[Stellatum]

I experience my symptoms in a way that I haven't seen described here, and I'm wondering if I'm the only one.

I have various symptoms through the day, worsening as the day wears on--weakness in my arms, legs, and neck, etc. But sometimes, usually in the evening, I have some sort of attack that lasts about half an hour. I get really weak, weak enough to collapse, all at once. Lately I'm also a bit short of breath when this happens. I lie down, and in half an hour or so I feel better.

I used to take Mestinon when this happened, and in half an hour I'd feel better so I thought the Mestinon was making me stronger. But now I'm not taking it at all, and I get stronger in half an hour anyway.

When I have these attacks, I can feel them coming on--they're not gradual. It's pretty extreme--I have to lie down or I'll end up on the floor. Does anyone else experience something similar?

Thanks.

Abby

[suev]

Yikes Abby - that sounds awful! No I've never experienced anything like that.

Is there a chance that there is a relationship to evening meal?....like does it always happen within a certain window after evening meal? Could it be some kind of 'metabolic dip' or change in systemic blood pressure after eating?

All just wild guesses - but it just sounds too predictable to be MG alone.

[alice md]

Originally Posted by Stellatum

I experience my symptoms in a way that I haven't seen described here, and I'm wondering if I'm the only one.

I have various symptoms through the day, worsening as the day wears on--weakness in my arms, legs, and neck, etc. But sometimes, usually in the evening, I have some sort of attack that lasts about half an hour. I get really weak, weak enough to collapse, all at once. Lately I'm also a bit short of breath when this happens. I lie down, and in half an hour or so I feel better.

I used to take Mestinon when this happened, and in half an hour I'd feel better so I thought the Mestinon was making me stronger. But now I'm not taking it at all, and I get stronger in half an hour anyway.

When I have these attacks, I can feel them coming on--they're not gradual. It's pretty extreme--I have to lie down or I'll end up on the floor. Does anyone else experience something similar?

Thanks.

Abby

yes, I have them and I have no doubt that they are MG related. I have no other medical problem and never had. mine last much longer (although they can be short as yours) are now accompanied many times by respiratory failure and would respond to neostigmine. It was much worse on steroids and improved significantly with ventolin. they can occur any time during the day.
they confused almost every neurologist that I have met.

[sugrkiss]

I have experienced the same thing. Only a few times, but it was incredibly scary. I thought for sure I was going into crisis....I never figured out what they were or what caused them. I hope you feel better soon. Take steps to protect yourself, ie...carry a phone everywhere in case you need an ambulance.

Jess

[Stellatum]

Thanks, everyone. I wondered for a while if it was a blood sugar thing, but since I tuned into that, I find it happens regardless of whether I've eaten recently or not. Sometimes it hits me in the late afternoon, before dinner, and sometimes in the early evening, after dinner. If it weren't for these attacks, my MG would be easier to live with, since my other symptoms are mild, compared to many people here at least.

I have been assuming it's some sort of surge of antibodies. When I was suffering from Graves (took a while to diagnose that one, too) it was the same thing--it came in surges.

I hadn't had one for a while, but I got one last night. I am experienced enough now to feel it coming on, which is a very useful thing! I can lie down and avoid the collapse.

The first time I noticed my MG symptoms was one of these attacks. I collapsed onto the floor, without understanding what had happened. My doctor was sure at first it was some inner ear thing, but there's no dizziness, vertigo or light-headedness involved: my legs simply can't hold me up anymore, that's all. It took a few months for me to understand that and explain it to my doctor.

My neuro said I undoubtedly had MG for months before this first attack (which makes sense--the onset would correspond with my Graves disease relapse), with symptoms too mild to notice.

Abby

[DesertFlower]

I have similar experiences, where my body goes limp suddenly, usually I have 30 seconds to a minute to get to a couch or bed and if I don't make it I end up on the floor. I think it has something to do with an antibody surge like you said because I also feel tingly under my skin during these times, a spreading senstion that moves outward ending in my hands and feet.

If I am feeling generally okay, I am like you and recover in about 30 minutes. If I am experiencing lots of MG symptoms previously, I require a long nap to recover, about 2 to 3 hours.

Almost always this happens after some triggering event. Usually it is stress (99% of the time), but occasionally it is something I eat or smell. It is almost like an allergic reaction and I am allergic to stress. Sometimes a phone ringing triggers this collapse, because the phone startles me.

I've also experienced this by smelling and/or eating cinnamon, which I am extremely allergic to, but in these cases the reaction is a little slower, it takes 5 or 10 minutes before complete collapse.

It is not a fun thing, I've spent way too much time laying on the floor waiting for the weakness to pass.

[Annie59]

Yes I have what you explained and have these features DesertFlower spoke of. The tingling is regualr for me when I extend myself for visits, come home and sit and it comes on at times very hard. I used to tell the docs that I would get spaghetti legs when I was still trying to walk the 1 mile track at my fav park. That was for me feeling that if I didnt sit down I was gonna colapse.

Resting, being able to go to bed and have my total body support can give me this literal 'aahhhh' in my body at these times. It needs to not hold up any part of me or work as little as possible and REST!

Is anyone familiar with the study on mice with mestinon that showed that mestinon caused them to startle when without they would not. When I was first on mestinon it seemed to be very mildy like that for me tho now it is just the opposite. It puts me to sleep!

Annie59

Originally Posted by DesertFlower

I have similar experiences, where my body goes limp suddenly, usually I have 30 seconds to a minute to get to a couch or bed and if I don't make it I end up on the floor. I think it has something to do with an antibody surge like you said because I also feel tingly under my skin during these times, a spreading senstion that moves outward ending in my hands and feet.

If I am feeling generally okay, I am like you and recover in about 30 minutes. If I am experiencing lots of MG symptoms previously, I require a long nap to recover, about 2 to 3 hours.

Almost always this happens after some triggering event. Usually it is stress (99% of the time), but occasionally it is something I eat or smell. It is almost like an allergic reaction and I am allergic to stress. Sometimes a phone ringing triggers this collapse, because the phone startles me.

I've also experienced this by smelling and/or eating cinnamon, which I am extremely allergic to, but in these cases the reaction is a little slower, it takes 5 or 10 minutes before complete collapse.

It is not a fun thing, I've spent way too much time laying on the floor waiting for the weakness to pass.

[DesertFlower]

Originally Posted by Annie59

Is anyone familiar with the study on mice with mestinon that showed that mestinon caused them to startle when without they would not. When I was first on mestinon it seemed to be very mildy like that for me tho now it is just the opposite. It puts me to sleep!

Annie59

Annie59, I hadn't heard of this study with mice. I'll look it up. Mestinon makes me feel nervous. I have reduced the dosage so it isn't as bad as it used to be but still, the Mestinon makes me feel a bit crazy and jumpy. I prefer this feeling to laying in bed weak, which would be the alternative to Mestinon for me, but still I wonder sometimes if this nervousness I feel from Mestinon, which sometimes causes my MG symptoms to get worse, could be bad for me in some way.

Oh, my neuro says that Mestinon can't make a person feel nervous and jumpy. He said this after I told him that it makes me feel crazy(with details). I get so nervous at times after I take Mestinon that I avoid people. I get so nervous at times I stutter and shake (I wasn't this way before I started Mestinon)...maybe it is time to reduce my dosage again, I'm still within the range my neuro said was okay...

[Stellatum]

Hey DesertFlower, have you had your thyroid checked lately? I think 10% of people who have MG also have Graves disease (hyperthyroidism). I do. When I'm hyper, I stutter and shake--but not all the time; only when something "sets me off." One thing that sets me off is doing too much. Maybe the Mestinon allows you to do too much, and that sets off your thyroid.

Just a wild guess, but worth looking into! People with MG should have their thyroids checked. A thyroid blood test is simple, and unlike MG, Graves is easy to treat!

Abby

[Annie59]

I am wondering if there is a secondary thing that is kinda amping up the mestinon tendency to do this. I did find that the nongeneric mestinon made this ALOT worse for me leaving me in this place that first winter on it rather than generic, to have to cut back and eventually just stop the mestinon. Now I know this is one of the things the university has used against me to question my MG. If it were summer not winter I could never have tolerated going off it.

I would do a search of physical reasons for anxiety. I learned well after I was diag nosed with the vitamin D deficiency how far reaching those physical affects are esp when you add the hyperparathyroidism I had with it because I was so deficient. Anxiety and mood issues was very much part of that. I felt crazy ALOT when my vit was in the single digits. I think I had been there for a long time. I feel if doctor had found it and treated it years before I would have never ended up all sorts of psych med for a while. After about a year of working to get my vit D up I learned it made me the person again I had been most of my life. A quiet, caring nurturing 'earthmother' so to speak.

If you are not on generic I would try that to see it that helps. It seemed weaker to me in the side effects.

Annie59