Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 09-04-2016, 09:14 AM #1
Jane1 Jane1 is offline
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Angry Mike's other sister surfaces with strange symptoms

I have held myself back from admitting that I may have an mg problem. My husband has had medical problems for a year and my concentration has been on him. Also, was assigned to use military medicine until I reached 65. I didn't have the energy to endure the many trips to the dispensary to obtain a referral for each specialist. So I procrastinated. For a year now I have had double vision that just seems to get worse. I have experienced weakness in my arms and legs at the most in opportune times. For instance putting arms over head to reach a cabinet or brush hair. Once it was all I could do to run my belt through the belt loops. Usually when I am walking it takes me by surprise that my leg muscles will suddenly feel like jelly or concrete blocks. At times I have had to pull myself up stairs with the bannister. Also, at times I have had to leave the checkout line in a store to find a place to sit. In the past three months I have totally lost my voice twice while talking. It is scary and so embarrassing but my voice comes back after a few minutes. I blamed it on dry mouth. I have also found it to be impossible to swallow bread, crackers or anything dry. I blamed it on dry mouth but had my esophagus checked during my last endoscopy and it was normal. I used to be very active and walked at least a mile a day. I have now sold my kayak and four wheeler because they just exhaust me to no end. I actually feel that we may need to consider a retirement village because maintaining the house and boat is killing me. (We did hire someone to do the yard)

Five months ago I began seeing a new Dr on Medicare. I explained the weakness, fatigue, family history, and double vision. After normal CBC, normal chest X-ray, normal mammogram; he was confused so he ordered another chest X-ray. I live in Panama City, FL with limited medical professionals. I made an appointment to see an ophthalmologist who specializes in double vision. What a breath of fresh air. I have cataracts that will be corrected this month. He was alarmed about something he saw in my eyes so he ordered the blood test for mg and set me up with a new pcp who I see this month. As you all know my brother and sister both tested negative for mg at first. So I conclude that I have tried to rationalize my symptoms away to old age (65);however, I don't feel that I should feel this badly. I used to work gung ho on a project all day and rest. Now it takes me weeks to wash the motor home. I work for five, sit down for five with a cool rag and drink, and I am restored to work another five. I do this for about an hour until I feel I may fall if I continue. Not normal. I have had what I call severe pain in my neck off and on for over a year. The pain comes when I am stressed, traveling, or have overdone it. Had Orthopedic X-ray and he found only mild Arthritis and sent me to a pain specialist who I quit seeing. The only thing that has helped the neck pain is to recline back in the recliner with my head supported and very still.

So this is my story and I am sticking to it. My mother, two of her sisters, my brother and my baby sister have mg. Don't know if that is what I have, but I have something.
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Old 09-04-2016, 01:03 PM #2
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It does sound very much like you could have MG. But no one can really tell until you see a doctor, and be diagnosed properly.
In my opinion, you need an appt. with a Nuero and hopefully get a proper diagnoses. MG is tricky and only the proper test can tell for sure. My first Nuero tested for everything, except MG,(I don't know why) and told I was good, must be dry mouth.
I ask her later, and was not really given an answer!!!
Good luck and let us know.
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Old 09-04-2016, 05:45 PM #3
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Confused I forgot to add

That in the evening and at night I bite the inside of my cheek until I have sore spots in my mouth. How could I ever explain these strange symptoms to a doctor?
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Old 09-04-2016, 08:54 PM #4
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Well, Jane, I can't say that I'm surprised!

MG does run in some families. You guys hit the jackpot. Now you have to be on the lookout for any children to have symptoms as well.

Don't get too down. There are treatments that can help you regain some strength and get back to doing some things, as I'm sure you know already.

It sure sounds like MG. Why? Because what you are describing is fatigable muscle weakness, the hallmark of MG. Static weakness, such as that in polymyositis, doesn't get worse and then improve with rest. Any of the 640 skeletal muscles can be affected by MG. Fun, right?!

If you do have MG, learn as much as you can! Home

Don't push yourself! That's the worst thing you can do with MG, besides ignoring that it exists.

I'm really sorry that you're sick. You're lucky in a way that you have two siblings who have gone through it with MG. They can tell you what has worked or what hasn't, or any complications they've experienced.

Don't be too down about it, though. Wait until you get a diagnosis and then figure out what treatments are right for you. Adapting a life can be fun, actually. Use those disability carts in the stores. Not a 4-wheeler, but better than walking! Maybe you do have to change things. Reinvent your life, then!

Ask as many questions as you need to. There's a lot to learn about MG. In the meantime, take it easy!!! Stay out of the heat and rest up.

Annie
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Old 11-16-2016, 06:49 PM #5
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Man oh man. I have issues. The biggest being my eyes are still seeing double and blurry, so I can't see how to start a new thread. I had more blood labs testing for myasthenia and Musk. All tests came back negative. I am taking 60 mg mestinon 3 times a day. The swallowing difficulties are much better and my eyes are better until after lunch. Then I begin to see double and things appear blurry. I have asked the neurologist to refer me to a neuro ophthalmologist. I feel tempted to quit taking the mestinon and go about my merry way, but not being able to see well in the afternoon and evenings is driving me crazy. I also can't drive at night or for much longer than 45 minutes. Rant over and so discouraged
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Old 11-16-2016, 09:04 PM #6
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Hi Sis,
My first blood work was neg. Then it got worse after that. Saw my neuro today and he put me back on IVIG. Been 3 years since my last one. Scheduling is going to be tough now with Mary getting 14 radiation treatments. Hang in there.
Bubba
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Old 11-16-2016, 11:03 PM #7
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Hi, Jane. Ditto on what Mike said. Also, did they run the main CMS tests? Those are blood tests as well.

If you can't drive far, that's classic MG/CMS. In fact, if you drive somewhere and socialize for a while, driving back home can be similar to driving drunk. Response time is reduced, vision is worse, and muscles are weaker.

You're not the only one who has done that thing where they think Mestinon isn't working or what's the point or I give up or whatever! The effect of Mestinon is in direct proportion to what you do. If you do a little, its effect is great. The more you do, the less impact it has.

Have you talked to your docs about the CMS tests? What about the LEMS tests?

Are you on any drugs that may be interfering with the test results? They do vary greatly over time.

It helps me to drive with my prescription sunglasses on. It reduces glare and rests my eyes. I also shoot the AC at my face, sometimes even in colder months.

Please don't be discouraged! It's really important that they figure out exactly what is going on before they throw a bunch of drug options at you.

Here is the problem, if you do have MG. Not having sufficient treatment puts you at risk. And without that, the disease does progress. I'm at a point where I'm fairly concerned about the lack of treatment and how my MG is becoming worse. Have you ever had arms so weak that they have to be rested for quite a while for them to stop shaking?

What are your current symptoms, other than what you described? Do you mind sharing?

This disease is fairly relentless. Sure, there are those who are adequately treated and can live an okay life. But there are those of us who have to reduce what it means to live just to exist every day. OMG, I'm being a bummer!!!

Call your docs and ask for those other tests. They can send them off to Mayo (Rochester, MN is the best).

I've found that in order to balance the bad of MG, I've had to up the amount of good or easy in my life. It's truly a fine art form to adjust one's life to MG. Some days, I just don't succeed at it!

I hope you and your docs can make some conclusions about what is going on soon. It's no fun to live in limbo!


Annie
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Old 11-16-2016, 11:04 PM #8
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Quote:
Originally Posted by Jane1 View Post
Man oh man. I have issues. The biggest being my eyes are still seeing double and blurry, so I can't see how to start a new thread. I had more blood labs testing for myasthenia and Musk. All tests came back negative. I am taking 60 mg mestinon 3 times a day. The swallowing difficulties are much better and my eyes are better until after lunch. Then I begin to see double and things appear blurry. I have asked the neurologist to refer me to a neuro ophthalmologist. I feel tempted to quit taking the mestinon and go about my merry way, but not being able to see well in the afternoon and evenings is driving me crazy. I also can't drive at night or for much longer than 45 minutes. Rant over and so discouraged
I have bad double vision too. Realize that unlike other symptoms that are only caused by the MG, the double vision is a two fold problem. Your eyes and brain have gotten used to your eyes just loosing focus. Your eye muscles are out of shape and your brain let's them off the hook. You have to find a dose of Mestinon that allows you to focus as long as possible in the day. Then it is matter of your eyes getting back in shape and forcing them to focus and not zone out.


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Old 11-16-2016, 11:13 PM #9
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I forgot to add.

In 6 month I went from taking 90mg of Mestinon a day to taking a 180mg time span and 300mg of the regular. My eyes are a little sore (getting back in shape) but my vision is much better. Neuros usually will wait for you to request an increase in dosage, since higher doses can lead to diarrhoea. I recommend trying the Timespan($$$$) or just asking for an increase in normal dosage.
Also, regular Mestinon only stays in your system for about 4 hours. You should try to take it in 4 hour intervals if you want to stay 'even'. I take mine every 3 hours. Hope this helps.


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Old 11-17-2016, 12:35 AM #10
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I would like to correct a couple of your statements, SIM52.

First, Mestinon kicks in after about 30 minutes. Two hours after that it wears off. So there really only is a matter of two hours of use.

Also, MG has absolutely nothing to do with the brain. No matter of plasticity or adapting of the brain will alter our weak muscles enough to refocus them. Mestinon is also not normally the best drug to address double vision.

One can't "force" the eye muscles to become strong enough so that the left and right eye muscles focus equally. Overdosing with Mestinon is not a smart thing, either. Your eyes could be "sore" because the muscles are being overdosed. Just as muscles without enough acetylcholine can twitch, cramp, or spasm, the same thing happens with too much of it.

Not everyone with MG is the same. Some people can handle a higher dose of Mestinon, or take it more often, but others can't.

Jane is pretty much a newbie, and is not definitively diagnosed. She needs the most accurate information she can have. Also, it is always best to consult with a neurologist before making any drug changes.

Well, that's more than two things!

I appreciate your viewpoints, but we do need to be as accurate as possible in relaying them. Thanks.

Annie
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