[Stellatum]

At this point, I really don't know if I'm getting too much, or too little, or if it's making no difference at all.

The first time I tried taking it every three hours, I got weak and collapsed, so I assumed it was too much. Later I started thinking that may have been a coincidence, so I've been taking it every three hours (4X/day) for the past three days, and I'm fine--no collapsing. No significant improvement, either.

I am journaling my symptoms. I definitely feel them at about three hours or so after the last dose. On the other hand, I feel them in between doses, as well.

I would think the Mestinon is doing nothing, only thinking back to before I started taking it at all, I have to think I'm improved. There was a time when I rarely could cook dinner, since late afternoons were so bad--now I cook most days. And I've had no double vision since I started the Mestinon--on the other hand, I only had double vision for one day before (that's what scared me into moving up my neuro appointment, and I got the prescription).

I'll keep journaling my symptoms. My hopes were probably just too high--I was hoping I could "Live a Normal Life" (oh, I am starting to hate that phrase) on the Mestinon. But my weak neck, tiltiness, and periods of exhaustion are still really holding me back.

Your comments and experiences are welcome! Does anyone else notice that rainy days are the worst?

Thanks, everyone,

Abby

[Joanmarie63]

Abby,

weather effects my MG greatly. As for your medication issues, I would call the Dr. and explain what is going on. I know I can only take mestinon and nothing else, and some times when I take it I too wonder if it is working or not, or did I take to much, to little?

MG is just so messed up at times, so again, I say call and talk to your Dr or Nurse.

I hope you start feeling better soon.

[Stellatum]

Thanks. I will definitely hash this out with my doctor.

I had such a good day today! The sunshine after a week of rain may have had something to do with it. I even took a walk around the block with my little boys to see if we could find anything growing (yup--some crocuses).

Abby

[DesertFlower]

I think I reached a point similar to where you are.

I know the Mestinon is helping me, and I am very very thankful for it because at least I can live. I absolutely know that it is helping me.

On the other hand, I have not been able to live "normally" as my doctor insists that I can with Mestinon.

I kept track of my symptoms and my Mestinon dosage and finally came up with a best dosage. Any more or less and my symptoms increase.

But Mestinon only keeps my symptoms gone if I pretty much do nothing. I start to feel normal and then I do something besides basic living (basic means things like cooking, eating, brushing my teeth, showering, etc) and I collapse with weakness or I get double vision or something else that puts a stop to everything. I can't work full time or even play normally.

I am tired of my doctor saying I can live a normal life... ridiculous! Is there anyone in this forum that lives a normal life with MG? Is there anyone with MG that lives a normal life?

I have almost accepted having MG and find that I can live with it as long as I have Mestinon, but I haven't figured out the financial part yet. How do you survive if you can't work more than about 12 hours a week consistantly?

I feel bad that you can't go back to your normal self, and I suspect that you won't be able to unless you are one of the rare ones who go into remission. Hopefully you will, I hope this for every one of us, but there is no counting on it.

Sorry for the long post. I am feeling sad at the moment. I really really really hate MG....and I really don't like this expectation of being "normal", that is why I responded because I am getting tired of hearing it, too. My family expects a miracle and thinks I should try other medicine or even go to another doctor with the hope of some miracle drug or cure. My doctor expects that I will live a normal life and won't even listen to my complaints, he just says to give it time. How much longer do I have to wait? My MG has pretty much stabilized at this point and I am far from "normal".

Why won't everyone just accept that I have MG and need to live a little differently, slower than before. I am fine with that. I don't want to keep having doctors do tests on me or experiment with me - Mestinon helps enough and that is good enough for me, I don't want anything more, just please keep prescribing the Mestinon that's all I ask. I wish I had just one person to give me some emotional support on this.

Thank you everyone here, you are very supportive...but I am really needing a physical person who is in my real life to give me some emotional support and I am not getting it at all.

Rainy days are the worst for me. When the storms come, I lose all energy and pretty much sit on the couch or in front of the computer all day. My legs feel like jello when it rains and I have a hard time thinking clearly. Luckily the weather here is usually sunny.

You are not alone in your feelings about MG. I hope my comments above are not taken in a bad way, I am meaning to share how I feel, because I know it makes me feel better to know that I am not alone with MG. I do feel bad right now, so I may have gotten a little carried away with my complaints.

I hope you are feeling better and that the Mestinon is helping.

[neutro]

I think the problem with Mestinon is the fluctuant nature of the illness. First, no two MG are the same, second, it varies along the day according to outside parameters like temperature and physical activites.
This means that besides a regular intake of Mestinon (every so hours), you may to adjust the dosage to follow your condition. For example, if you feel weak, why not take ONE extra pill? If you feel better afterwards, resume your regular schedule after the extra pill. If not, wait until your condition goes back to "normal" then resume your regular schedule.
Patients who have been taking Mestinon for some time have learned to listen to their body and adjust the intake accordingly.
I take 60 mg normally at 8:30, 9:30,11:30,2:00,5:00 and 8:00 because most of my difficulties are concentrated in the mornings: breakfast, shower, dressing whereas I usually take a little nap in the afternoons...
One more thing, in my opinion, very few patients live a "normal" life only with Mestinon...
Maurice.

[jana]

I'm so glad you all are talking about the weather........the rainy days KILL me!!! This winter has been HORRIBLE!!! Overcast days are bad, too. But, give me a sunny day and I am "good to go"!!!

Honestly, I feel like I hibernate for 9 months in order to LIVE during the Summer. Spring is LATE here in Tennessee this year -- we should already be having warm weather -- my body NEEDS the warmth and the sunshine. I also hate to complain -- but, some days I'm not sure how much longer I'm going to be able to hold out. Not suicidal or anything -- but, sad.

And, DF -- "normal"?? I don't know any MGers who are living normal lives -- even those on high-powered meds. But, maybe the normal ones don't belong to groups?????

[DesertFlower]

Maurice,
I like the idea of taking extra Mestinon when I feel weak. My neuro insists that Mestinon be taken on a regular schedule. He said that if I need more one day, then I should continue the new increased amount on future days. He absolutely didn't want me taking it as needed, but did give me an okay to adjust dosage as long as I stop adjusting when I figure out what works best for me. His opinion is that for the best long term benefits, Mestinon should be taken on a regular basis without daily adjustments as needed. I have talked to my Neuro about extra Mestinon only when needed a few times and he won't consider it.
I agree that MG symptoms are variable depending on what I do and where I am. I am open to anything that will make me even slightly better, including occasional extra Mestinon, but for now I am following my doctors advise and staying with a steady Mestinon dosage (I am "giving it time" like he asked me to).

Abby,
I have found lots of other things besides Mestinon that help my MG symptoms. None of them help a lot, but just the small boost I get is great. Some of the things I have found to help are vitamins (B Complex, E, C, Magnesium in small amounts), green leafy vegetables, nuts, sunshine, small amounts of exercise.

To go along with the rainy days, other things that make my MG worse include exposure to chemicals/perfumes/insecticides, eating packaged food (anything with more than a few ingredients seem to make my MG worse-is it the preservatives?), being near lots of electrical devices(mostly I notice this at our local library near the section with all the computers), fluorescent lights...

I noticed that coffee and tea can effect me either way - sometimes it makes my symptoms better and sometimes makes them worse. I looked up information and caffeine can inhibit your absorption of iron,magnesium and other minerals. Also the caffeine acts in a similar way as Mestinon, so it can make me have Mestinon overdose symptoms if I drink it on my resting days. I have stopped drinking caffeine recently to see if I notice any big changes.

I am still tracking my symptoms and continue to notice things that are good or bad for my MG. I am slowly making changes to my life and want to make more. This forum is a great place to share ideas.

One funny thing...I have been putting green leafy things into a lot of the foods I cook. At first my kids thought I was crazy, but now they like it. They say it makes them more energetic and that they feel smarter. It is fun to take my kids to the store and have them ask for Rainbow Chard or Beet Greens...how many kids do that?

Spring is here! The Gold Poppies are blooming at their best now and all the spring wildflowers are out. I must save enough energy to go for a walk out in the desert! I am feeling desperately in need of seeing the flowers up close and out in the wild. Beautiful!!!

[Stellatum]

Hi, DesertFlower. I'm glad you're planning on a walk! I felt so much better the first sunny day after a week of rain that I decided the sun must be good for me. Can't hurt, anyway! So we are homeschooling on the porch today. I'm having my second good day in a row.

My neuro said that the Mestinon won't make me better except for four hours at a time, but I've heard enough of the other side to suspend judgment on that one. I've decided to take it at 8, 11, 2, and 5 until I see him next, in a few weeks, and track my symptoms.

Thanks for the help, everyone, and I wish you all a good spring day in the sunshine.

Abby

[AnnieB3]

Abby, I know it can be frustrating trying to figure out what is a good dose amount for you. I am confused, though, about the dosing frequency and why that would make you worse. What is the dose amount (mg) that you are on?

Mestinon basically gives you two good hours of use. Many docs, when someone starts taking Mestinon, do not want someone taking it more than four hours apart. I take mine every three hours, round the clock.

I think that until you get a handle on the frequency of dose, you shouldn't mess with the amount - just my opinion. My neuro gave me a certain amount I could go over my regular dose when I go out, because MG is a supply/demand thing. The more you do, the more you use up. It's not a "static" disease state, like say a broken bone is! And at least that would eventually heal.

About a week ago, I talked too much and was too stressed out. Now, with the slightest bit of talking, or even not talking by the afternoon, my neck/tongue/jaw are so weak that they are cramping and on the verge of a spasm. It's often what muscle groups you "dare" to use (sorry, being sarcastic) that get weaker.

But if I take too much Mestinon, I can "overdose" on other muscles. Mestinon can be a real stupid balance.

I hope you can get a 2nd opinion to see for sure what is going on. For me, I had no problems with Mestinon when I started it (nine years ago). It's worked every single time and I'm always weaker off of it.

Susan, I am just so sorry you are having a hard time. I don't know if it's family members not wanting someone to change or being in denial or what that makes them absolute doh-doh brains sometimes. I find it's the people who know me the best and see me the most that "get it."

A steady Mestinon dose is good "in general" but if the body is needing more when you do something, it needs MORE. I think some doctors are afraid of their patients overdosing and then blaming their doctor. They should be more concerned about their patients getting worse and not breathing!!! My neuro respects me and my intelligence and knows that I won't do something stupid with dosing. He trusts me to take that extra dose when necessary. Some docs give a dose "window" for a patient, like 80 - 100 mg.

Doctors also have to think about things like, Is my patient depressed? Would they overdose on purpose? How much would the insurance cover? Would it cover a flexible dose (which you can get around by a higher dose on the prescription and personal instructions to the patient!). And they are thinking about lawsuits, all the time.

Susan, I wish I could build a house for all MGers who don't have money. Then we could hire a personal doctor and nurse for us! Why is it that getting sick has to drain not only our energy but our pockets? It completely sucks. I think that you should try a second opinion. Have you thought about going to Mayo or a University where there might be someone more knowledgeable? If only for a fresh set of eyes.

I don't think others can really know how tough life is with MG. We do as little as possible because when we do things, MG flares big time. So people see us doing "okay" because we aren't being active. Sometimes I wonder if people are really that dense. How many times do you have to explain something? When we run out of muscle gas, we don't have a muscle gas station to go to, damn it!

I'm just sorry you guys are having a tough time. At least my fingers can still talk right now. Try not talking for a few days - it stinks.


Annie

[DesertFlower]

Annie,
I think you are right about the reasons why a doctor would hesitate to give us a flexible dose of Mestinon.

And yes I am considering a second opinion right now, although I am starting to accept MG and don't need/want any further treatments beyond Mestinon. I would like to find a doctor who at least tries to understand what I am going through, and really tries to help.

My current neuro seems to have gotten to the point where he feels like I am "fixed" and so he doesnt need to listen to any new or continued symptoms I am having. And I feel like I should be reporting my symptoms, until I can work full time again, because my doctor said that since I have "mild" MG I should be able to live "normally" and work full time with no problems. It is not happening and I am finally not expecting it to.

I wouldn't be telling him of my continued symptoms if he hadn't told me that my MG is too mild for disability. I think I need to keep telling him so it is on the record (hopefully).

I hope you can talk soon.