town. Next I was seeing double and not wearing my glasses because they make it worse. Now, I have to have someone else drive me all the time. I can see OK if I'm sitting still and focusing up close.
I looked up what I was experiencing and saw that it was likely neurologocal. So I made an apt with both my GP and eye doc. My eye doc said my eyes are fine, but he could tell my eye muscles and giving. He prescribed prisms for my new glasses. I described different symptoms(vision, twisted speech, loss of grip in hands, creepy feelings in my leg muscles that make me twitch) to my GP. He checked my ears and shined lights at my eyes then he started going in and out of the room and looking stuff up because he said he had an idea...
Next he's telling me that he thinks I might have a really rare disorder called MG -except he used the bigs words that I'm still not sure how to say correctly...lol He said that the nearest specialists are far away, but that he actually treats a couple of MG patients locally. He said we would do blood work to rule out other possiblities and that if the blood work came back negative, he would start me on Pyridostigmine. Then if it helps, he would arrange for an MRI and chest scan to check for a tumor that might have to be removed. He also said that if he does all this and can't find anything that I would have to go to a specialist. About this time -I freaked out as I have just again gotten my bills caught up...lol He then tried to comfort me. He sent me to the lab then, but not before telling me and his nurses that this was his most exciting case of the day. I could tell that as a doctor that he was truly excited to find something rare.
So now the labs have all come back negative and he's started me on the med. I'm taking 30mgs 3 times a day for a week to see if it helps. My eyes keep gettin worse and even slight movements are staining. I'm still wotking so far even though I sometimes feel sick to my stomach and feel like I'm sometimes gonna run into people. I had a migraine with aura the other day and by the end of the day -I can really feel the strain on my eyes.
My doc seems to think if it is what I officially get diagnosed with that it is pretty manageable. Some of the stories I've heard are kind of scary though... I'd like to hear what you guys think from your POV.
Thanks and God Bless :)
Welcome. You actually sound like you have had a fairly recent onset. Many people take years to get diagnosed and others are still struggling. It sure sounds like MG but each MG case is different and only a doctor can tell you for sure. Still doctors miss it. I have just recently started having eye symptoms and was diagnosed Oct. 2011. Mainly with changing gaze from close to distant or vice versa. I also have asthma and 2 forms of arthritis. As a few folks around here say, autoimmune diseases tend to run in packs.
As far as the labs I have never had anything show up in blood work. That is often referred to as seronegative and is only found in a smaller group of MG patients like not having ptosis (droopy eyelid) which I also do not have.
With the Mestinon try to take it with food. At first it did not affect my stomach but as the dosage increased so did the stomach problems. Which brings me to the second point. Most people have to work to find the right dose for them. I am up to 60mg every 3 hours while awake. I can often tell when the med is wearing off before the alarm goes off. Try and rest and save energy where you can. Full rest with absolutely no movement is best for me. 30 min to an hour helps on most days. On harder days I need more. You have to see what works for you.
No one can predict how MG will affect you or how you can manage it in your life. What I can say is there is a lot of knowledge here. How to save energy. The best questions to ask your doctors. What symptoms others have etc.
Keep reaching out and use what you can for your life.
My most positive thoughts are with you.
Kimber
As YOU mentioned your faith in God, let me say that God has a purpose in allowing these things in our lives even if we don't see it right away. When I don't understand the situation, I rely on the principles of God: God knows too much to ever be wrong, and He loves me too much to ever be mean. God bless you on your journey, and someday, it will all be made right.
I agree, I am glad your primary doctor even knew of mg. Where I go I am her only mg patient, I am also seronegative. I was diagnosed 3 years ago. Hang in there , good luck on getting answers and the right Meds. Let us know how you are doing.
Annette
So glad you found our wonderful group. You will find the group consisting of all ages and all over the world. You will find the group very knowledgeable, willing to share their own experiences and very caring.
I am so sorry for the reason that brought you to our group. Congratulations on recognizing the need to ask questions. Advocating for you self with any medical condition is extremely important and even more so with a rare disease.
As to your condition and possible diagnosis; I would recommend that you seek out a neurologist with knowledge and EXPERIENCE with MG. All neurologist will say they acknowledgeable about MG. However it is difficult to find the doctor with experience, which is very important.
I see you are in AR. You may wish to do another post asking our members if anyone in your area could recommend a neurologist. Finding the right neurologist is extremely important. Many of us travel several hundred miles.
I would suggest you consider finding the neurologist right away and then ask you GP to help with a referral. He should ask for an appointment ASAP, then suggest the neurologist to schedule prior to your appointment an EMG and CT with high resolution of the chest.
Those two test with help with a diagnosis. Given that you texted seronegative there is a possibility those test will also be negative. Very important to be prepared. Some neurologist will immediately tell you that you do not have MG. Be prepared to question them about the 15-20% MG patients test negative but are diagnosed by their symptoms. If that happens ask the doctor for a differential diagnosis and reasons why.
Your GP has put you on a low dosage of Pyridostigmine, which is okay. However, if you are not getting any positive results, ask him if you can increase to 60 mg three times a day. That is the more common dosage. Pyridostigmine only last for four hours and it will only help reduce you symptoms.
You should continue your education of MG. There are many issues with MG that you will find medical professionals not being aware of. One of the first is the medications that have the potential to aggravate your MG and possibly send you to the hospital. The list of those medications and a wealth of information can be found of the MG My Groups MG Links and News which can be found at http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news. Be sure to click View All.
The Use With Caution Medication List includes Ionic contrast agents, which is used in the CT Chest scan. It is considered a low rest but you will find some of our members who did have a reaction to the contrast. Suggest you always have this list with you and discuss it with your doctors and other medical staff.
You will also find information about EMG testing. Be sure to follow the suggestions concerning preparation of the test; i.e. avoid when possible the use of Pyridostigmine up to 72 hours before the test.
I am reading When Doctors Dont Listen How to Avoid Misdiagnoses and Unnecessary Tests. http://www.amazon.com/gp/product/B008BU6ZAK/ref=kinw_myk_ro_title
As I have already said you need to participate with your doctors and other medical staff in your diagnosis and treatment. I believe you may find this book helpful.
Wishing you the best!
Bruce
As for the mestinon....give it time. I actually did not notice any change on the half dose of 30mg TID. After I went to full dose tho there was for me a huge difference. If you don't respond you may be in a group that is MUSK positive and they find benefit from other medications. It takes time to find exactly the right mix and it can change over time. Signifigant improvement can come with the right meds.
If you read through other's posts here you will gain a lot of insight.
Being so young it may be that your thymus may be a huge culprit in all this and removal may be very beneficial. I can't speak to that as I am in the "older" group. What I hope for you is something that does help.
Also it is wonderful that you have the support of friends and family and faith that will give much strength....not to mention a loving dog who is a wonderful boost to health and companionship.
Keep us posted on how things go....Marie
I appreciate all the good advice. I have a list of stuff to ask my doctor when I go back. For one, I see that beta blockers can make MG worse and I am currently on Metoprolol for high bp control. I'm gonna ask him to put me on something else for that.
The medicine is helping a bit. My eyes have been a little improved the last couple of days. Not a big improvement, but noticeable.
I had a talk with a friend and my pastor. I was reminded that we have faith in what we focus on. I quit putting so much energy into being upset about what is happening and am feeling much better.
Each of your words have been a comfort. God Bless :)
Don't be scared, I think you're in a lucky spot getting help so early on. Everyone is so different, you don't know what's ahead yet, cross that bridge when you come to it. Everything will be so much easier with the support of this group.