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.

NordicGirl, thank you for your kind words. Don't feel sorry for us or our daughter - when she was born, we thought that the world as we knew it had ended. We wanted to grab every couple with a "perfect" new baby and remind them of how lucky they were. Less than 6 months later, we wanted to grab those same couples and tell them how lucky WE were! We don't know what we did "right" to have been given this wonderful child, but we've already told God that he can't have her back.....

Incidentally, she turns 9 years old on Saturday (the picture by my name is one of her when she was 18 months old, taken by her oldest sister) - when I think back to how scared we were right after her birth, I am reminded of how truly blessed we have been. She's a real character, and we have the great good fortune to have a school near us that caters to kids with DS. She is doing better than we ever could have hoped!

The scariest thing with an MG diagnosis is the unknown. We had the same fear when Rebecca was born - we just wanted some reassurance that she was going to be OK. We honestly didn't know if we had it in us to handle what we had been given. As time went on, though, we realized that you just have to take things one day at a time, one obstacle at a time. A couple of years later, we realized that we were doing just fine - life had gone on, and we had adjusted to our new reality.

The same thing will happen for you with the MG - there will be good days and bad days, but that's true whether you have a disease or not; you just accept it for what it is, and learn how to incorporate it into your everyday life. It's going to take time, and you can't speed up time.

Here's a copy of an essay that we received after Rebecca was born, "Welcome to Holland" by Emily Perl Kingsley. It talks about dealing with life after something unexpected happens. Even though it was written primarily for families whose child had been born "different", I think it applies just as well for people who have received an unexpected diagnosis -

http://www.ndsccenter.org/resources/package1.php

Thanks teresakoch You writing so fine and important thinks.

I have some computer problems, so it took little bit longer to answer. I haven't solve those problems yet so I write more after I have solve those.

Hey Nordicgirl,
Sorry to here so much is going on. I have alot of similar problems and it started with back burning years ago, then constipation, then headaches, weakness, walking problems, heat and exercise intolerance, vision problems and short term memory problems. I have had surguries on the spine, lots of tests (celiac, MS, lupus, cadasil, lyme, thyroid, vit Bs, EMGs, MRIs, etc). I was just tested for MG and waiting on results, but all the syptoms don't match. My one neuro thinks I have a metabolic mitochondrial disease. That is very hard to determine because it takes one of the few specialist that have all of background to do it. I will try to keep in touch.
Did you have headaches with your problems??

Just got my results on the MG test and it was negative. They are now referring me for mitochondrial testing elsewhere.

Hi Nordicgirl, First things first, your English is very good, so don't worry about it, or us not understanding you.
You do have a lot of symptoms that sound like MG to me as well. But you have others that don't. However, it's very common to have multiple medical issues going on. Autoimmune diseases seem to like to cluster together.

I would strongly suggest you see a Neurologist who has other MG patients.

Now, for a little bad news. A person can have every MG test come back negative, and still have MG. Have they tried the Tensilon Test on you? It seems like with the weakness you have, it would be a good test to have done.

You've gone through so much already, I hope you get answers soon, and end all this wondering, and frustration of not knowing.
Best of wishes to you
Love Lizzie