Do you know what I'm tired of?
 

I am tired of having a different symptom everyday. One day I will have choking issues, the next diplopia, the next only ptosis (this is usually every day). Then I will have extreme weakness, unable to walk to bathroom, then I'll get short of breath just walking to the bathroom and back.

I'm obviously in the angry stage of grief.


I hate myasthenia

Cassie

Hi, Cassie. How long have you had MG? Is there hope it will settle down after a while and at least be more predictable? What always gets me is that when I get a new symptom, I never know if it's going to be some mild once-in-a-while thing, or the new theme of my life. Curses on a disease that gives you such uncertainty while sapping you of energy you need to deal with it!

I'm going to see a psychologist on Friday. There's got to be some tips for dealing with this kind of chronic illness. It's not easy to get out! I'm taking advantage of an IVIG window to do it.

I also highly recommend journaling! If you write down certain factors every day, and how bad your symptoms were (and which symptoms you have, and when), you may be surprised by what patterns emerge. I thought I was noticing everything, but I wasn't! Here are some of the factors people have suggested noting:

activities; food; sleep; stress; weather (including rain and outside/inside temperatures); hormones (for women who have cycles); chemical exposure; and "other" for anything else you can think of.

Hang in there,

Abby

Thanks, I'm kinda venting, Actually, journaling is how I finally got a diagnosis. I have a calendar and I write down sx just about everyday. I do have 'cycle issues' I tend to have sx during that time. I was diagnosed about three months ago but have had sx for almost three years, but now is the worst, I've ever had.

I really was trying not to be the kind of person who gives advice when someone's obviously just venting... :o Sometimes I can't help myself.

Congratulations on getting a diagnosis! I don't know about you, but I was so relieved to finally be diagnosed, even with a rotten disease. I was terrified that I'd be dismissed as a psychosomatic case if they couldn't figure out what was wrong with me. I was even a little afraid that I was a psychosomatic case.

One thing that I find difficult about the up-and-down nature of MG is that it makes it hard for people to understand. For example, I would like a handicapped certificate for my car, but I'm sure if I get one I'll get dirty looks. On a day I really can't walk, I'm not going to be out shopping. On a day I can, I need to park close so as not to wear myself out--but getting out of the car, I may walk completely normally.

If you feel like talking about it, I would like to hear your story. What were your first symptoms? How did you finally get a diagnosis?

Abby

Cassie,

I hate MG too. It's very abusive and beats up on us every day. ;)

It's really hard to get out of the anger phase of grief over having a chronic illness because MG gets in the way of what we want to do on a daily basis. I honestly believe there's a constant "grieving process" we go through. Most difficult things in life you can work through. I can't do that with MG and it really ticks me off too. It's the one problem I can't solve and it vexes me!

Abby, There's nothing wrong with giving advice, even if someone is venting. Sometimes it helps to gain perspective, like having some Yin with some Yang. There's a place here for all kinds of input, no matter what it is!

Cassie, I'm assuming you've told your neuro how bad off you are? :cool:

Annie

Here is my story: I started having symptoms about three years ago in the summer, I had weakness, fatigue and drooping eye lids and burning in my legs, from knees to hips. I ended up being diagnosed with meuralgia parasthetica. Which is a nerve compression that causes neuropathy in my legs. This was the only diagnosis but didn't really cure my symptoms. But, I did get better. However, I masked symptoms for a long time. I tried to tell my neuro that I was exercising etc. but having weakness etc. For awhile I had symptoms that I thought was heart failure, choking, shortness of breath. I didn't want that diagnosis so I didn't seek treatment, kind of fed up with no answers etc. I would have continued on with this but. . .
In December we went to Disney for 11 days. I had a scooter because I can't walk more than 50 feet without weakness. I would have my 8 year old drive in some of the lines and I would fall asleep. I would also fall into exhaustion and asleep minutes after returning to the room. I had to give up a lot of plans at night. When I returned I was purely exhausted and unable to function. I couldn't work, I ended up in the ER with ptosis. When I went to my neuro he said. . .hmmmmm, I wonder if you have myasthenia gravis. I am a registered nurse and never even considered or thought of that. For a long time I thought I had MS, ALS, Lupus etc, all ruled out. The diagnosis fits all of my symptoms. I am still very bad right now, we went to disney in December of 2010.

My neuro does know how bad I am right now and we are still increasing my Mestinon. He doesn't want to start me on anything else yet. I have an appt with a neuromuscular specialist in the first part of April and I really hope that I will get some better/more complete treatment.

Now, I'm pretty exhausted, long post.

Cassie

Hi,

1. The way you describe it, you need treatment ASAP. you have unstable disease with respiratory symptoms+ sounds like you are still a bit in the denial phase. this can be dangerous. Also, the longer you wait, the less chance that you will fully respond to treatment.

2. I do hope you will go into remission with treatment (and many patients do, at least to some extent), but if not (and that happens too) you just have to learn to live with your changing abilities (and this takes time, but you do learn), and so do people around you (they never fully do, but they will to some extent).
you have to learn to explain it very "matter of factly" knowing that most will not fully understand any how.

3. As this illness (like many other relatively rare diseases) can make you feel quite lonely (even when you are surrounded by friends and family), it is good to talk to other people with MG. It really helps to know that you are not alone, and there are others that feel the same.

I had a major cry fest last night, I mean major. The kind where I can't breathe with it. I feel as if I don't know how to not be in denial. You guys are the only real advice I've received. I'm kind of down because my neuro says yea you have it take Mestinon, but offers no living solutions. At my last appointment they gave me a prescription for a walker and a handicap tag for my car.

I keep telling myself that the appointment in April won't be the cure all but may get me some answers, (I hope).

Sorry you are feeling so down. You are at the right spot though to get support. Many of us if not all of us feel the same as you do. Although I have generalized weakness and hoarseness, I have learned to pretend that I am well. My doctor says I will not have a MG crisis. I do however have trouble breathing if I exert myself too much, but then it calms down. It is like you are in a world all your own. I have found that people are not really concerned with your well being outside of family. And then, family don't fully understand because they can't see the illness. This forum gives the most support that I have found. I have days that I am so tired I feel like staying home from work but I go ahead and go. I have found when I take a few days off I can tell the difference in me, but I have to work. I take my medicine, but what my dr. said is to live a normal life. For some of us, we don't know what normal is anymore. No living solutions there. Listen to your body and take one day at a time. You will be able to make it, it just has to be on your terms and no one elses. I also was checked for the same things you were and thankful my came out MG. I think of it this way. You are the driver of the bus; you have to stop and get gas every so often; then you either can take the scenic route or the freeway with road rage. Sorry if this don't make sense to you. It's just my way of coping. I do hope you get to feeling better. I know you will. Take care of yourself. busy

Hi Cassie!!

Everyone is giving you such great advice -- I'm just gonna add my two cents! :)

When you PUSH MG, it PUSHES back. So, you have to learn to RELAX when it is acting up. Yeah, I know -- easier said than done. Most of us are type A's. :D

MG seems to go in cycles -- sort of like a roller coaster. YOU are in a bad spell right now. This "should" pass. My exacerbations tend to last about three months. Yes, I know that sounds like a LONG time -- but, we don't have ALS or MS or RA -- comparatively speaking, I have convinced myself that I have won the autoimmune "lottery". Attitude is everything when dealing with MG, IMHO.

If I "behave" -- eat right, get plenty of rest, stay calm, stay AWAY from sick people :D, stay hydrated, and take my Mesty regularly, I am "ok". I can no longer work -- BUT, I do have "quality" of life. I am content -- and feel blessed. I go at a slower pace -- listen to my body -- and have figured out ways to do the things I want and need to do -- although some of them take MUCH longer than normal. (So, WHO cares if it takes all week to get the laundry done???)

I have ALSO learned that it is OK to let others do things for me -- and to ask for help. I am NOT nearly as independent as before. Life is different, now -- but, OK!!

I've GOT the handicapped tag -- and I use it! I personally don't care WHO looks at me -- or how. (Abby, are you listening??:hug:) Fortunately, I live in a town where everyone knows about my condition and is very understanding and supportive -- but, even if they were not, I WOULD take CARE of myself!!

Cassie, it is OK to grieve -- I think it is safe to say that we have all done it -- some of us are still in the stages of grief. So, cry, moan, groan...............allow yourself to FEEL the pain -- it is cathartic. In a way, your "old self" has "died". But, a "new you" is alive............and the "new you" will be OK!! Just give yourself a chance!!:hug:

I'm listening, Jana! I think I'm also afraid that if I ask my neuro, he'll say, "Well, I'm not sure you really need that..." That would be such a blow. If he doesn't realize how sick I am, I don't want to find that out right now! And he might not realize it, because he has never seen me at my worst, even though he believes me when I describe my symptoms (when I told him I was getting bad, he got me admitted for IVIG).

I think I'd better talk to the psychologist about this tomorrow. I think that I am still doubting myself, and part of me is wondering if I'm exaggerating my symptoms. This is a disease where you have to take it easy when you're feeling fine, so it messes with my confidence--even though no one is suggesting I'm not for real.

Abby

Oh, Abby!! Bless your heart. I DO understand. I think a lot of us have been "bashed" around a bit by doctors -- and our confidence has taken a beating. I am so blessed to be in a good place right now -- fantastic doctors -- and sometimes I tend to forget........

I think of that picture of you in that little chair/cart "thingy" your hubby designed and made -- like a rickshaw -- and I don't think you are exaggerating AT ALL!!

When I requested my handicapped tag, I told my GP that I often felt FINE going INTO a store, but would feel weak coming OUT of the store -- and that was why I needed the accomodation. He totally understood. (I got the form signed by my GP because he is in the same county as where I get my car tags -- and both of my neuros are in different counties. Probably wouldn't make a difference, but in my mind it just seemed to make more sense. )

You know I am not normally a complainer and I really appreciate all of the support.

Thanks for hanging with me until I dial down the crazy a little bit.

In one of the social security evaluations, the neurologist that examined me asked me if I could get out of my wheelchair and walk a few steps. Of course I can, I said proudly. I can even walk 100 meters on a good day.

In the next evaluation (where they checked my driving abilities) the person who examined me asked why I got such a low score when I have such significant disability. I told her that what I told them, and she said- you miss led the person who examined you. she told me that when someone says they can walk 100 meters they automatically assume that he can easily walk 1000, and not that this is what he/she can do on their best day.

I don't know if what she said is right or not, but probably it is. why is that? maybe there are people that take advantage of the system, or maybe they just assume there are people like that.

Or as my brother said to me a while ago-the people that get the best benefits are those that are fraudulent, because they have all their bases covered, their stories are fully coherent, there is no conflicting data, and they make no mistakes. so, no one doubts what they say. not like you who has this bizarre disease that doesn't make sense.

And like Jana said, I have stopped caring what people think. I walk when I can, to the distance that I can, and use my wheelchair when I can't. and if it confuses the people that see me, it's their problem not mine.

Pinky, yes I have done the major cry. The cry that I have become afraid of because it will degrade my breathing. Once when my mom was hospitalized I had this strange silent cry because there was tears but my chest muslces wouldn't allow any noise. I can be going along and yes running into a rough patch and suddenly something on TV triggers it. I remind myself that there is a good chemical release with tears and be thankful for it.

I just went thru a piece of hating this disease because I cant do the kind of release I used to do easily. Things like cry, yell, sing loud, pound a pillow, heck even just a hard walk. I regret that I didnt know I needed to be thankful for basic things. I sure know that now.

The first year I felt much like you in that I didnt understand why I wasnt being offered information on how to cope, what ot expect. Something! It took me about 18 mo. to learn enough about what this was going to be for me to beable to have self care plan, tools.

I joined a group right away and they helped me have a sense of knowing and a place to turn when new things happened. I am so glad you came here. Welcome.

Annie59:hug: