Remission in MG
 

I wanted to bring this topic up for discussion. I have no idea how much any of you know about MG and remission. I want to clarify a few things just in case you don't have a lot of knowledge of it.

There are very few people who ever have all out drug-free remission. That means absolutely no drugs, not even Mestinon.

Then there is drug-induced remission by taking Mestinon, Pred, Imuran, Cellcept, Methotrexate, Prograf, IVIG, Plasmapheresis, etc. More people have this but definitely not everyone.

There are not a lot of large studies on this issue. There certainly are not studies that show whether a thymectomy alone (or with other drugs) can achieve remission all by itself, though I believe UNC is working on that.

I realize that there are people with MG who don't care how they get to remission as long as they get there. It can often take more than one drug, like a combo of Pred and Imuran for example, to get there. And that brings with it LOTS of side effects.

We all want a better quality of life, which really is the goal of any of these drugs (by making MG get better). Some of these drugs, however, come with their own impacts on health that can reduce your quality of life even if your MG symptoms are reduced or gone.

I am not saying that one way to treat MG is better than any other. That is up to you and your doctors. What I want to do is point out that remission, while awfully enticing, may come at an even greater cost to some people. So the goal shouldn't only be remission - at least for me - but to have the best quality of life you can.

False hope is not good. Hope balanced with knowledge and a good neurologist is better. And pulmonololgist and primary doctor and any other doctor you need. Again, at least in my opinion.

I wish all of you could have an all out, drug-free remission

Annie

Some of the many articles on the topic:

http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0

http://content.karger.com/ProdukteDB...asp?Doi=114612

http://www.ingentaconnect.com/conten...00006/art00009

http://www.roche-trials.com/patient/...ts/stur33.html

MG and Drugs:

http://neuromuscular.wustl.edu/mtime/mgrx.html

Annie, Hi. I read your post and a few things come to mind. If I may ask, What diagnosis/diagnoses do you have?? MG I am assuming, yes?? Any others going on?? You know we tend to have a list of things.

what level of disability has MG placed you at?? What can you do/not do?? IE: how far can you walk?? How long can you read a book?? How long can you speak?? Can you cook/clean/ADLs??
Next question, yes I am to nosey I know but I like to get a handle on where folks are coming from in discussions, what medications and/or treatments are you on currently?? What have you tried in the past??
You never talk about yourself. You are such a tonic for so many. I am sure we'd all like to get a bit of a view of where you are coming from.
hugs

I'll keep that for another post, if you don't mind - want to keep this on-topic. I do talk about myself though, just not a lot. For example, I just talked about my dog having a tooth abscess. Thanks for asking.

Where am I coming from? I guess because I'm a daughter of two teachers and a teacher myself, that's what I like: knowledge.

Annie

I have had MG (seropositive) my entire life but only diagnosed in 2001. Might have CMS too - long story. Am only on Mestinon for a lot of reasons I'd rather not get into. I can't have the other drugs/treatments; at least not until it's an absolute necessity.

Remission!
 

Hi Annie

First thing I would like to say is...:Good-Post:

Thank you so much for this post...very educational especially to a newbie like me. There is alot of knowledge on these boards and I appreciate your efforts here.

I clicked on the last link for the MG & drug information...That was very educational to me. I hear alot of people on here talk about all kinds of meds and this really helped me to understand what each one does for our ongoing battle with MG.



One thing is for sure, this disease is strange!....It treats each person different for sure.

Have a blessed day!
JJ

Erin, I doubt anyone would ever think you are a Pollyanna type! :rolleyes: I for one think you are a very positive person, even with all you have going on.

JJ, Thanks. I think this is one topic that isn't talked about too much by doctors. Probably because there are no easy answers. Everyone reacts differently, just like you said.

My quality of life right now is in the toilet but not as much because of MG (though that has a big impact) but because of having bad PVC's every time I exert; even bending over. I won't do cardiac ablation because it's dangerous and I won't take the drug that has killed like 250,000 people. So I have to accept this quality of life for the moment. There you go, Deb, a little bit of sharing. It's very hard for me to talk about because it makes me so damn angry. All this because of a stupid, generic birth control pill, switched from a brand name by my pharmacy, that caused a high BP.

:icecream: That helps.

Annie

For my two cents worth, LOL.
All treatments medications therapies have risks that come with them. The risk/benefit ratio is something our docs have to play with every day of their practice. (called practice cause it is NOT an exact science, the medical community is always learning, always growing)
So with each thing you put in your body it is a crap shoot. There is the expected outcomes and then the issues that arise that are not helpful or even deleterious to us.
FYI: one side effect of tylenol??? a headache!! LOL how's that for an illustration??
We all have to work with our docs to get to a place whether it be remission or improved quality of life. To do this one must be willing to explore the options available to us. This is the whole reason we go to the docs. We can sit home and wring our hands and poor me and look at the negative POSSIBLE side effects and die or we can get off our butts and be aggressive in seeking that "magic mix" that is out there for each of us. For some who are lucky it means mestinon and nothing else. For others a touch of prednisone. Still others its an all out war.
Another thing we must remember, the side effects from most any treatment can be counteracted by another drug/treatment. Can be totally mitigated. Yes it means another pill, but do you want to get better or not?? Again comes down to sitting and wringing your hands or working and turning over every stone. Yes these treatments/drugs can possibly present other issues for us to deal with, but that is part of that risk/benefit game.
We have to remeember that the list of negatives is only that. A list. If ONE single person reports that they got a hang nail while taking aspirin then the PDR has to list it. Does that mean that if you take Aspirin you will get a hang nail?? Chances are much better that you will NOT than that you will. If Aspirin caused hangnails as a rule, they would have to pull it from the shelves I imagine or have a black box warning on it at least.
Medications and treatments are all those of us who are sick have.
My own regimen is daunting and semi effective, but without it, I am in resp failure.
IVIG 60G every monday
60mg pred qam
cyclo 200mg twice a day
mestinon 60mg 2po every 4 hours
mestinon ts 1 at bedtime
and one other that is being "tested" so will just say another pill each day
Drugs I have tried and failed:
Plasma exchanges weekly (worked well until blood count stopped recovering and became severely anemic and need transfusions about every 4 weeks or so.
Imuran, cell cept, prograf and one other I can't remember the name of, but it had to be compounded and was similar to what is used to poison birds.
My best advice, find a doc who you trust to lead the ship. Do what he/she recommends and deal with what happens if anything.
You will never know if you don't try!!
Some folks of course can't take some of the treatments due to a multiplicity of medical issues outside of the MG, I think that is what Annie was saying about herself in her quest for cure/remission/improved quality of life. And that is a whole nuther issue. So again, find a doc you trust. work with him/her and get the best possible treatments to get the best possible outcome.
hugs

Annie, hun, don't let it get you angry!! :grouphug: We are all here to lean on one another!! To share and perhaps lighten our mental load by sharing. Many of us have other medical issues too. Perhaps someone here has a similar issue and would be able to share his/her experiences with us so we can all shore up our fellow "groupies" here when they are down. So come here and share your frustrations/struggles/successes with us. It is not fair for you to be such a staunch supporter of us and you not get any!!
HUGS

Good Post Annie,

"I" was one of the rare few who went into a drug free remission, I was in remission for 17 years, I worked, I volunteered, I would ride my bike for 22 miles at a stretch, I walked and played and am thankful I did.

I came out of remission this past year due to inhaling some chemicals, I now just use mestinon as I too can't take the other meds.

I hate not being able to do the things I did before and I get "mad" at my MG but I am lucky in the fact that I can get up every morning, yes I get weak but I look at others here and I have to say I am doing good!

Joan, half the battle is our attitudes!! We have to be our own cheerleaders. We have to get up and say ya know what my legs stink today, but I still have them and tomorrow they may be better. I am thankful each day I am here is another day I can see my kids grown up.
I can't walk anymore, well to a bsc is all with much effort. But I can get around in my electric wheelchair. I am working on getting a very nice fancy one now. Someone asked me how I could stand it. Simple, it is either that or I don't get to go out and play!! LOL Without wheels I am relegated to the bed. Without wheels I can't even get a cold soda outta the fridge for myself. Without wheels I have NO independence. My arms have other issues now so I can't use the left one to use my walker anymore.
Adapt or give up. Keep finding that reason to get up each day. Keep looking at the glass as half full. No I too am not a pollyanna. I have a full and sometimes horrifying grasp of reality with regards to my health and what my body is doing..............I just choose to take the huge lemons and make gallons of lemonaide!! LOL
Great attitude girl!!
hugs

You're right on that, Deb. Attitude is very important. I'm sorry you are in a scooter (is that right?). Nope, that's not pity either. It's just sad that your MG is so bad.

There are times, however, when life and diseases are just too overwhelming. And having a disease includes all those lovely phases of grief, including anger. I think we have to allow ourselves to go through whatever phase we need to in order to heal, physically, emotionally, spiritually, economically . . .

I think I'm in the "exhaustion" phase, even though that isn't one of them. Too much doctoring, too little power over my life, too little of everything. Nope, not a pity party, just exhausted.

Annie

life and quality of life
 

Hi Annie and all,

I think that's an excellent topic.

a few years ago, I had a patient with refractory leukemia, which means that there was no more treatment me or any one else in the world could give him, to get him into remission, after his second relapse.

I came to see him with our fellow, and when we walked out of his room, the fellow asked me-how could you talk to him like that? why did you tell him that there is no more effective treatment you could give him, why didn't you just give him some mild chemotherapy pills, that would keep him stable for a while, and not tell him this?

but, I knew my patient, I have been taking care of him for almost 3 years, and I knew that he is someone that wants to know the truth, and also I promised him that I am going to do every thing possible so that he can have the best quality of life.

he lived for another six months, in which he went on trips with his family, ate in the resteraunts he loved, and overall had a very reasonable quality of life. when he died his wife thanked me and said that until the very last day of his life, he kept on being the same person he always was.

I gave him mild treatment that kept his blood counts reasonably stable, blood transfusions as needed, minimized the time he spent in the hospital each time he had an infection that required IV antibiotics, and encouraged him to use what ever he felt could make him feel better, physically and emotionally.

I was also there for him and his family in the inevitable times of despair, and I constantly checked the NIH site, and with colleagues regarding any possible experimental treatment that would be available.

medicine with all its advances has its limitations, and even if a patient is given the best possible treatment, it does not gurantee remission. some patients, like myself, just don't respond to the "miracles" of modern medicine.

and yes, having to use a wheel chair is not the end of the world.
although, it does take a period of adjustment, (for me it took way too long, and a very knowledgable and experienced neurologist, who just said it to me, as if it was obvious- why don't you just use a wheelchair if it's hard for you to walk? and thanks to him- I was able to see more then one picture in a musuem for the first time in three years!)


yesterday, one of my patient's grandsons, a cute 5 year old, saw me in my wheel chair, and stared at me. his mother, who felt uneasy said to me- oh, he just doesn't like white coats. so, I said to him- that's fine, I'll make sure that next time you come I have a pink coat instead, would that be OK?

so after, we "broke the ice" ,he asked me-why, if you are a doctor, you are sitting in a chair like this? reasonable question, no doubt. doctors are supposed to be healthy, and patients are the ones that use wheelchairs.

so, we had a long discussion about wheels, and how they help us get to places that are too far for us to walk, and how for some people "too far" is different then for others.

and then he agreed to let me take care of his gradfather to make him stronger and able to play with him again.

and yes, you are completely right Annie, sometimes we tend to forget what are the tools and what are the goals.

remission is a tool for a longer life, and a better quality of life. it is not a goal in itself. and some can have a very good remission and still a pretty lousy quality of life, due to intolerable side effects, or inability to adjust to the relatively minor symptoms that they still have, or other reasons, and others, may have a pretty reasonable quality of life, even though they are not in remission.

and I am sorry to hear that you are in the "exuhsted phase". there definitely is a phase like that. I have seen it many times and have also experienced it myself.

but, what I say to myself in those times is 1. even a well-trained army needs some time to rest in between battles, 2. you can't run a marathon every day (this is something that one of my pulmonologists, who is also a marathon trainer said to me once, and I really liked it), 3. a person who was able to climb out of a dungeon is equipped to be a mountain climber.

and I alway manage to find some new hope, after the previous one was violently shattered, by one of the less sensitive, or more arrogant members of my profession, or even by the reality of life itself.

a year ago, I was quite sure that I will never be able to go back to the work that I love. and now, I am about to go to present the results of my collaborative research in a conference abroad, even though I am not in remission and not even near it.

so yes, there is always some hope out there.

alice

Hi
 

I think this is a good topic Annie. And thanks to everyone who has already posted, some real food for thought.

When I first got ill nearly three years ago, though looking back it was probably far longer ago than that, I dreamed of remission. I thought as the medical profession and the MGA literature all said that most people with MG lead a normal life all I would have to do was take these magic pills (mestinon) every 4 hours and eventually it would all go away and life would return to norrmal.

Now I dream for a better quality of life, remission to me at the moment seems like asking for the moon. To be able to walk my dogs, just for 15 mins, or to go out with friends to the cinema or for a meal or even just to be able to do something other than sit in a chair and watch the world go by, would be better than what I have now.

I know all drugs have risks, I know prednislone isn't good for you in the long term. But given the opportunity to try these drugs and get some more quality of life would be better than not trying at all.

Remission is what everyone hopes for, in reality for me what I hope for is a life that contributes and is rewarding. Two things I have in little quantity at the moment.

Love
Rach

Thanks so much, Annie, for posting this topic and for the links. Thanks to everyone for all your thoughts. I want to learn as much as I can about this disease and everything surrounding it so I can make education decisions about my care. This forum has helped educate me more than anything else I've found since I was diagnosed in 2006.

I don't know why, but remission seems to be outside my realm of possibilities in my mind. My dream would be able to walk through the mall or the grocery store like a normal person. :) That seems like such a long time ago. Oh, and to be able to go through one entire day feeling pretty good and able to breathe all day.

I look back to nearly 7 years ago, and I have come a long way.
But I do dream that one day I will be better, I think the thing I find hardest is that all the medications I take and have taken make me so sick. I constantly fight diarrhoea and nausea and sometimes vomiting. I think it would be soooo much easier to cope if I had some degree of wellness, but I guess I would be so much sicker with mg if I wasn't on the meds. My poor neuro is constantly trying to manage my medications, and he's said I am frustrating in this respect, he doesn't mean this in a nasty way, just wishes I would respond "normally"

Redtail,

you are right, the side effects that come as a "package deal" with our effective meds. are really very frustrating for physicians and patients alike.

as to books, they used to be my best friends (never had a dog), but it's been a while since I have been able to read books for pleasure.
it's now quite a task for me to read. although I never gave it up, but can't just crawl in bed with a book, like I used to.

and I assume it is true that it is too dark to read inside a dog (although never really tried it) but possibly you could using a flashlight?

I used to do that when I was a kid and didn't want my parents to "catch" me still reading ( I was a real book worm) in the middle of the night, so I would hide under the covers and use a flashlight to read, and it really worked well.

alice

HI Alice

I don't read as much as I use to, I found myself working out how to lie down in bed on my side, book resting on a pillow, just so I could read, but this to is exhausting!!
I guess I could loan talking books from the library but that is just not the same.
Kate

Hey Annie,

You may remember me as JimInTX. Very good post! I have also been one of the lucky few to have had a drug free remission. It lasted slightly under a year and I was thankful for every day of it. To review: I had a thymectomy with the removal of a thymoma about 11 years ago. Mestinon, imuran and prednisone are my drug cocktail of choice. I’m currently beefing up the imuran in order to decrease the prednisone and all of its side effects. My symptoms are usually bulbar.

Sure, I’d love to have another remission, but I know that it won’t remove the damage already caused by prednisone. My current goal is to get this recent flair-up under control so that I can hit the job market again. I’d be happy with a job, a little imuran, and a beer to wash it all down with.

Jim

Rach, You might have a shot at remission or a better quality of life if you could get a better quality of doctor!

Shar, Keep that dream alive anyway. Who knows, maybe after hormones die off, you will feel better. Or not. ;) You never know what the body can do. If people can use meditation, etc. to keep cancer away maybe we can use our brains to make MG better.

Alice, I can't read anymore either. Too hard to hold a book.

Kate, I'm sorry you are having so many side effects. Why does it have to be a trade-off?! And there is no "normal" with MG. Haven't the neuros figured that out yet? Geez, they see that one bizarre and grotesque photo in one of their medical books, read those few paragraph about MG and think they understand the disease.

Jim, Of course I remember you! Sorry it took so long to get back - I didn't go back and read the post. I'd like a beer too. MG and celiac make that impossible. And a job. A date would be nice too. :ROTFLMAO: Or anything else resembling a normal existence. I'm glad you are doing relatively good though. Glad you're not in the heat of Texas anymore.

The choice between drugs and no or not so many drugs is a very hard one. And can be complicated, as it is in my case. Quality of life is very important but so is actually being alive. I'll never have the life I want and barely the life I need. It's an adjustment no one should have to make.

Thank you for all your responses.

Annie

Life with medication
 

Thanks for the topic Annie and thanks Erin for asking about the rest of us.


I have mixed feelings about taking medication...I would rather live with a problem than take medication in most cases, but with MG I realized that there was no life without it. I take Mestinon 90 to 120 mg per day and it makes my life liveable (if I didn't work, 60 mg per day would be enough). I take vitamins (Vitamin B complex and vitamin E currently) and try to adjust my diet and lifestyle as needed.

I don't think a person can live a truly normal life with MG...although it may be possible to appear normal to others by taking medication (I think that is what doctors and medical websites mean by normal...only the surface appearance of normal) I suppose by this definition I usually live a "normal life" (laughing about this, there is no way my life is normal even if the doctor says so).

I don't even consider remission (although I would be happy to be in remission of course!) and refuse to take any stronger drugs than the minimum necessary for me to function.

I am currently very depressed about my situation and feel like my life is over (I think if I didn't have kids to take care of I would have no desire to live at all right now). I am sure I will learn to live with MG, but right now I have not. I know that feeling sad/angry/depressed is my body and mind telling me that I need to fix this situation, that I can no longer live a "normal life".

And I am fine not having a "normal life" and never being in remission, but I do want to have some good in my life. I am getting tired of using all my energy to work for money and having very little energy left for me or my kids or my family (forget about having a friend!).

I am currently very depressed about my situation and feel like my life is over (I think if I didn't have kids to take care of I would have no desire to live at all right now).

I know exactly how you feel. In fact I would even say that if it weren't for my kids chances are I wouldn't be here right now. At the end of the day, I always realized that I couldn't bring that kind of pain on my kids so I've made myself go on.

Still, I think with treatment (and I have been without a diagnosis or treatment for 8 years) things can improve dramatically for both of us. I'm a firm believer in the little things making life beautiful and worth living. Unfortunately, it's the little things - a walk in the woods (or desert :) ), lunch and a good laugh with a close friend, that are denied to us. Also, like everyone here, I love taking care of my family, I love the sense of accomplishment I get when I DO something - whether it's making cookies for my kids or getting a master's degree, it just feels so good. It's hard to try to find a way to live without all that. Sometimes of course I get to do those things, but too often not.

So, I understand what you're saying. I really do. I also have hope that your life will be better but - I know from years of pushing myself through this exhaustion and weakness trying to get a degree so I can get a job and take care of my family that you reach a point where you just can't do it anymore. And I am the queen of willpower! Sounds like you're pretty tough too. What I'm saying is that if you need to pursue disability, then do it. Don't take no for an answer until you've tried everything. I don't think people understand what agony it is for those who are sick to have to push through every single minute of every day. It's awful. Do what you have to do to stay sane, and take whatever medications can help you (within your comfort zone). Don't give up, people do get better, people do get disability, people do get help.

Ally :hug:

Thank you Ally...thank you for your response :hug:

I am going to see my Dr next week for a checkup and I am going to mention disability again to him, not because I can't work, but because between working and the stress from other issues in my life I feel like I am going to overdo it. I feel like everything is going to fall apart because I just can't keep up with it all (even though again, I can work as the doctor said I would be able to. But he doesn't realize that work is not LIFE) I have a huge amount of stress in my life that I can't make go away. The combination of stress, MG and working is just too much!.

Thinking of disability makes me sad, I don't feel good about having other people help me, I want to be able to take care of myself. I keep trying to think of other ways I can contribute.

I feel so bad about myself right now.:(

But I am trying to make it all better, or at least tolerable...:D I want to do more than just be alive, I want to LIVE! I think I can have a happy life if I remove one of the three energy-stealers from my life...the stress is not going away, MG is not going away...but maybe work can. Need to think on this subject more.

:grouphug:

Hi Desertflower!
 

Hey hon! I think it is a GREAT idea to get some much needed rest and focus on YOU!:hug:

There are lots of ways you can contribute! Just being there for others is HUGE! You have such a big heart and have given much needed HOPE to others - that in and of itself is HUGE!:hug:

There is NOTHING wrong with having someone take care of YOU right now! You would help out someone else, so what is wrong with someone helping you? I struggle with guilt daily due to this stupid disease, but am learning to deal with it! My big idea of "help" is making gift baskets and talking with others about MG. It isn't much, but it helps!:D

Big hugs, honey!
Hope you feel better soon!

Love,
Erin:hug:

being physically dissabled and requiring the help of others, does not mean that you are dissabled, and can't contribute to the society you live in.

and work does not have to be all or none, and also can be modified, in ways that do not seem possible.

I am sure that you will eventually find the way that works best for you.

I have had times in which I truly thought that my life is over, and that there is no way in the world I am going to live like that.

it is not trivial to learn to live with this illness, which is in reality very far from the "pink" descriptions in the text-books.

But, I do think it is possible.

alice

Thanks for all your responses.

I don't even think about remission. I only think about what I am able to do every day and making sure I don't overdo things.

Disability for me is disability. I can't even do my two hours of errands once a week sometimes. Quality of life for me has meant an adjustment of the definition of it. Lately, I don't think I can even say there is more than a drop of it.

Annie

Dear Annie,

I hate to give medical advice to people in "cyberspace", because I think that even when a patient is in your office, you can take a full history, examine them, have all their medical paperes and test results in front of you, you can still go wrong, so obviously when you only have a glimpse, how can you really know?

more then that, neurology, and pulmonology are not in the realm of my expertise, and my knowledge is purely autodidactic, and based on the experience of one patient, that happens to be me, with all the limitations that go with that.

so, I may definitely be wrong, and it is OK if you tell me that what I am saying is complete BS and how can I know, but the way you describe your symptoms, sound to me like you have significant involvement of your respiratory muscles that very likely leads to CO2 retention.

if your O2 sats only are the only thing that is measured this can be easily missed, and it may appear that you are doing pretty well, when you are really not.

the reason I am saying this, is that if I look at what has helped me most, over the last two years, it was my respirator. it was given to me, in order to save my life, because I had reccurent and quite frequent episodes of acute respiratory failure, and could either "move" to the ER, or have some mode of respiratory assistance at home, and I was very fortunate that my pulmonologist thought of this option.

but, at some point I realized that I do not have to be in a life threatening situation in order to use it, and started using it "prophilactically" every time I started feeling "wiped out".

it took a while and a few encouters with some of the more arrogant memebers of my profession to get it properly adjusted . but, now I can really do so much more then before.

Thanks to that, I was gradully able to go back to work, and even go to an international conference to present the results of our research, and even get to do some sight seeing with my husband. when a few months ago, I could hardly even write and submit the abstract to that conference.

hope this is of some help,

alice

Alice: Could you explain some more about CO2 retention? For instance, what are the symptoms? Can it cause significant cognitive impairment? How long does it take to recover? How does someone know they have it?

Actually, would you mind terribly starting a new post on the topic?

Annie: I'm really worried about you. Being homebound STINKS. No wonder you're fighting depression. I do too when I can't get out. Geez, too bad you're so far away, we could be disabled together. ;) Watch stupid movies and make fun of them. Look out the window and watch those beautiful birds of yours. :) Brainstorm horrible names to call that jerk of a neurologist who kept your test results from you. I'll bet we could think of some good ones!

Please take good care of yourself. :hug: Do you ever get remissions where you catch a break? If I remember correctly, you can't take immunosuppresants. Is that right? Do you feel like you're at the end of the road as far as medications go? IVIG? I'm sure you've explored everything (Annie being Annie :Heart:) but I'm just so frustrated for you.

Ally

Actually, my last readings from my chem panel showed my carbon dioxide at the bottom of the test range. I know, that can be bad too!

I'm only on Mestinon because I can't do the other drugs. So I have to manage my MG with rest. I'm not completely homebound but, yes, it is my "sanctuary." ;) Don't worry, writing is my escape. If it weren't for my creative background, I probably would go bonkers.

Alice, I don't think what you are saying is BS. That's silly. I was only saying how it is for me. Oxygen won't help me, it'll make me worse. And I'm worn out by doctoring. My pulmy is awesome and I just saw her a month or so ago. My tests were fine. But like I said before, MG can be "fine" just sitting there in an office and when you take it out for a spin, it likes to turn on you. :cool:

Thanks, Ally. It would be great to sit down with you and lots of people here and giggle ourselves silly. WITH oxygen. Thanks.

Oh, they can test for CO2 with a blood test (not as accurate) or an arterial blood gas (instead of venous blood). A buildup of CO2 will feel like hyperventilation, and also feel like you can't get air. You can get dizzy, be unable to walk, etc. Or you could loosen your bra. Oy. That's why I said you need more testing. You can't tell by those breathing tests you had or by "looking" at someone; like Alice said. My pulmy is thorough. You need one like that. Do not let them test your arterial blood gas while on oxygen. It's sort of like having your glucose tested after eating a hot fudge sundae. Skews the results. They did that to me during my crisis. Idiots. It can make you look like you're having hyperventilation (NOT anxiety, the technical breathing version of hyperventilation) when you really have CO2 buildup.

It's Halloween this next week and I doubt I'll be able to do the regular carving. Oh well. Life hasn't exactly been nice but I have to make the best of it, like everyone else. I wouldn't like the alternative. My farming Norwegian ancestors spawned a tough broad even if I do feel like lutefisk lately.

:hug:
Annie

Annie, this is a WONDERFUL thread. We are all so different -- in our symptoms, our abilities to tolerate treatments, and in our willingness to accept the side-effects from those treatments.

I was a teacher, too -- now on disability. I am only on Mestinon. I cannot take Prednisone due to steroid psychosis -- it makes me suicidal. I wanted a thymectomy -- my neuro tried to get me "strong" by using Plasmapheresis (I "died" -- bp dropped to 44/16) then IVIG (I developed aseptic meningitis). So, no surgery. I am allergic to almost everything -- have reactions to LOTS of meds -- antibiotics are a NIGHTMARE! Lymphoma and skin cancer run in my family, so no Cellcept. I have a double first cousin who had liver failure of unknown origin and had to have a liver transplant, so we are ALL afraid for me to try Imuran. It just goes on and on. At my last appointment, I was not so great, my neuro suggested that we just and see -- I was in total agreement. Neither of us wants to "kill" me again -- LOL!!

So far, I have managed to keep myself OUT of the hospital. I get a LOT of sleep -- drink water or weak tea CONSTANTLY -- try to remain as calm and stress-free as possible (hahahaha) -- stay AWAY from chemicals and PESTICIDES (my dogs now get garlic powder in their food instead of flea and heartworm treatments). I still go into exacerbations when I get sick OR stressed OR if I inadvertently run into a chemical or pesticide (like when the crop dusters fly over), but, otherwise, I am "ok". "Ok" means that I am NOT on a respirator, I am NOT in a wheelchair, and I am NOT in a hospital. (When I am in an exacerbation, I spend 3 months going from my bed to my recliner -- sleeping or napping most of the day.)

Actually, in the SUMMER months, I am "almost" normal. The sunshine does WONDERS for me (Vitamin D, anyone?) I have mostly Bulbar MG -- I NEVER can talk -- but, in the summer, I am even able to do "some" yard work!

Buildings are BAD for me -- my own house is ok -- but, I CONTROL the environment and air quality. At home, my ambulation is pretty good most of the time. About five minutes after I step into a store such as Wal-mart, I start dragging a leg -- and my DV starts in BIG TIME.

I have come to "accept" my life as it is -- and to see the blessings. A lot of MGers that I know ARE taking the BIG drugs and NOT doing any better than I am. Does this mean that they shouldn't take the drugs? That is NOT for me to decide. Does this mean that I SHOULD take the drugs? That is ONLY for me and my doctor to decide.

This is why I LOVE this discussion!! You have given us ALL a chance to say what we are doing AND why -- without pointing fingers or feeling obligations or feeling guilty. We EACH have the right to make our own choices -- to choose our own paths -- to live our own lives. We are all so different -- yet, this "disorder" makes us "kin".

Wow. Thanks, Jana.

So you're pretty much in the boat I am in. Steroids cause too much fluid retention, make me nutty and cause me to have instant infections. Since I'm allergic to lots of antibiotics, immunosuppression is out. Can't do the "fluid" alternatives either (IVIG and plasma) for fluid imbalance reasons, capillary permeability and an arachnoid cyst. Phew. That felt good to get out.

That's so weird that summer is good for you. Are you sure you don't have one of the CMS weirdo genetic disorders like a sodium channel problem that causes not enough acetylcholine? ;) I melt in the heat.

I know, I have friends who can't let go of work. Can't blame them. If I could work, I would. But I'm not willing to do all the drugs in order to attempt it. Choosing drugs is a good choice for some people though.

These are very tough decisions to make. I wish none of us had to make them. It should all be good.

I'm glad you didn't stay dead after plasma. I'm sorry you went through that. I haven't had plasma but have had severe dehydration and almost hypovolemic shock. It's damn scary.

And it sounds like you have to pamper your immune system like I do. Which is a good thing for everyone to do but it's not always that easy. I sleep as much as my body tells me to. Then sometimes I ignore it and drink coffee anyway. ;)

It's such a crap shoot. You don't know how you'll react to the treatments. And some people can't even take Mestinon. And then so many of us have other medical problems or diseases. Not very fair!!!

Anyway, thanks for being so open, Jana. I appreciate it.

Annie

I'm not okay right now but I like your definition of "MG okay." I'm not in a wheelchair or on a respirator or in the hospital either.

Annie, I don't talk about this much with people I know "face to face". I prefer to put on my "big girl panties" and pretend like everything is A-OK. But, in a group with other MGers, I feel like I can "let my hair down" and be "real". It is really nice to be able to talk to other people who "get it".

As far as I know, I have just plain ole MG -- I am AChR positive. I've been tested THREE times (LOL)!!! My first test was with by the general neuro who diagnosed me -- the second was by the top ten teaching hospital he sent me to when I became "fragile" -- and the third was by the specialist that was recommended to me by another MGer. I continue to see the general neuro and the specialist -- I "fired" the top ten docs. I never presented with a droopy eye or DV in the early stages, so each doc wanted to make SURE that I really HAD MG.

No one can figure out WHY the heat doesn't bother me -- I AM an oddity. I am miserable in the cold weather. YES, I have had my thyroid checked over and over -- it is perfectly normal. I do have very low bp -- normal for me is around 90/60 and I am past menopause. I am an oddity -- but, I do know 2 other MGers who crave the heat.

I LOVE my Mestinon -- don't know what I would do without it. I take 6 to 10 60 mg tablets a day.

It is nice to find somebody who is in the "same boat". MG is rare enough -- our particular situation is even rarer.

Hi Jana!
 

Hey there! It is so hard to put on your "big girl panties" and pretend everything is OK when it's not.:(

You HAVE found the right place to vent! Everyone here is so great!:D

I have really low bp as well, in fact mine is about the same as yours - granted there are days when it goes sky high, but that is only since the prednisone.

I miss the heat so much! I live in Texas and find it had to get around when i is above 60 or so. I used to tan all of the time and loved to feel the sun on my face.....I miss it!

When were you dx'ed with MG? What meds are you on?

Erin:hug:

Hi Jana-

For what it's worth I also feel better in the heat and sun and I also have the bulbar form. Strange, isn't it? Needs to be mentioned though that I'm 56 yr old male who has lived his whole live in southern Arizona so I'm quite at home in this environment. Nonetheless, many have mentioned becoming worse in the heat - when heat never bothered them before the disease. I do love the sun and warmth!

Rob D.

Hi Jana! Welcome.

I love your 'big girl panties' comment. So true. It is really wonderful to have a place to come to where you can gripe about things that only other MG'ers can appreciate. I have wonderful support (hubby, friends), but I can sense that even they don't quite grasp the really good day followed by the sorta crummy day!

On my 'sorta crummy days', my hubby tries to blame it on a "bad night of sleep"....if only it were that simple!!!! lolol

Once again, welcome Jana.
Sue

Erin, I was dx'ed in 2005 after a couple of years of not being able to whistle -- YES, that was my only symptom at first. The story of my dx is a fairly long one -- I'll save that for another time.

I am only able to tolerate Mestinon (LOVE IT) -- it is still somewhat helpful in all aspects EXCEPT talking. I can talk enough to "get by" -- I can say about 4 or 5 words before slurring. If I try to continue talking, I become unintelligible after about the 10th word. Can't complain though -- things could be MUCH worse!!

Rob D., I have an MG friend who is CONSTANTLY trying to get me to move to Arizona! I live in Tennessee. We usually have fairly mild winters -- last year was the exception -- I was totally miserable. This summer wasn't so nice, either -- too much rain, not enough sun. We had a drought here a couple of years ago -- it was soooooooo dry -- I had the WORST asthma of my LIFE!! I don't think that I could tolerate the desert air. I've been doing real estate searches in Alabama and Florida -- just in case I ever win the lottery (LOL)!!

Rob D., now you make me wonder if Bulbar and the need for heat ARE connected. hmmmmmmmmm -- I'm always trying to figure things out. I was a math teacher -- puzzles, you know.

Erin, with all of the talk of Vitamin D levels and autoimmunes, I no longer wear any sunscreen. Of course I am careful not to be out during the unsafe hours between 11:00 and 2:00. My neuro checked my D levels at the end of LAST summer (2008) when I had a good tan -- and I was only at "30", the bare minimum for "normal". He said that I was the ONLY one of his patients who had even tested "normal" -- all others were VERY deficient.

I'd love to just take the vitamins -- but, past experience with vitamins has not been good -- I've had reactions to the binders. So, every sunny day you will find me outside -- even in the coldest weather -- for at least 10 or 15 minutes -- exposing my face, hands, and as much of my arms as I can tolerate.

Thanks, SueV!

Hey Jana,

I have bulbar MG too and have never been able to whistle! It was funny, one time when I was feeling very strong after a plasma exchange, I tried to whistle and almost did it! First time in my life...lol

The heat, however, is very bad for me!


Take care!

Nicky, LOL! Even though I "died" after my first and only PEX, the next day, I could whistle for about THREE HOURS!! I was sooooooo excited. But, then it went away. :( I MISS whistling -- a LOT more than I miss talking.

Thanks!

Hey Jana,

My last set of PLEX nearly killed me too...My BP went to 58/40...It was a horrible experience that I hopefully will never endure again...I don't plan on having any more treatments for a very, very long time...Even if it does help me *almost* whistle...lol

Another thing that I can't do is bend my lower lip down...The PLEX helps me do that too, but it only lasts for about a day...I guess the antibodies don't like that maneuver...haha...They're very anti-whistling and anti-lower-lip bending!

What a strange illness we all have:(

P.S. I miss singing the most! :(