Nicky,
That is amazing that she gave you 2 time release to get you by until tomorrow!

I am affraid the Pred may be the root of my recent problems too. I have the shakiness, heart palps, sweating and trembling, plus it is making me sooo irritable and anxious. I feel the same way about one symptom going away and another one starting. It is impossible to know how you will feel from one day to the next. There is a definite greiving process with any disease and it is perfectly normal to want back the life we had before. I struggle with that alot too as well as the "bargaining" I hate to even admit this but when I first got sick I was convinced I had lung cancer and prayed to God that if it wasn't I would quit smoking. Well it wasn't and I feel guilty for not holding up my end of the deal. I have cut way back but am not smoke free yet. I keep thinking there is no way I am going to get better until I make good on the promise I made Him.

You are NOT being depressing, just honest. We are all part of this group so we can support others when they are having a hard time. It is very hard to stay positive when you don't feel good. Try to get some rest and relaxation and hopefully you will start feeling better again soon!!!
Kendra



!!!

Hi Kendra and Nicky,You know, before I got treatment, and then for the first couple years after diagnosis, I felt like, I was just existing, and I couldn't understand why I was still on this earth. I wanted and needed a purpose, and sleeping, or curled up on the sofa day in and day out, just didn't feel like I was doing anything in life.
But here I am 5 1/2 years later, yes, I'm still on prednisone, and haven't had a break from it, not even a day. But I do have a life now, and it has been exactly as those who have had MG for years said it would be.
Getting to the point where I am today was a very subtle strengthening that occurred. It's like, one day, you'll look back and you'll be able to say, hey, I'm not napping as much..etc..
Unless God intervines, I'll probably never be a hundred percent again, and I do believe in miracles, and in prayer. I'm probably around 60 percent on my good days, and I've come to terms with that at the moment. ( I wax and wane on it, but those times are much further apart than what they use to be.)
I feel it's healthy to go through grieving for how things once was. And like when we grieve for a loved one, that too will come and go.
You're not depressing me, as it says to me, you are experiencing normal feelings. All of us have gone through those feelings, and from time to time, we still do.
Vent away, I know I do..
Much Love
Lizzie

Thanks for the kind words, Ladies...You are right...It's okay to mourne...I just felt bad if there are new people reading this and feeling worse because of my feelings lately...But I know that we are all in the same boat, and the symptoms are enough to make us all feel like crap from time-to-time, labels aside...

Kendra, how much prednisone are you taking? I'd definately ask about getting your blood sugar checked...I also get irritable from the prednisone too, and have noticed that my old nemesis, panic attacks (which I haven't had in years) come back every now in then...But they were much worse when I was at 80 mgs, not so bad now...

Another problem I have from the prednisone is insomnia...It's not quite insomnia because once I lay down, I fall right to sleep, but I feel like I can stay up for a very long time...I've been going to bed at like 6am everyday for the last couple of weeks...I think my poor sleep routine is contributing to feeling ill/depressed too...

Hey, Nicky, sweetie, THIS is the place where you get to BE honest -- depression and all. We've all been there -- but, we aren't all there at the SAME TIME. So, TALK it out -- get it out of your system -- don't be afraid to say EXACTLY what you think about this miserable condition and don't apologize for saying it, ok???

Nicky,
I am taking 40mg of Pred every other day. I am also taking Dapsone which is a preventative antibiotic. It is making me feel bad I think too. I take it in the morning and notice by late evening I start feeling better again. Hopefully the Dr. will call in the morning. I mentioned to his nurse I was concerned about my blood sugar so maybe he'll order the blood work. Oh gosh I feel for you with the panic attacks. My oldest son suffers from them and I can literally see the panic on his face when they are coming on. I don't have panic attacks but have noticed my anxiety has gotten much worse. I feel like I am always thinking one step ahead of myself and feel nervous and edgy. I think you are right about your sleeping habits making you feel sick and depressed. Sleep deprivation is horrible. I know if I don't sleep I simply can't cope or function. Those are the days I cry over the smallest things that normally wouldn't bother me at all. I was having a horrible time with my legs twitching at night. It would literally keep me up until the early morning. My Neuro started me on Mirapex which is for RLS and it has worked miracles. I sleep like a baby with it and feel like I am sleeping much more sound. I know there is alot of relaxing meds that can aggravate MG but Mirapex hasn't bothered me at all. You might tell your Neuro that the Pred is giving you insomnia. Maybe there is something he can give you at night to help you fall asleep that is safe with MG.
Kendra

what a great thread.

I have just copied something I wrote a while ago, about this magical, two-sided, frustrating, confusing and indespensible medication for me.

by the way, I found neostigmine injections much better and more predictable when I am doing really bad. (eg-having both breathing and swallowing difficulties that make it hard to breath even with my respirator). it also works really fast (within 5 minutes).

Mestinon:

Mestinon or pyridostigmine is the medication myasthenic patients use in order to increase the amount of acetyl-choline in the synapse, and thus improve the transmission in the neuromuscular junction. This form of treatment was discovered by Marry Walker, who was an ambitious woman physician, who realized that she could use a pesticide that inhibits the enzyme responsible for the destruction of acetyl choline.
At some point I wrote a poem, describing my appreciation and gratitude for her innovative idea.

Marry Walker,

I can vision your foot steps as you so swiftly walk,
Thinking,how to help your patient that can hardly even talk.
How to help your patient that is lying there in bed,
I am sure you feel frustrated and really want to understand,
You think who you could consult; you think who you could ask,
But you realize there is no one to accomplish such a task.

And then, this bright idea comes suddenly into your head,
You stop right where you are and you think you understand.
An injection is then given to the patient in the bed
That nice young lady, that can hardly move her head.
And when you watch the movie, courtesy of "roche"
As the prostigmine goes to were it should approach

You see how within minutes, that patient that looked so sad,
Gets up and moves around, and looks so very glad.
You see how within an hour she gets up to the door,
And then can you believe it, even mops the floor.

I wonder if you thought that some time in the future, not so very far
There will be another woman physician, as ambitious as you are.
That will be able to take care of her patients, and find answers to her questions,
And all thanks to your innovation?


But, very early on, I also realized that for some unexplained reason, mestinon for me was a two-sided sword. None of the neurologists I consulted about it, was able to give me any reasonable explanation for this, in fact they mostly made me feel that I was not taking it properly and something was wrong with me. how could it be that a competent physician, can not find the way to balance her own medication properly?
Taking mestinon when I had clear symptoms, such as diplopia, significant weakness of my arms or legs, swallowing difficulties or shortness of breath, combined with a significant reduction in the level of my activity would almost always help to some degree (sometimes even dramatically to the extent of "popeye and the spinach"), this would also be seen in my respiratory tests such as MIP/MEP. The effect clearly being much more significant then by resting alone.
But if I would try to take mestinon instead of resting, and contine at the same pace, thinking that the mestinon "will take care of it", most of the times it would have the opposite effect and actually make my symptoms worse. But even then if I took another mestinon and went to rest I would experience improvement.
Whenever I tried to stop taking mestinon all together for more then a few days, it lead to an overall worsening of my symptoms. This difference was so obvious to me, as well as those around me, that the head of my department would ask me if I was doing experimental medicine again, and tried stopping my mestinon...


alice

I'm new to this site, but I have been dx with mg for 3 years. My symptoms were so bad by the time I got a diagnosis that I was almost wheelchair bound. Finally after the 3rd neuro I was diagnosed.

I take high doses of mestinon 180mg 3 times a day 2 60mg short acting twice a day, I can't take the prednisone because it makes me psychotic.

Even with all of the mesitnon my symptoms are getting worse by the day,I used to have weakness in just my legs but now I feel through out whole body my mouth gets tired if I chew something for to long, I'm starting to have trouble breathing, my balance is way off.

So I need to go back to the neuro for a check up and see I need a med changed.

Has anybody else experienced the same after being on mestinon for a while?

Thanks Renee

Hi, Renee! Welcome. Another Floridian. How do you guys take that heat?

I've been on Mestinon for almost nine years. It has a bit less impact but still "works" for me.

There's always the possibility that something else could be making MG worse. The obvious culprit usually is the thyroid. There are other possible reasons. Do you have a good primary doctor too? It might be good to check with your neuro and them.

And do you have a pulmonologist? If you are having trouble breathing, you really should be assessed by a pulmy. Neuros don't do that nor do they have the equipment to do it! My pulmy has standing orders for MIP and MEP (neuromuscular specific breathing tests) to be done if I get worse. It's a great arrangement that every MGer should have.

Sometimes the Timespan can "overdose" you, making you weaker. The time release is not "perfect" and you can get too much at the time you are taking the other dose of regular Mestinon. Just a thought.

I hope you can figure out what's going on. What about IVIG? Is your neuro an MG expert? If not, there is one in St. Petersburg.

Annie

Dear Nicky,

I may be wrong in what I am saying but I think that newbies want to know what to expect from their illness and not have a pink picture that is not true, and will make them feel that something is wrong with them when they don't fit. some will have full remission, but some will not. but all can eventually have a reasonably good life. even if quite different then what they thought it would be. your MG is abnormal, my MG is abnormal, so I am asking myself is there really a "normal" MG?

with time you will sort of forget how you were before. not totally, as you will still be you, but you will learn to accpet your physical dissabilities (what ever they will be) and sort of get them woven into your life.

being able to walk or not will become less of an issue. getting there will be your goal, and if you need a wheelchair for that-what the heck.

I am telling you this not only from my own experience, but from that of other patients, with MG and also other diseases.

but, this takes time and unfortunatley there are no short cuts. at least not any that I am aware of. and during that time you need all the support you can get, and also "permission" from yourself to feel really lousy, mourn your previous abilities and gradually find and build your new ones. this is entirely normal and don't let anyone tell you that it's not.

I can only speak for myself, but I am quite sure that everyone has had times of despair when dealing with all this. I definitely did.

and don't settle for only three good months. you deserve a life time of good months, and there is no reason why you should not have that, eventually, remission or not. and I think it is too early to decide that your illness is resistant. you may still have significant improvement.

alice

Renee, you will learn pretty soon that I sound like a "broken record" -- but, with you taking THAT much Mestinon -- are you drinking enough? I just take 60 mg at a time -- every 2 to 4 hours (depending on the day and my symptoms) -- but, it makes me NEED a LOT of fluid. Mestinon makes your kidneys and saliva and other secretions go into OVERDRIVE -- so, if you aren't replacing these fluids, then you may be experiencing some fatigue from dehydration. I would give that a try -- and just see if you can tell any difference.