Hi Gabriella....thank you for your reply! It is good to hear from others who are in the same boat (so to speak..lol).

I take the generic during the day as well 3 X 60mg. Tonight I will start the timespan at bedtime. I can see that getting the dosage right on the Mestinon is going to be the tricky part.

I have to say that I am a little tense about the reports that I read on people having a MG crisis. In the past I have felt a little short of breath at times (which I told my Dr.), but now if it happens, I start worrying and then anxiety makes it worse. So I am training myself to try to put that out of my mind.

I do live in a small rural town though, so I think I had better alert our local Physicians Assistant and the EMT's to my new diagnosis. At least they would know what was going on without having to start at zero.

And yes, it is nice to know we are not alone!!!
Jen

Jen, Can you find your way to a pulmonologist? An MGer should really have both a neurologist and a pulmonologist. What they can do is assess your breathing right now and give you an idea of when you might need to come in, if it gets bad. Though with MG, you don't want to wait until it gets "bad" to go in! You want to get checked out when you are getting worse.

An MG crisis can happen suddenly. I'm not saying that to scare you but to prepare you for "what ifs." Knowing what to expect, how to react, etc. will really help. Having your "team" (neurology/pulmonology/hospital) in place really helps. You can get a peak flow meter (probably free from your doctor) and/or an oximeter to monitor how much oxygen you are getting. You can make sure you don't overdo it and get worse. You can have standing breathing test orders in place with the pulmonologist for when you do get worse. They can also do arterial blood gases to see how badly you are doing at breathing air in and out. You can make sure you never get too hot or too cold, which makes both MG and MS worse but particularly MG.

If you are an MGer that has trouble speaking, having a message on tape for a 911 call - in case you are alone during an MG crisis - is a good idea. "Hi, I'm having a myasthenic crisis right now and can't speak. This is a recorded message. I need an ambulance right away." Of course, some dispatchers might think that's a joke but you can actually call your local dispatch and let them know that you have MG and might not be able to talk in an emergency!

There are a lot of ways to set yourself up so that you don't have an MG crisis. Sometimes MG is really bad for certain people and they are more prone to it. Being aware of triggers like infections, stress, lack of sleep, heat, etc. will really help in avoiding one.

So . . . relax! I've had a crisis (2005) and they are not fun but I haven't had one since! No way would I want another one, so I take it easy.

I'm glad you MG/MSers can connect. I don't have MS but my lower leg neuropathy sucks. Having pain and weakness is not fair!

Annie

The Nonin oximeters are great (i.e., Nonin Go2 is $99) but there are other less expensive ones. It's really nice to have one!

Jen,

I don't have an official dx of MG or MS, but they are both on the table right now, and it is looking like i may have both. (brain lesion and oligoclonal bands point to MS. ACHR antibodies and striational muscle antibodies point to MG. Extreme paraparesis points to either one or both!) So I can relate, even though I'm just getting started with all of this.

I can sympathize with your fears about respiratory crisis. I had a respiratory crisis that sent me to the ICU about two months ago. Afterwards I was really worried when my breath felt short and I talked to my pulmonologist about it. He had the same advice as Annie just gave; and it really helped me. Have your incentive spirometer close by and know what range is normal for you. An inspirometer measures your lung capacity. That way if your lung volume severely decreases from your normal range, you will be the first to know about it. You can buy one really cheaply on amazon, or your pulmonologist can probably give you one. (search "incentive spirometer" on amazon or google to see several options. Some as cheap as $7)

Using the spirometer regularly also exercises your lungs and makes them stonger to reduce your risk of respiratory crisis. If you have decreased activity levels, this is actually a really important thing to do.

Another thing, as Annie mentioned, is to have a pulse oximeter. I got one for $35 and it's great. You can even find them for $20 (search "pulse oximeter" on amazon or google) Knowing your oxygen saturation levels will tell you how well your lungs are doing and how much oxygen your body is getting. This will be a way for you to feel reassured when things are fine and to be warned when they are not.

When I feel short of breath, or I am worrying about my lungs because they hurt, feel tight, etc, I pull out my spirometer to check my lung volume, and then pull out my oximeter to check my oxygenation. If both are fine, then I can genuinely because I am not just trying to "not stress" about it (which i was doing before). I actually know that I am fine. It really helps. You would obviously still want to make an appointment with your pulmonologist if something feels off, but you will know you are not in crisis if your volume is good and your oxygenation is good.

Best of luck to you, and hope to see you around on the forums (both MG and MS!)

Mandy

Great advice, thanks a bunch Annie & Mandy. I think I'm still in bit of shock after this diagnosis. Today I went for a short hike with my honey, and as we went tromped up a pretty steep hill, I thouht to myself. "man alive, I need to lose weight!....and...."will this trigger a breathing issue?" It didn't, thank God, but I'm hoping it isn't going to be on my mind every minute of every day.

I'm going to search the threads and possibly start a new one about what excersize is appropriate after a diagnosis like this.

Jen

It will get easier as you go along. Being able to test your own lung function will empower you and before long you won't worry about it as much. For me i felt horrible back and chest pain and i could barely talk above a whisper and i had to take breaths in the middle of sentences. I am not sure how it usually happens, but for me it was pretty noticeable. If you feel it is really on your mind every minute, put a spirometer and oximeter in a purse or backpack. Then if you ever get stressed about your breathing, you can test it. The more you test it and realize what feels normal for you, the less you will worry about it each day.

I'm sorry to hear about the diagnosis of MS and MG, I'm sure it's a shock. None of us ever expected to be thrown into this medical world so unkindly, and for many of us, so suddenly. I like your idea about getting healthier by working out. I would talk to your docs (and therapists) to see what they recommend for you. Getting healthier will definitely improve how your body handles everything. I haven't really gotten deep into researching it yet, but supposedly there are alot of diets that really help MS symptoms.

Best of luck with everything. Keep us updated on how you are doing.

Mandy