I was wondering what everyone's thoughts are about my recent experience (my doctor won't be available for questions until Monday and I do intend to ask him on Monday).


After some outdoor work on Tuesday, I experiences sore muscles.

On Wednesday this got worse and I thought I had just overdone it due to not enough exercise. By the end of the day and continueing Thursday(yesterday) my muscles got even more sore. My muscles on my head, neck and chest were especially sore and tight. I had some kind of headache that seemed to be muscle related since it felt good to massage my head.

I didn't understand what might be causing these muscle cramps/pains. I realized that I felt nervous and my heart rate was higher than usual. This is similar to what I felt when I took too much Mestinon, so my assumption is that I am taking too much Mestinon again.

Today I decided to take 1/2 my usual dose of Mestinon. I am feeling better, in fact much better than usual. The sore muscles are still there but getting better as the day goes by. I have less weakness than usual and not getting tired like I usually do.

I have mild MG while taking Mestinon, but my MG was severe before I started Mestinon.

What is going on? Is my MG improving? Can a person suddenly need less Mestinon? I feel hopeful, but at the same time afraid that these muscle cramps are a sign of some new bad thing happening.

Any thoughts?

Thank you everyone.

Susan, That's a good question.

Whenever I've been in doubt, a doctor has run a thyroid panel, chemistry to see if electrolytes are off, CBC, etc. It's always good to rule out other stuff, which is what the urgent care doc did before he sent me off to the hospital right before my MG tanked.

Could you be getting sick?

You don't have any buckthorn plants around, do you? They can cause paralysis in patients with MG.

You could be improving but don't let that fool you! I've experienced times when my MG is "fine" but then others like right now where it flares with the littlest thing I do.

I'm glad you're talking to your doc on Monday. Please mention doing some basic tests to make sure nothing else is going on!

Annie

Desert,

I get the same type of soreness you described, Desert. In the chest, neck, head (with a headache) and back. I have chest muscle weakness and neck weakness from the MG.

The fact that reducing your dosage helped these symptoms seems like there might have been too much mestinon, rendering those muscles weaker which may have caused the muscle strain/pain after the work you were doing.

If that's true (and it's not something else causing the problem), that seems like a promising sign that you can at least reduce your mestinon again. Maybe the MG is slowly, but surely, getting better- that would be kinda really awesome!

When you cut your dosage, did you have any problems with your vision? And how 'bout your vision yesterday, and during the muscle pain episodes- was it blurry at all? If all of your symptoms are pretty well-controlled after reducing your mestinon, I think that's a really hopeful sign, especially if the dosage you were on prior to cutting was effective in the past, without these troublesome sx. Seems like the MG may truly be getting better over time.

Definately check with the doc. to be sure though.
Nicky

DesertFlower, were you wearing gloves when you worked outdoors? What type of work did you do? What did you touch?

I may be wrong in what I am saying, as it is based on my experience with one patient, that happens to be me. so don't take this as scientific.

but, the way I see it. patients with MG have an abnormality in the ability of their muscles to contract, when "ordered" to do so by the responsible nerve.

taking mestinon, makes the signal from the nerve more "clear and strong", but it can't overcome the entire problem, at least in some patients.

so what happens is that it causes you to use the limited ability of your muscle, thinking that you can, when you actually can't ( I hope what I am saying is clear and makes sense).

so, you take the mestinon and feel like popeye who has taken the spinach, or superman, who has his special suit on, when in fact you are still much more weak then you think.

and then using all your limited muscle energy (being fooled by that extra strengh you think you got from the mestinon), you end up crashing big time.

it took me a very long time, and numerous frustrating epidoses, to finally understand that. and even now when I do, I can't resist the temptation to do more then I know I can and should, even when I know the price.

don't know how true this is for you, but hope this helps.


alice.

I think Alice hit it right on the head. Taking less mestinon, I don't think would relieve the pain, but sounds like you strained the muscles and as the days went by the pain lessened.

I know when I take to much mestinon, my vision gets even worse and my tongue twitches and swells. But when I do to much than my muscles hurt more than usual.

Please let us know what your Dr says tomorrow.

Good luck and feel better

Thank you everyone!

Annie, thank you for the test suggestions. I have an appointment to see my doctor on the 28th, and I will be calling him on Monday.

And I do think I may be getting sick. I have a scratchy throat and sinus pressure, but no fever and I feel generally ok. Can being sick make MG symptoms less?

There are Buckthorn family plants here, Condalia and Ziziphus species. I haven't had any close contact with them recently, but there are three at the edge of my garden. I will get more information about these plants.

I don't have any hopes of improving, I only hope for some amount of stability and these new experiences are scary.

I hope you are feeling better Annie.


Nicky, you get this feeling too! I wonder if it has the same cause as mine. With Mestinon my neck and chest are not weak. This chest pressure with sore head and neck are not fun, and mine gets worse every time I take Mestinon.

My vision has been great (normal, lol) since Tuesday when I was working and has not gotten worse since I decreased my Mestinon dose. In fact, I really haven't felt weak at all, just a little tired like I have worked too hard or that I am getting sick. I feel much better than I have since I got MG, except for the chest/neck/head thing which is new.

Usually my vision is the first thing to go if I feel weak.

I don't understand how things can change so suddenly, especially when it seemed like my MG had stabilized and I had sort of figured out how to live with it.

I am currently taking 15 mg (1/4 of a pill) of Mestinon 3 times a day and it feels like too much. In fact, the Mestinon seems to be making me extra talkative and energetic, like drinking way too much coffee. I am relaxing and doing simple things because I don't want to come crashing down with weakness or something worse.

I was taking 30 mg of Mestinon 3 times a day and it was keeping my MG in control as long as I rested some days.

The difference now is that when it is time to take my next dose, I don't feel weak, I can't tell that I need more Mestinon.

I don't know what to think of it.

I did wear gloves most of the time...I touched lots of plants it would be difficult to make a complete list of all the plants I may have touched.

I was trimming plants & adding compost around plants. I did yearly irrigation system checks - which required some kneeling down and getting in the dirt (without my gloves). I did use some iron chelate fertilizer...I will look up info about it to see if there are any health hazards.

There was one fragrant flowering tree nearby that is considered allergenic...African Sumac..but it has not bothered me in the past.

Thank you for making me think about it, I will think about this more and go through my notes.

I have experienced for last twelve weeks exactly these symtoms of head,neck shoulders and chest and sore muscles.
i bought an electric hand massager which you say helps but it returns.
i know now it was the pred pushing my blood pressure up to 140/80sometimes much higher.
i decided to take myself off pred .My blood pressure has returned to normal and all the systems above are gone .
i experimented which i know I should not have with my brothers bp medicine and when it brought my blood pressure down while I was on pred the symtoms also went .
Therefore i know high blood pressure was causing the symtoms.
I had a stressful situation yesterday and for a short period the symtoms returned .
Stress resolved today symtoms gone.
Hope this helps

Alice, thank you for your thoughts.

I agree with what you are saying, because I have experienced this as well.

This week I had an experience different than usual...instead of having that crash as expected, I got sore muscles which turned into feelings of Mestinon overdose. After pushing myself I usually can feel the need for Mestinon even more strongly...but this was the opposite feeling.

Even today I can feel that something is different than usual, I don't seem to be as weak and even my mind seems to be more clear than it has been since I got MG. But I do have this new feeling of having pressure on my chest and a headache and muscle pains in my head/chest/neck which kept getting worse until I decreased my Mestinon dose. Now these pains are minor and I feel generally good, but I definitely still have MG symptoms just not as much.

Maybe I pushed myself too hard and now my MG will get worse. I don't like this feeling of pressure on my chest, hopefully I am sick or having a reaction to something and it will go away. As for the rest of my usual weakness, it is very minor, but I am still taking Mestinon.

I would rather not push myself but for the time being I have to work at least part time.

MG can be complicated, so many factors involved.

I have been doing one new thing these last two weeks that could be causing this, but I really doubt it. I have been trying to get a small amount of sunshine. I decided that the benefits outweigh any risks for me.