I had an "attack" tonight...input please?
 

Attack probably isn't the right word, but I had one of my spells this evening. I have been pushing myself lately, but otherwise I've been doing ok. I was out with my friend when it happened. We went to Lowe's to look for plants, then to Sonic to eat. On the way to Sonic I got really sick. I had been talking and chewing gum (and walking) when we were at Lowe's. My mouth started hurting so bad! I got short of breath and just had no energy. These spells have happened to me before. I had to sit quietly for a few minutes and I started to feel a bit better.

I've had these espisodes where it would take a nights sleep before I would feel normal again. My breathing scares me sometimes. I can't even describe it. It's as if I don't have enough air to talk and breath at the same time. I wish I knew what was going on with me. Sometimes my legs will hurt from walking too much, then my arms will hurt too even though I haven't done anything out of the ordinary with them.

Thanks for any help.

Shalynn, I'm sorry they are happening. What it sounds like to me is that, if you do indeed have MG, it is getting worse. A few months before my MG crisis, I would have a sudden shortness of breath episode while out. If I rested, it would get better and then I would back off on activity. But three months after they started, due to doing too much and the heat outside, I went into a crisis.

A crisis can happen suddenly like that. The best thing you can do is to call your neuro and/or go to the ER to be checked out.

One thing you should know about B12 is that we need B12 for acetylcholine (B12 contributes to choline, which contributes to acetylcholine). I think you have more than one thing going on here.

You really need to get on the phone and call your neuro's office right away. If you cannot take a breath in or well, it's really an emergency. You cannot tell how quickly MG will get worse or how bad it's going to get. Having an "official" diagnosis is not necessary if you are feeling bad. You need to go in and let the experts evaluate you.

I hope you don't get worse. At some point, you may want a pulmonologist to evaluate your breathing thoroughly.

Take care,
Annie

Friday night - end of long week that you pushed yourself to get through....

Sounds like at the very least a 3 day weekend will do you good, IF you spend it resting and pampering yourself!!

Deal with docs next week - - unless breathing gets bad...in which case a trip to ER should certainly be a foremost thought.

Take extra good care of you - - - and let us know how you are doing when you can.
Sue

Thank you both for your suggestions. I am feeling pretty weak this morning. The breathing is some better though. Whatever I have, I am headed into a flare up of symptoms. :(

I need to find a local neurologist who will work with me. My neuro is three hours away!

Annie, that is interesting about B12 being needed for acetylcholine. I'm just not sure if my B12 (400) is low enough to cause any trouble.

I guess I always think I need a diagnosis to be taken seriously. I know something isn't right, that's for sure.

Sue, I'm going to try and take it a bit easy today. My youngest daughter, who is 17, is a great help. She's already offered to help me clean. She's up at our church helping set up for VBS. I sure wish I had her energy.

Thanks again.

Sorry you are feeling bad.

I wanted to tell you that I have given up chewing gum...every time I chew gum I have lost the ability to speak properly and start slurring/sounding nasal...also the gum makes so that I can't chew food later on, for a few days sometimes. My mouth seems to be one of the sensitive places for overuse. Even when I am feeling good as far as MG goes, still gum is a bad thing for me.

So please stay away from gum while you are resting. I hope you feel better soon. Take care of yourself.

I have given up gum as well. :)

Sorry that this happened to you. Yet Ill put my input in it.

This happened to me alot the past year, and then i was put on zoloft to calm myself down. I was having panic attacks, because of my side affects on a medicine, and then it would scare me into a panic attack where i couldnt breathe, got very weak and hurt in various places.

Though most crisis's come on semi slowely, it also could be that. Yet the fact that you got better quickly is a good sign.

Hope you feel better!

Thank you for the kind words and for the tip on the gum....I guess I should have thought of that. The constant chewing can't be good. I don't chew gum very often, once every couple of weeks, but I now that I know it can be a problem, I'll stop. I have trouble with anything doughy too...pizza is the worst!

Tyson, Thanks for the input. I don't think I was having a panic attack...I used to suffer from them every so often and my symptoms just were not like a panic attack. I have been on Lexapro for the past year due to depression and it also has a calming effect. It's almost as if I don't have enough air to do what I need to do. It's so hard to explain. It's like I can talk and maybe be ok, but if I try to talk and eat it will be too much. If I've had a busy day and try and talk and eat, then it's even worse.

The doctors have also been considering mitochondrial disease in my case too. They've also said it's quite possible I have more than one disorder. For now, I need to learn to pace myself. I push myself, then crash and burn. Not a good thing.

I'm still feeling poorly with burning and weakness in my arms, legs, and jaw. I'm hoping to be able to spend some time with my family at a relatives home today.

Happy 4th to all of my fellow Americans. :)

Thanks again for your advice and support

Be VERY careful on Lexapro - there have been some really nasty side effects (non-MG) associated with it. My sister was on it for several years, and she gained a LOT of weight. There have also been well-documented cases of Type II Diabetes associated with it as well.

However, I would talk to your neurologist to see if Lexapro can make the symptoms of MG worse - if there is the slightest chance that you may have MG, you probably will want to find a different medication to take. I would caution you against the class of medications that are given for Bipolar Disease, however. I am starting to suspect that my sister may have had undiagnosed MG - she had TERRIBLE problems when she started taking BPD medications in 2008, to the point that she literally could not walk more than a few steps without becoming severely out of breath. She also gained even more weight on those medications. Her inability to move caused her to develop blood clots, and she passed away due to a pulmonary embolism in December of 2008.

Her problems with breathlessness, heavy-feeling limbs, and other health issues got significantly worse when she started taking the Bipolar medications (she tried several, and they ALL caused those symptoms - they would go away when she stopped taking them, but her BPD symptoms would flare up again). Since she was so overweight, all of the doctors who saw her attributed her symptoms to her weight. Of course, MG is such a rare condition, there isn't any reason that a doctor would think to look at it as a cause for most people.

Have you talked to your doctor about a trial of Mestinon? If you have MG, it will help; if you don't, you will feel really BAD on the medication. About the ONLY people who can tolerate Mestinon are people who have MG.....