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Myasthenia gravis, ever heard of it? I had not until yesterday.

Posted Tuesday, November 29, 2011, at 10:35 AM

Well, it is not a newly identified disorder but for SOME reason, my friend has been diagnosed and treated as having Parkinson's for almost 20 years and guess what, it was not Parkinson's.

Over the years he has been to doctors here in Tennessee, Florida and New York but only recently has someone tested for this Myasthenia gravis. A New York doctor told him it was NOT Parkinson's, but never went further. Instead he told him he would just have to live with it.

During the past year+ he has been hospitalized, treated for asthma and on oxygen 24-7 but no one tested for Myasthenia gravis. Why? We don't know but it is not a new condition.

Maybe since it is normally found in women or men over 60, but when they found out what it was not, someone should have considered searching more since the symptoms described are an exact description of what my friend was experiencing. http://www.ncbi.nlm.nih.gov/pubmedhealth...

Previous treatment did nothing and by going so long without proper treatment, the condition has taken a toll that can not be reversed. It is not curable, but it is controllable to some degree.

He called yesterday and after only 4 days on the new medicine, and dropping all the other stuff thrown at him, I could tell immediately that he was feeling better. While his voice was still weak, it had life back in it and he was talking of the future, not death.

If your doctor can not find the reason for you feeling bad, don't just sit there and take it! Take charge and control of you life and push back. If they say "just live with it" or you are imagining it, it is time to change doctors.

Just my opinion.


Comments
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You probably hadn't heard of it because it gets much less exposure than the other major autoimmune disorders.

From what I hear, MG is often not considered unless the drooping eyelid is evident AND that there is a family history of AI issues.

-- Posted by gottago on Tue, Nov 29, 2011, at 11:54 AM

No drooping eyelid to my knowledge. A major concern was that a number of doctors, probably 15+ did not even look at the possibility.

When I heard what he was going through about a year ago, I would not have been surprised if he ended his life. I know he had talked about it several times over the years but he must be stronger that even he thought.

From what I read in the article I referenced here, there often is not much a family history on this particular disease. I am not aware of AI issues but his family has had a bad string of cancer related issues.

-- Posted by stevemills on Tue, Nov 29, 2011, at 5:52 PM

I think it was Kay Rose who done an article about this with an older lady friend of mine a few years back. She's in a local nursing home.

-- Posted by mmp84 on Wed, Nov 30, 2011, at 1:06 PM

Speaking (or typing) as someone who has had MG for almost 30 years I would like to say a couple things.

MG is more common in young women and older men.

The first symptom most often seen is drooping eye lids, but there are many symptoms all leading back to muscle weakness.

It is very common for people to go through a long line of testing that takes years before diagnosis. There are a couple of tests that are considered defining though.

There does not have to be other auto immune issues to be diagnosed. I had none at that time, however...most MG patients do end up with one or more other immune issues in time.

Anyone interested in learning more from MG patients please feel free to join us on Facebook in the group "Myasthenia Gravis Flakes". We are known as snowflakes since each and every one of us has completely individual symptoms and responds to treatment differently. No two alike!

Thank you Mr Mills for helping shed some light on the devil that is Myasthenia Gravis.

-- Posted by Nanner59 on Wed, Nov 30, 2011, at 7:50 PM

Devil may be a really good description of this. He had so many things going wrong it is no wonder the professionals chased so many other things.

Some things did not seem to have any relation to the other, but in the short time he has been on medication, he is noticing these seemingly unrelated problems getting better.

And no two responding to the medication in the same way? What are an insidious ailment.

You are welcome.

-- Posted by stevemills on Wed, Nov 30, 2011, at 7:57 PM

Unbeknown to most, I was given the diagnoses of Myasthenia Gravis in 2004, along with Fybromyalgia syndrome and possible CFS (chronic fatigue syndrome). What led to my diagnoses was in part due to the fact that [during flare-up] my right eye droops significantly....even now, nearly eight years later. My drooping eye has become one of the most noticeable tell-tale signs that I am about to have a flare-up or am in full flare-up. My family has learned to read my body over the years and it's just become a way of life anymore.

Aside from feeling tired, weak and sometimes depressed, I've noticed the biggest difficulty I have is trying to hold my arms above my head. I used to curl my hair everyday before the illness. Now I rarely, if ever curl my hair because I cannot hold the curling iron above my head (due to the lack of muscle stamina). The same goes for shampooing. If I am in flare-up I have to do a "quickie" wash-up before my arms give out. It can make many basic day-to-day jobs seem overwhelming and unachievable.

I'm sharing my story because I want others living with "silent illness" to know that it does not have to define who we are. People who learn of my disabilities/limitations are often very surprised and say "I would have never known it," because I don't let it keep me down. Yes, there are days I can barely move or get out of bed...sometimes I struggle to walk, and I have periodic injections in my spine for back pain...but I make the most of the days that I can move and I don't let it break me the rest of the time. I live with pain everyday and I know I'll never run a marathon, or even hold a full-time job again...but I can still give my family all the love and support it needs; raise my children to be respectful contributing adults; and share my talent and love of art with others.

The serenity prayer written by theologian Reinhold Niebuhr [which AA and various other support groups have adopted] has always been a favorite of mine since I was a little girl. I think it holds true for anyone living with an illness or limitation:

God, grant me the serenity to accept the things I cannot change,

Courage to change the things I can,

And wisdom to know the difference.

The philosopher W.W. Bartley offers a similar sentiment which I've since adopted as an adult living with illness:

For every ailment under the sun

There is a remedy, or there is none;

If there be one, try to find it;

If there be none, never mind it.

For anyone who needs a listening ear, a shoulder to cry on, or a helping hand from a person who will never judge you, feel free to contact me anytime.

-- Posted by shawna.jones on Wed, Dec 7, 2011, at 8:38 PM

Thank you for sharing Shawna. I presume the Chronic Fatigue and Fybromyalgia were "guesses" until they determined the Myasthenia Gravis?

My friend has had chronic kidney issues, tremors, weakness, extreme tiredness, etc. for years. His voice had almost become a whisper and his thought process was constantly foggy.

With the proper medicine and the removal of much of the "other" medicine, he has improved daily. He does not expect to run a marathon either but being a single man, he would at least like to have enough energy to be able to date again.

-- Posted by stevemills on Wed, Dec 7, 2011, at 8:55 PM

Hi Steve. The CFS was basically an "educated guess" and not a definitive diagnoses. The Fybromyalgia was diagnosed by both my neurologist and a rheumatologist using the medical guideline for 'pressure point sensitivity,' depression, sleep disorder, weakness, etc. A diagnoses of sjogren's disorder was added last year, after I began presenting with numerous mouth ulcers, dry eyes and other symptoms.

It's been an ongoing battle for seven years...good days, bad days. I began weaning myself off of pharmaceutical medicine about a year after my stroke and started trying acclaimed herbal remedies. They seem to benefit me more than most medications, but I still need to keep pain pills on hand, as well as anti-depressants and arthritis medicine (and Ambien at times for insomnia). I no longer run to my doctor every time I feel bad, because even as wonderful as my doctor is, there isn't much more that can be done to 'improve' me. I've accepted that I have an illness, but it does not define me. And although it limits me, it does not stop me.

Your friend sounds like a brave man to keep pushing forward until someone finally recognized his illness for what it is. I hope this instills in him a renewed optimism and hope for the future. I wish you both all the best.

-- Posted by shawna.jones on Thu, Dec 8, 2011, at 10:41 PM

I too have weaned myself off most doctors, and medicine from behind the counter except for one heart-rate/blood pressure medicine and even that I cut in half. BP is OK so....

I self-diagnosed myself with the "winter blues". I know they have a name for it, but I just choose not to use it. A doctor gave me behind-the-counter meds and they almost drove me bonkers. I use St. John's Wort and do just fine.

At least knowing why things are out of whack helps my friend immensely. It was a long frustrating chase, as you well know.

Is the test for Myasthenia Gravis expensive or complicated? Since it mimics so many other disorders, why not test for it early on so they can then narrow things down?

All but one doctor was sure it was Parkinson's, but it wasn't, so it by now you would think they would have a way to shorten the search.

-- Posted by stevemills on Fri, Dec 9, 2011, at 8:04 AM


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Steve Mills and his wife have one daughter and live on a farm outside of Bell Buckle. They previously owned two coffee/ice cream shops, currently operate an internet sales company and teach classes, but his primary job involves the paper industry worldwide. Hobbies and interests lie in gardening, photography, recorded music and of course, their pets.