NordicGirl,
The MG diagnosis was found quite by accident - I thought I was going to be getting some cheap plastic surgery on my eyelids (indications were that I might just have "hooding", caused by age and gravity). Unfortunately, I "failed" the icepack test. In my case, the MG was caught VERY early, so I am quite fortunate. I don't know how it will progress from here; I am hoping it won't get too bad.

I did have some of the other symptoms that are seen in people with MG, but they were so subtle that I attributed them to getting older, my weight, and/or generally being out of shape. I told my husband that now I have a doctor's note to be fat and lazy!

Thanks teresakoch It's very helpful here others experiences.

I have noticed somethink intresting. I took Triptyl (amitriptyl) 10 mg to nights (started january) to help my back getting better and improve my sleep (it hasn't been enough deep). I noticed, I have to take it very early to wake up frech. Because I have had problems, witch I told you, I didn't notice it can be medicin doing symptoms to me and it's lowest dose in that medicin.

It was intuition I stop that medicationand try what happens. After 1,5 week I stopped taking Triptyl, my worst cognitive problems has disappeared. I still have problems with short term visual memory so I can't learn during that witch is most natural to me.

I found this from here , sorry I can't attach link, I'm too new
"Amitriptyline blocks a certain type of receptor for the neurotransmitter (see glossary), acetylcholine, and, consequently, may interfere with the functioning of this neurotransmitter on various organs. The transmitter, acetylcholine, which is normally released from nerve endings, cannot activate receptors that are blocked, resulting in symptoms. "

So, what I'm thinking is, could it be (if I have MG) I had problems even with so small dose? I'm not sure, if I understand right MG mechanism, so if I'm wrong so please explain to me. I have understand MGer have problems with asethylcholine and its receptors specially with those functioning to muscles.

I'm going to have (hopefully very good) neurologist visit in two weeks. I try to have tests to analyse if I have MG. It has been so difficult times, because here is quite warm. Can walk 1,5 km and then I'm finnished Two years ago I enjoyed sunshine and warm...

If you have MG, you want to avoid ANYTHING that blocks acetylcholine from being transmitted. I would find something else to help with your pain - talk to your doctor to see if there is something else that you can take until you have a chance to see your neurologist.

You'll want to stay out of the heat and avoid too much strenuous exercise. If anyone gives you any grief, just ignore them - you know best what works for you, and nobody knows better than you how you are feeling. Give yourself permission to take it easy in order to conserve as much energy as possible.

Thanks teresakoch so much of your patience to answereing me

I wrote wednesday quite long post and it disappeared....grrrr I was too tired to start again.
Now we have a little bit cooler day so I have enough strenght to start again.

Yes, it was interresting to find that amitriptyline have that kind of effect. I dont have pain anymore and I sleep quite well and not too much, because my hypothyroid is in balance with medication. Yesterday I asked farmaseut about this and she find "amitriptyline might be harmful to those patients who are sensitive to anticholinergig function" or something like that with my terrible english

I bought two more gelebags and it has been helpful to use those to cool my self. It helps me to recover faster and if I doing that before bedtime, I can walk and do thinks easier, because nights are starting to be quite warm.
I have to rest every second day if I have done little bit too much for me and if I dont next day I cant do so much and recovery time increase.
So you are right, I must conserve energy more. It is hart ,because I have used to walk everywhere (no car, because here is everything near) and before I loved warm weather. I have to learn.

I never even thought about gelbags - what a great idea! I live in Texas, where the summers are brutal, so I'll be spending the next few months in the A/C with ceiling fans on top speed.....

It does sound like you will have to make modifications to what you are used to normally doing - just listen to your body; you'll get to a point where you will know when you need to slow down. I've told everyone that I now have a doctor's note to be fat and lazy!

It's hard, though, because we don't LOOK like there is anything wrong with us. It's hard for people to understand how very tired we can get in a short amount of time, and they have no frame of reference to know how that low energy feels. However, the people who love us do try to understand - I am sure that they get frustrated at times as well.

I think you can probably tolerate SOME warm weather - just figure out what works for you. Once you have your medication levels adjusted, it will be much easier. And it is early in this diagnosis for you. You are still in shock, and you are going to go through a grieving process, which is perfectly normal. It will take a few months to get over the initial stuff, and then another year or two to completely adjust to your new "reality".

We went through the same thing when our youngest daughter was born with Down syndrome. I think that is why it was easier for me to accept this diagnosis - I knew that everything would be OK with time. Plus, I know someone in our Down syndrome support group who is younger than me (and whose kids younger than mine) who was diagnosed with ALS a couple of years ago. She isn't doing very well now, and she is in the end stages of her disease. I always have to remind myself that things could be a LOT worse....

For someone who has been very active - as it sounds like you are - this is a real adjustment to have to make. You WILL get through it, and you will find ways to still remain active; just in different ways. Allow yourself time to grieve for what you have lost, but hold tight to the knowledge that you will find other things that give you just as much joy!

Hi, NordicGirl.

This question about tricyclic antidepressants, and their anticholingeric actions has come up here before.

A while back I found a question to a neurologist online, who answered it thusly: The drug actions of amitriptyline and its relatives mostly affect smooth muscle and the parasympathetic nervous system. They don't appear to have effects on the neuromuscular junction, that MG involves. Now that was HIS opinion, but in low dose, he may be correct.

http://www.medhelp.org/posts/Neurolo...ms/show/895098

Oh teresakoch, you said so many important words and were so well-turned that i get tears in my eyes
Yes, I tolerate some heat and surely in Texas there is much more heater than in here. Now we have quite hot days, in shadow 29 C so I'm most inside. We are not so used to this kind of heat as you must have been. Tomorrow I have to go out, but I'm going to take very cold shower before and gelebags saves me after
I'm sorry of your daughter has down syndrome, but she must be also a joy to you. I have worked a little while with down syndrome people and they were really nice persons.

mrsD (sorry, if my english is not so good, it's not my mother language)
I asked about that and it was pharmacist who told me that and she check it from Pharmaca, so it is official knowledge here in my counry. There was that "it (Triptyl/amitriptyline) can be harmfully to patients witch are sensitive to anicholinergig function" and also for thos who have parkinson's disease.
As I have said, I dont have MG diagnosis but I suspect it strongly. But those amitriptyline side effects were real, because only think I change were stopping medication and in couple days I mentioned difference and after 1,5 week all cognitive problems had dissapeared (exept short term visual memory specially trying to learn).
And also that neuro said it is possible. But mostly those MG like symptoms still exist and those baffling symptoms has disapeared. But muscle weakness was severe during amitriptyline use.
But it is important you send this link. We all are so different.