symptoms that come in spells
 

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

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.

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.

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

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

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.

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

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...

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

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

Abby, I had to do some thinking about this. Why don't you keep a diary of foods you eat and what you do for a week. See if there is any correlation between those things. If not, you may want to consider this:

http://neuromuscular.wustl.edu/synmg.html

Congenital MG with episodic apnea
l Choline acetyltransferase (ChAT) ; Chromosome 10q11.2; Recessive

or

Weakness + Episodic apnea & Bulbar dysfunction19
l Sodium Channel - α subunit (SCN4A) ; Chromosome 17q35; ? Dominant
SCN4A gene mutation

It could be an electrolyte issue. Who knows. Without testing you when it happens, it'll be hard to say what it is.

Could be MG. You walk, talk and breathe like MG. ;) I'm sure the lack of antibodies haunts you. It did me too until I found out I do have them.

I guess I would say to make sure that you're not out driving or something when this happens. Scary no matter what you're doing. Tell your neuro about it.

Annie

Annie,

Thank you so much for working on this for me. You are really an inspriation to me.

Both of these syndromes you mention have the onset of symptoms in infancy or early childhood. I'm 44 (and have had these symptoms for a year). Also, no apnea.

You're right--I sure would feel a lot better about this whole diagnosis if they could find the antibodies! What's going to happen, I suspect, is that either the Imuran will work, and that will indicate an autoimmune disorder, or it won't and we'll have to rethink all this.

I will start keeping a diary. I will! Right now.

I've had my antibodies tested three times in the past year--always negative. I think they're done testing me...My latest SFEMG established the diagnosis of MG firmly enough that I'm going to start Imuran. As soon as I work out one sticky issue with my doctor (I think I'll spare you guys the details on that one--I do have high hopes that we can work it out soon).

Thanks again. I think that these attacks are the same thing that I have throughout the day. All the symptoms are the same--just more intense.

Abby

Maybe you could try to eat a banana right away. Or an avacado. ;) If it is a potassium issue, you'll get better. When was the last time you had a metabolic panel done?

Dok-7 is a possibility too. Have they tested your CPK?

I hope the Imuran works. Maybe you need to rethink Mestinon. You may not be able to tell if it's working but it might be helping enough to keep these episodes at bay.

Well, I don't feel very inspiring but if you say so. :thud:

:hug:
Annie

I should add that they don't know everything about these damn syndromes. There are over 100 of them and counting. Some show up mild in childhood and don't rear their ugly heads until later in life. Since they often get missed, all of the "documentation" of them goes unnoticed too.

I hereby resolve to eat a banana when I have a weak spell. Can't hurt! And I like bananas.

I am on HCTZ, so I have my potassium checked regularly. It's been a while, but I know I've had it checked since I since I started getting these spells.

A CPK test, yes, that's the first thing they checked when I showed up at the neurologist.

It really does feel like myasthenia--all the same symptoms, just more intensely. What confused the doctors at first is that my main symptom is this weakness in the muscles in my sides. That's evidently atypical as a most severe symptom. But I have more typical MG symptoms, too: weakness in my arms and legs (exhausting to comb my hair, etc.), weakness in my neck, a little bulbar involvement, and some eye stuff.

I wish I knew more about what the neurologist in Boston saw on the SFEMG of my face that made him so confident in the diagnosis--I don't understand too much about what sort of details that test gives. He also said I have Cogan's Lid Twitch, even though I don't have noticeable (to me) ptosis. I'm really proud of that.

Thanks again, Annie.

Abby