Myasthenia Gravis Member Introductions

#21

I am a 47 yr old female diagnosed with myasthenia gravis in 2000

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#22

My name is Eliana Ulloa and I am interested in this condition because I was diagnose with MG a year in a half ago. I would like to learn more about it and connect with others.

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#23

I have been 14 years myathenia gravis. I need connect to who have been myathenia gravis and looking for clinic or doctor at Alameda county.

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#24

My name is Wez and I am 45 years old. I was diagnosed with MG about 1 year ago with a lot of ups and downs. This disease was misdiagnosed for 3 years before that. I want to know if anyone has had a thymectomy and if so has it improved you life? I have to quit smoking because of this disease. Anyone out there with a similar experience?

Thank You,
WEZ

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#25

I’ve had MG for over 4 years now. It has really changed my life. At first for the worst but now for the best. I live my life to the fullest and enjoy as much as I can!

I’m an advocate and blogger for MG and other chronic autoimmune diseases.

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#26

I have MG… I don’t fully understand my disease, and want to learn more from other people who have the disease. I also have thyroid eye diease.

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#27

My Best friend has been diagnosed with MG, and I want to know everything there is to know about it. And most of all to do everything I can to support her.

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#28

hi dee i have mg and would to know more about it and how to handle it

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#29

I am a 27 year old mother of a beautiful 21 mth old little girl named Payton. I am engaged to be married in October and just this past February I was diagnosed with Ocular Myasthenia Gravis. After being put on Mestinon and Predinisone I started feeling weakness in my neck and arms and felt no relief in my eyes. Just 2 mths. ago my neurologist said that I had progressed into Generalized MG. Two days ago was the first time I completely couldn’t use my arms to open a door. I am freaked out and don’t know what to expect. Since then I have been emotionally wrecked and have felt more weak then ever before. Even typing bothers me. I want to know what to expect. How am I supposed to keep doing my job? What kinds of things have worked for other people with my same symptoms. Help me please, because I am freaking out.

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#30

I was recently diagnosed with Myasthenia Gravis and am
learning to live with it. It is very difficult and I would like
to be able to discuss what I am experiencing with others
to see if what I am experiencing is normal for this disease.

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#31

I was dx’d w/MG in 1999. In Jan. 2000, I had a thymectomy. Since that time, I maintain the disease w/Mestinon and Imuran.

My symptoms are complex in that along with MG, I live with lupus, Graves’ disease and severe osteoarthritis.

Via neuropsychological testing for 4 consecutive years, tests revealed a visual/audio spatial disorder and slowed motor responses.

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#32

My wife had her thyroid taken out in 2005 in July of 2006 she had the thymas gland removed laproscopicly. Her health is steadily going down hill, Dr’s here have no answers and now her breathing is labored and she can’t stay awake for more than 9-10 hours. Can anyone tell me what the long term is like ? Does this just keep getting worse? Is there any treatments to help get back to normal?

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#33

diagnosed 2006

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#34

I either have MG or something very similar.

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#35

I have Myasthenia Gravis and would like to share and learn from others who also have MG.

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#36

I am 20 years old just found out that I have Myasthenia Gravis. I don’t know anybody with this disease and want to learn more about it and how other’s are dealing with it.

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#37

Two weeks ago, Aug 16, 2007, I was called by my neurologist with the diagnosis of myasthenia gravis (MG). I currently suffer from generalized muscle weakness and fatigue and currently take Mestinon. My follow-up visit with the neurologist is next Fri Sep 7, 2007.

I've just stumbled ;) onto this site and will be working on my story as time allows. I hope to be able to learn and share as I travel down this new road.

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#38

Hi, I’m Karen, and I live in NE Alabama. I was just diagnosed with severe sleep apnea (AHI of 87). They’ve placed me on the CPAP at a pressure of 10, using the nasal mask. They’ve also prescribed me Trazodone and Requip.

I’m 42, very overweight, and have some real problems with depression. I take Prozac for that. I used to drive truck for a living, but have been on disability for 4 years now due to Myasthenia Gravis. Alot of my depression stems from not being able to work, not feeling useful, I guess. I’ve spent the last 4 years working with animal rescue, but even that’s coming to an end, since I can’t handle the stress anymore. I’m not allowed to drive at all, and since hubby’s still driving truck, we’ve had to have his brother and wife move in to live with us, so that I’m not alone.

How do you get through this? I mean, how do you get past the feelings of uselessness that accompany things like this? I really want to know…cause sometimes it’s more than I can bear.

I know…I’m whining…it’s frustrating, tho, not knowing what’s going to happen next. I’m hoping to learn a few things here, and maybe it will lift some of this cloud I feel like I’m under. Thanks for letting me join, and I look forward to hearing from any of you.

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#39

Hi Karen~

I know what you mean about not feeling useful. I deal with that as well. When I had to quit a job that I loved one year ago September, it was very, very difficult. And, yes, I have heard a million times that we are not supposed to be ‘human doings’ but instead be ‘human beings.’ Unfortunately, when one of the first questions one is asked is “what do you do?” it is hard to keep that in context.

I, myself do not have Myasthenia Gravis … instead, I have Lambert-Eaton Mysathenic Syndrome (LEMS) which is rather similar. The difference is that with MG the muscles stop listening to the nerves, with LEMS the nerves stop talking to the muscles.

Either way ~ not good.

I hope you find some people here to connect with. Since only about one person in one million has LEMS, I use MG as a place to get information. If there is anything I can do … answers about my experience or whatever ~ please do not hesitate to ask.

Susan

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#40

This is for Karen (Re: how to cope with MG)

Hi, Karen:

My name is Sharry Smith. I live in St. Petersburg, FL, and was dx’d w/MG in 1999-thymectomy in 2000.

Having worked most of my life, just having to retire was an issue itself to deal with; but like you and many others, feelings of guilt, frustration, anger and depression set in.

Karen, remember above all else that this disease is not a result of anything you did wrong. You did not ask for this disease. Only 20 out of every 100,000 people are dx’d each year with MG. I volunteer with the MGFA, Communications Committee, and when I retired in 2001, I helped others who were dealing with MG and the extra-curricular issues that are relevant, but not necessarily justified (like assuming self-worthlessness). THis is not to say that you are not justified in your feelings; we’ve all been there. What I am saying is that it is not just to blame yourself for this.

If you are like many of us, you are probably pretty self-efficient and independant. MG can rob you of feeling this way if you let it. The hardest thing for me to do was “ask” for help when I needed it; accept the fact that I would actually “need” help from time to time. This is easier said than done, as you are obviously discovering. But, Karen, it is do-able.

I remember thinking, “Why me?” and “What am I going to do now?” I felt as though my family would think I was lazy–far from the truth; I was fatigued. Fortunately, my family understands this and has taken it upon themselves to further read up on MG and understand it better.

Karen, the best advice I can offer you is to become an educated patient. Self-education (along with your doctor) cannot be emphasized strongly enough. Read anything you can, but be sure your resource(s) are reliable. Sites such as www.myasthenia.org offers a wealth of information.

There may be an MG chapter near you in Alabama. If you go to the site above, I believe you can choose the state in which you live and find out if there is a chapter.

There is also a list-serve support group called “The Myasthenic Meeting Place” (MMP for short). I do not recall the link at this time, but if you type that into a search engine you will find it. Another good source of support and information is MGnet-Connect.com.

The Myasthenia Gravis Foundation of America, Inc. (MGFA) has a publication called “Foundation Focus.” It comes out three times per year and has a lot of information regarding current research being done on MG, support services, individual stories by other patients and medical health personnel, etc.

If you contact the MGFA, or the chapter in your area, you can inquire as to local meetings, receiving the Foundation Focus newsletter, and/or register to become a member of your local Chapter.

Due to cognitive decline discovered in 2001, I began to seek the counsel of a very good neuropsychologist who treats patients living with chronic illness. She helped me immensely by showing me how to look at my life with MG from “outside the box” with a different perspective on daily issues. I learned that I had to reprioritize the “important and necessary” things I needed to do for the sake of my health, and that involved asking for help, learing not to sweat the small stuff (i.e. dusting the furniture, grocery shopping–which my hubby now takes care of for the most part, etc., etc.)

Karen, do not feel guilty about resting when your body demands it. Listen to your body because only you know how you feel and only you can sense when you’ve reaching your limit on activity, extreme temperatures, etc. Other family members, as they get used to your obvious physical symptoms (i.e. ptosis–eyelid droop, slurred speech, fatigue or any other symptoms that outwardly exhibit themselves), will be more likely to offer their support and help. But if not, ASK, ASK, ASK.

This disease may bruise your pride at first, but you will acclimate, as you become accustomed to the things you are not able to do or do as easily as you used to.

Karen, please feel free to email me anytime you have questions or just want to vent. I do not visit this site on a daily basis, but do receive notices if there are new posts or messages. Otherwise, you may email me at: sharry-smith@tampabay.rr.com.

Take care, Karen, and don’t be shy.

Sincerely
Sharry Smith

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