Medication free with MG
 

Is there anyone out there battling MG without taking the recomended medication?

I was diagnosed at age 15 and was told i had 10 years to either be dead or paralysed. The drugs they offered had low success rate and were full of bad side effects. It scared me, so i walked out of that hospital and didnt go back for 22 years.

For roughly 3 to 4 months each year had double vision and struggled to talk and swallow. I tried all sorts of alternate healings for 10 years until i saw a real pattern.....they all promised me they'd heal me if i really wanted it! So obviously when their treatment didnt work the answer was always that i was blocking it. I became sceptical of all things spiritual. One year (for the third time) i came close to death either from malnutrition or choking so i went to hospital and accepted the medication and then a thymectomy. Although the drugs pulled me out of my critical state (which i am grateful for) I have struggled more since then than for the 22 years previous.

I found the drugs instantly gave me bad headaches and migraines which lasted solidly for 3 years (including one year since weaning off) My symptoms which had been facial for 22 years were suddenly in my arms aswell. I also now have intense muscle spasms in my therasic spine and neck area since the thymectomy 4 years ago, and i developed a general fatigue making day to day life harder. I no longer work. I weaned off the medication 2 years ago as i felt convinced although they helped with the intense symptoms, that i was better off before taking them. Right or wrong? I dont know...

From what I read, there are plenty of people on the medication who are still struggling so Im just curious to chat about it?

I am a lot better with medication than without it. I take cellcept and mestinon. I am not cured, but at least I am alive and can work, eat, and breathe.

I agree! My neuro told me years ago that my treatment was up to me but my day to day life was up to the meds I chose to take.
Mike

Natsibee, how was the diagnosis made. It is entirely possible that it was incorrect. 10 year... prognosis was clearly wrong. And not what any responsible doctor would state.

By and large MG is manageable, and certainly not lethal.

Your description of how it comes around every year at particular times of the year also suggests something else, not MG, which can worsen with heat, and varies, but generally does not wax and wane as you describe.

I don't yet have a diagnosis, but I can tell you that Mestinon helped a lot. Though after a few months that improvement has lessened. But if I miss a dose, I know about it.

I cant remember all the tests i had in 1989 but i had an RNS test in 2011 prior to my thymectomy. I have known ever since being hospitalised in 2011 that my MG is different to others', and it has always made me wonder if its because ive not been on the medication....perhaps the side effects of the medication are contributing to the symptoms?

Exactly what medications have you tried for your MG and for how long?

Mestinon, prednisolone and pyridostigmine

Ah well, let's just say if I knew beforehand what the medication I started would cause me, I would have never tried it.

It's weird to think before the medication I had significant symptoms but was able to do more and felt less weak than I do now. Now if
I lower the dosage even a little bit it's crisistime, even though I never had a crisis when I had 0 mg a day.
This however, is more likely caused by the natural progressiveness of the disease.

But again, If I knew, I would've never started the medicine. Not talking about mestinon by the way.
First, I was ill. Now, I'm a patient. I don't know if that makes sence, but that's how it feels for me.

By the way, you weaned off both prednisone and mestinon? Because if you do have MG symptoms (though like JJ said, are you sure what you feel now is indeed MG?), why not try mestinon?

i feel for you!!...i feel the same way. I held down full time study and then a full time job for 22 years and played sport. Now im on the couch in pain, tired and weak.
.(...... it is definately MG btw ☺)

And which medicine gave you the bad side effect. Remember of course, that Mestinon will be out of your system 4 hours after taking it. So if any side effects last after you stop taking Mestinon, then it is not responsible.

I take generic mestinon as needed - which works out to every four hours (not while sleeping tho) or so on a regular day. Early on, my neuro offered pred to see if I might achieve remission. I refused - figuring I would only take pred if things got really bad.

so far so good - going into 6th year on just generic mestinon ( I'm lucky )

So when you say you're in your 6th year, what is your day to day life like? What symptoms do you have and to what severity?

Natsibee, you say you're 10 years meds free, so I would ask the same question of you. Although everyone is different, it might be interesting to compare the 2.

I have my ups and down like we all do. But I'm retired which makes a HUGE difference. I don't have to anything and have no particular time schedule to meet.

An average day for me is 7 -9 hours of sleep. A lazy morning - usually with the computer and/or puttering in the garden. Some cooking. And ONE activity from the list below in the afternoon:

-9 holes of golf (with cart and hubby). Rarely I can do 18
- grocery shopping (hits me worse than golf!)
- dust / vacuum (at least a half day affair with many breaks)
- laundry / changing beds
- mowing our small lawn (love this more than any indoor chores!)

Then a quiet evening with book, TV, or computer.

And quite honestly, there are some (summer) days when I do NOTHING. 'Too pooped to pop' as my Mom used to say!!

My symptoms are tired muscles - mostly arms with me. A one sided melting face that makes me look like a stroke victim. Shortness of breath. And a voice the is entirely too loud as I try to compensate and push on!!

This is my 9-10 month a year schedule. I live in the south - so in mid June I hibernate in air conditioning until mid September - more or less. I get really tired, and heavy and am lucky if I can do dusting only one day and vacuum only the next, etc. I do mow the lawn at dusk - but it takes two days (for a tiny lawn!).

Like I said in last post, I'm lucky. Many MG'ers can't do what I am able to do - - and some can do more. My approach is that I'm going to do an activity every day....I just may not be able to the activity I had planned to do that particular day...but I will do something.