Well Here is My Story:

Mine is a little backwards from what I've read thus far. Last May, I was diagnosed with a thymoma (malignant). Had it removed (through the side) and went through radation and the whole nine.

I thought all was well. Until about a month ago, I started talking strange. And later, had a hard time breathing at night. Then, I couldnt eat. I thought I had an allergic reaction to something and went to the ER because my breathing was getting worse. After tons of tests, I was diagnosed with MG.

I started Mestinon (60 mg 3x/day) two weeks ago and Prednisone (40mg daily) one week ago. I dont have a hard time breathing anymore. Prior to prednisone, I hadnt sleep in 2 weeks and could barely swallow water. I am sleeping but my speech is still grossly slurred and I am not eating any solid foods. I am currently stuck to Ensure's and yogurt.

I am a mother of a very active 5 year old boy who just started school. I feel frustrated because I cannot talk to his teachers. This is hard for me because I am very educated and quite independent.

I know that everyone is different so answers/opinions are not going to specific to me... but I would like any input you all have to offer. I've asked doctors similar questions but I want opinions of those who live with this day in and out.

*Are you optimistic about improvement?

* How long did it take you to see results once you started taking action toward MG? Which and dosage please.

* Is your speech impaired?

* Did you have your thymus removed? Plan on removing it? Do you believe this helps with less symptoms?

* Do you have children? If so, Are you working regularly?

* What should I expect? I know this question is kind of silly but after reading horror stories I just want to know the reality.

Any advice, encouragement, warning signs, etc would be greatly appreciated. I am very thankful to find people here with similar struggles.

Miss Gomez,
I wanted to say welcome to the group! I am also pretty new here and have learned SOOO much from others who have dealt with this alot longer than I have. I know it is a very frustrating and depressing disease. I have quickly learned I will have good days and bad. Just try to pace yourself whenever possible. My MG is pretty mild but I do have days where I feel like I need to lay down off and on all day then other days I almost feel like my old self. This weekend I felt great and got more accomplished than I have the last 2 months! Hang in there and I'm sure you'll get alot of great input from the others here.
Kendra

Welcome missgomes!

You and I share a very similar story. I started having trouble speaking in December of '08, but was having some slurred speech every once in a while prior to that. It became very severe in December; very nasal with weak tongue movements. I was also diagnosed with a thymoma in June of '09 (took me forever to get the CT scan due to my job, taking time off, etc.). My thymoma was a type AB stage 1, but my doc. considered it to be malignant as well. Smaller thymomas had begun to grow on my thymus- this is why it was considered malignant. I didn't have to have radiation/chemo. 'cause the doc. was sure he got all of it out...

As for the symptoms, I still have slurred/nasal speech often, with barely any ocular involvement. I had my thymoma removed in July of '09 and started taking prednisone, 80 mgs at the end of that month. I'm still waiting to see the full effects; I often still have slurred/nasal speech as well as chest weakness. I'm also taking mestinon 60 mgs every four hours and mestinon sr in the nighttime.

I have found that plasmapheresis is helpful for me, but the positive results are short-lived (2-weeks). My nasal speech disappears at times and I am able to move my tongue enough to speak clearly and eat normal meals. Have you tried this?

I had to stop working due to my speech. I do not have any children and am 26-years old.

My doc. is optimistic about improvement, but it's hard to get lasting effects. I"m really hoping that the prednisone will start working soon.

Is it mainly your tongue that is affected? I wanted to add that my tongue is so severely affected at times that I cannot elevate it to touch my teeth. I can't move food to the back of my mouth to swallow, and have to use my fingers to move the food around in my mouth. When I get plasmapheresis, though, people will say that my voice is pretty much normal aside from being a bit nasal after talking for a while. Also, when my tongue is weak, it looks really pale, fat and 'crimped' at the edges, I guess due to not being able to flex it. Sorry if it's too much info., just wanted to be thorough!

I'm planning on seeing a naturopath to see if that helps. Let me know if you have any other questions!

Nicky

Hi, Miss Gomes. Welcome. This is going to be a bit long but, hey, you asked!

I've had myasthenia my entire life but only found out about it in 2000, was diagnosed in 2001 and found out about the "entire life" thing after looking at my K-12 photos in 2006 (long story). So I've lived 51 years with this disease. No, I don't have it as bad as others do, however, I think that is mostly because I limit my activities. And that is a very important point to make.

If you buy more, you have less money. Same with MG. If you do more, you have less acetylcholine. Our "muscle gas" just runs out, even with Mestinon. So MG is a lot about supply and demand. If you continue to have a hectic schedule, you may need to keep adding on the meds. It's a balance that only you can figure out, with your neurologist.

I take 90 mg. of Mestinon every 3 hours, round the clock. Less when I have my one cup of coffee per day (see the Caffeine/Nightshades post). 10 mg. more when I do activities, per my neuro. I take Mestinon syrup so I can titrate doses easily. And it absorbs more easily. I noticed improvement within 30 minutes of taking it the first time. It kicks in 30 minutes after taking it and wears off about 2 hours later. You get about a good two hours of a boost in acetylcholine from it. Timing activities accordingly helps.

My speech only becomes impaired when I talk a lot, which I don't do much. I can't work and don't have kids. I'm sure you can't exactly use sign language with your kids! Although if you are having a bad day, a "game" of trying to communicate in other ways (computer, writing, etc.) would be a good way to rest your speaking muscles.

I did not have my thymus removed. Others can speak of this better. I opted not to have the invasive surgery - as did the surgeon I consulted with!

Am I optimistic? In general, yes.

This is how I look at MG. Just kidding, although I do scream about it from time to time. MG is an autoimmune disease. So, obviously, my immune system is ticked off. Because of that, I do everything I can to make it happy. I sleep as well as possible, I eat organic foods, keep stress to a minimum, take sensible supplements, alternate activity with rest, stay out of the sun (toxin), see my doctor right away when I get sick, etc. I try to concentrate on what I CAN control. Concentrating on what I can't do due to MG would make me nuts. I hate what the disease has taken from me. I hate that I cant' work or do what I love. But it is my reality and I have to live with it. I'd rather live happily with it then be all depressed about it every day - though depression is a very real component of it for me.

Learn every thing you can about MG. Go to www.myasthenia.org or www.mdausa.org Look at what drugs and foods affect it. Know that extremes of heat and cold will make MG worse. My MG crisis was in the summer, during really hot weather.

What is an MG crisis? It's when your breathing muscles get so weak that you can't breathe well and either need oxygen, Bi-pap and/or intubation. When I had my crisis, I had generalized weakness but because I hadn't been using my voice, it and swallowing issues were spared. From what you say, you would probably have problems swallowing or breathing that sent you to the ER. And that is where you should go if you have problems with those two things or generalized breathing.

If you don't have a pulmonologist, get a good one. Mine is in a hospital setting, which is optimum. When you have a crisis, it is BOTH a neurologist and pulmonologist who care for you. Having baseline breathing tests done is a very good idea. Then they can know your normal. MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) are the tests that specifically measure how well you are breathing in and out and how weak your chest wall muscles are.

A good pulmonologist will walk you around the office with a pulse oximeter on to check how your saturation is while doing something. When MG gets worse, the pulse goes up. The heart is pumping harder to get you enough oxygen. Then when you stop moving, the pulse goes down, as does the oxygen saturation. Then your blood gases will look like you are hyperventilating and uneducated doctors will say you are anxious. You aren't. You can't "exchange" oxygen and carbon dioxide. It's at this point that CO2 starts to build up and you get worse quickly. Too much info?

If you can afford an oximeter, I HIGHLY recommend getting one. Right before my crisis, my O2 stats went down to 94% and would not go up no matter how much I rested. That is a huge warning sign. Others are sudden shortness of breath or any other weakness, not being able to use a muscle like being able to grip something, etc. Anything odd should be reported to your neuro RIGHT AWAY. Don't wait. It's not stupid to call. And if you are getting worse, get to the ER right away. Dial 911. Don't drive yourself.

A support system of family and friends helps a lot. So does a psychologist. Anything like this that changes your entire life needs "management" and as many coping skills as you can get.

Because you had a thymoma, they may want to ask your neuro to run the striated muscle antibody test on you yearly. It can reflect the little bugger coming back. Yes, thymic tissue can grow back.

I'm sure I'm forgetting a number of things. Just keep reading and thinking and TAKING IT EASY! It's a lot to take in and adjust to. If your kids don't understand this, just find a good metaphor to explain it to them. Like gas in the car running out (we run on 1/3 tank every day). Kids are smart, they'll probably get it faster than adults.

I hope this helps. You asked lots of good questions. This is a great group of people who will support you in whatever you need.

Annie

I hate to say welcome to the group but since you are here at least you found people who understand.

Yes I was a mother of an 8 yr old and 3 month old and was a single mother when the MG hit the fan so to speak.

I had a thymectomy in 1991 and was taking all the meds until I went into FULL drug free remission for 17 years.

Sadly my MG is now back but it is back because of other underlying issues. I am optimistic so all is well.

We ALL get mad, sometimes really, really mad but thats OK, we all are here to listen and support each other.

I am not taking any of the meds due to severe allergies to medication {just today at the hosp they had to shoot me up with benadryl and steroids but I am still weak and shaky and itching.}

My voice goes nasal and I lose it all together. I carry I paper that explains my illness and all emergency info for when I can't speak well.

I sometimes have trouble swallowing, not as much now as back in 1991 so I eat when I can. Rest helps as does something cool. I sip cold water when I eat.

I am sure there is more to tell but I am so wore out right now, maybe tomorrow I can write more.. Ohhh and heat, stay away from heat if you can.

Nice to meet you Miss Gomes,
Mother of 2 boys, now men, & grammy of two.
MG never has been under control, very progressive, even with meds.
Thymectomy in 2004, did improve breathing some.
We have a wonderful group here, so full of information & supportive !

Welcome to our little family!

I can't help on the thyrectomy front as Ive not had one, (although if offered tomorrow I would take it!) Ive had normal CT scans of my thymus, plus Im seronegative. So I dont have a confirmed diagnosis yet.

I worked initially, but just got so ill I couldn't continue. It was a job where I was expected to be on my feet 9 hours a day and I had no support from my employers. There were other jobs available they just refused to move me.

I thank my lucky stars I don't have kids. Ive never wanted them. My hat goes off to you ladies and gents that do have them and MG. I find it hard enough coping with my dogs and a husband! Add little people into that mix, I wouldn't cope. I suppose its whatever you are used to.

I really hope that you make some headway soon.

Love
Rach

Hi Miss Gomes,
I am glad that you have found this site because the people are so supportive and informative. I have had symptoms since Aug. 07 and was diagnosed in Nov. 08. I am VERY optimistic about my path with this disease. I have had a few periods where I have been under stress and saw my symptoms get worse. I firmly believe that the right frame of mind and a good support system is key! When I was first diagnosed I was started on Imuran which I take 100mg 1x/day and Mestinon which I take 60mg 5x/day. I had a crisis in January and Prednisone was added to my meds. At one point I was at 100mg 1x/day but now I am down to 5mg 1x/day. I had a thymectomy in Feb. 09. I did not have a thymoma. I have found that my speech, swallowing and breathing have improved greatly since the surgery. My leg, arm and face weakness is still there but not as bad as it once was.
I have three kids 8, 4 and 3. I realize that we have all had to make some sacrifices for my MG. I am no longer working. I did private home daycare but I am no longer to do that. I really just pace myself. If I am going to do something with a lot of walking ie. back to school shopping, I know that I will have to rest for a couple of days afterward.
Right now I am pleased with where I am. I am not my "normal" self but I can swallow and my breathing is okay.
I hope that you get the better soon. I know that I was not a fan of Ensure when I had to have it but I hope you have an easier time with it. Take care ~ Melanie

Hi Miss Gomes! Welcome!

I'll try to keep this short (not one of my strong points).

I've not had a thymectomy (but like Rach would jump at the chance tomorrow if I could). I have a diagnosis of "moderate" MG and take 60 mg of Mestinon every 3 hours, 40 mg of Prednisone alternate days, 150 mg azathioprine daily. I've had Ivig too but the results of that weren't great.

No kids (hopefully someday - I'm 30 so my clock is ticking away) but I work fulltime in a demanding job - I'm a teacher of kids with disabilities and behaviour difficulties. I also volunteer as a Guide Leader and with a few other small local charities.

I am optimistic about improvement, but realistic too. I can live with the way I am now, if you had asked me that question 24 months ago I might have had a different answer.

My Mg was stable for a few years when first diagnosed, but worsened 2 years ago. Once starting the steroids and azathioprine it took about 12 months to really feel strong again.

My speech was impaired when I was at my worst - I used to have to get my pupils to finish reading aloud for me and my voice feels like it's being caught in my throat. This hasn't been an issue since the pred and aza took effect.

My best advice to you is to keep a thorough diary, write down what physical activity you do everyday (even cleaning, cooking etc), what you eat, what you feel like (mentally and physically) and bring it to the doctor's. I did this and realised that the days I felt weak and feel down I wasn't eating bananas - potassium turns out to be a real problem for me but now I know and can do something about it!

If you are worried about the school (which should be understanding) maybe you could print some info off the MGA website and send it with a note. I know as a teacher I would be very open to any way I could help a pupil of mine through a difficult time at home, even if it is just listening.

Good luck with everything and keep us posted!
~Kathy

Thank you all for responding. I feel a little better today after reading these posts. I also am now on 60 mg of Pred so I FINALLY got some sleep last night. I have a cold, too (caught from my little one). I haven't had a cold in years. LOL But I am in good spirits this morning!

Now to replies:

@Nicknerd: I haven't had plasmapheresis yet. I am actually kind of spooked about it. And from what I read, for a week or two of relief, it doesn't sound worth it. But what do I know?? Do you think it was worth it? Does it hurt? I was thinking of saving that for a crisis or something. I only have problems with swallowing, and breathing at night thus far. O and my neck gets weak at night.

@AnnieB~ Pulmonologist?? I had to look that up (don't laugh guys). This is all very overwhelming. I'm on it.


@Joan~ Congrads on your remission. I can only patiently pray that I see that day. I hope you get better soon.

@Rach73~ What is seronegative?

@Melanie: You summed up what I've wanted to hear, "Right frame of mind and good support system is key". When I found out I had to have my thymoma removed and needed radiation, my world turned upside down. I tried to stay positive and I think it worked. Your mind controls your body. If you look down, you go down. I hope to fight MG with the same mind frame.


@ScotsKat~ Wonderful that you're working. You're a great motivator!!

Ok.. I have a couple more questions if you don't mind:

* Imuran vs prednisone. It seems as though most are on one or the other and then if their symptoms get worse the other is added. Is this the case. And what do you think makes Docs prescribe one over the other?


*Have you all had plasmapheresis? or IVIG? Comments.


Well, I am so overwhelmed with joy that you have responded to me. I wish you all a great weekend if I do not return before then. Rest up and talk to you soon!