Weakness
 

Hi there, Im new here.

I have MG for over 3 years now. I want to ask of someone recognises this:
At home, I have times of severe weakness. Most of the time, I'm weak, when I did something it causes weakness. Breathingproblems, not being able to walk, weird speech and so on.

However, I never seem to have this degree of weakness on my appointments with my neurologist. I hate this, because this way I feel like I'm exaggerating. Like my neuro is not taking me seriously.
I do believe the reason,is because I get most of my weakness when I can relax. And at those appointments I have loads of adrenaline rushing through my body. the adrenaline is sort of getting me through it.

Does anyone can relate to this?

Doctor describes it as "well treated" but I disagree... But my muscle weakness isnt very prominent at the appointments so I get where he's coming from...
Anyway, I gave an usb with 2 short movies showing, trying to "convince" the doctor I do still have loads of weakness... Maybe you guys can also take a look and give your opinion: do i look mg weak?
I have the feeling Im not taken seriously.

I know how you feel. My weakness comes and goes like a lightening bolt. I am fine for the most part one minute; the next I am overwhelmingly weak. There is no rhyme or reason as to when it is set off. Just bam. Hit the floor. Since I increased the mestinon to 60 mg 4X a day, I haven't actually hit the dirt.

My old neurologist thought that I was crazy and imagining the whole thing.
I got a new neurologist that took things, like major medical bills from the ER for the results of falls, seriously. I am afraid that he thinks that I am downplaying my symptoms. Maybe I am, because most of the time I am ok.

Yeah, I do feel like I have to give "proof". Hard proof. Like a bloodtest with outcomes that make the computerscreen go red. Or you know, a limb that's missing.

My eyes are never that droopy you see on pictures, I have most troubles with mouth/checks/neck/diaphragma/hands.

I gave these to my neurologist over 3 weeks ago. No reaction yet.
*edit*
The words I'm saying are in dutch: the first "video 2" I have breathing problems, and funny talk and overall weakness. the second "video 1" is on a good day.

I have troubles with not feeling like I´m an idiot, like I exaggerate my weakness (maybe my weakness is not that bad?). Why can't I do stuff? Why is this, sitting up straight in a chair, typing this message like heavy exercise?
I do realise at my doctors appointsments I do look much better, but how can I help it my body is thriving on adrenaline at those moments?

Anyway...maybe you with mg can tell if this video is recognisable for you? Can you tell I have severe weakness at those moments? Or does it look acceptable to you?

You might need to get a second opinion. I will never again trust just one doctor if I doubt his/her opinion. I blindly followed a cardiologist several years ago that had misdiagnosed me and about killed me.

Sounds like you need a new Neurologist. For a year and a half, I kept a diary of activities and responses. I also noted emotional stress, physical stress as well as foods in my diet. It was a roadmap of my life. It helped my Neurologist understand what was happening. Weakness is a daily issue. I had to sell my business and can't work. I am not dependable anymore. I can do some physical activity for 30 minutes and then rest for an hour. I have noticed that emotional stress will cause MG symptoms to worsen for several days before I start to recover. Heaven forbid I should get angry! The old saying " this is going to hurt me more than it is you" when parents were going to discipline the kids, well now it is true. Stress, frustration, anger and other emotions hurt us that suffer with MG. I had never heard of MG except from a medical text book until 2009. The more I learn about it, the more I understand my body and how to change my life to make living with MG more tolerable.

ah, well, this is already my second neurolist (in the same hospital)

Sorry by the way, I just saw they don't want to show my url, because im a forum newbie.

I have seen at least 5 different Neuros. Keep hunting till you find one you trust and LISTENS to what you say and responds to your questions.
Mike

5 neurologist??? Wow!
It's great you've got the nerve.
It's hard for me to have a good feeling with any neurologist I guess.
Because of the fluctuation of my weakness.
I may have the weakness at home, but not when I'm there. So my weakness is not objectively identified at those moments. So they say: it's not that bad. Or: it's treated well.
So I go home, feeling whiny and misunderstood.

I've tried mtx and azathioprine. Am on prednison and cellcept (and mestinone of course) now. Can't reduce the prednison even a tini tiny bit, because it causes more weakness.
Prednison is so far the only stuff that's giving me less weakness. However, it is also the only medicine I have very overwhelming side effects of. Still, it's "good" for the disease so that's that.
Been to a second opinion (so that's my third neurologist, but only been there once): here was the same conclusion. Prednison = good for MG.
So I guess that's that. And I just don't want to be the annoying, constantly calling, complaining patient anymore.

Hi RavenC,

I've been going through tests from 3 different neuros for about six months now. I'm being treated for MG with Mestinon (which helps me immensely) but my blood work is normal for it so if it is MG it's 'seronegative'. I am still seeking diagnosis, especially after landing in the hospital last week with breathing problems.

To your question about weakness during neurological tests, I'm right there with you. And to your point about former lifestyles, I'm right there with you too. I was always into weightlifting, and as recently as 2010 I competed in a bodybuilding competition. It rocked!

I have no idea why I feel so weak, yet when I get to neuro exams they say "your strength is great". Come on! It's not. LISTEN TO ME, I want to tell them.

I used to hang out on this board but have moved over to the mg board at dailystrength.

Raven I saw a Neuro-Muscular Dr at the ALS center because I was at the point where I could barely walk. It was almost wheelchair time. I had seen him several times before and he is considered one of the best in this region. With all that said HE IS A JERK. He examined me and had my tests from other visits to compare notes. Oh my regular Neuro sent me to him for a second opinion because I had gotten so bad. Anyway he said the Prednisone was killing the muscles in my legs. He immediately started reducing my dosage. Within 2 weeks I could lift my feet a normal amount. (down to 25mg now was taking 60mg)
He told me Prednisone can do 3 things for you. Improve your condition, do nothing or make your condition worse. In my case it made it worse. If you read the side effects you will see it mentions the effect on the leg muscles.

restorativepose The first 6 months my bloodwork came back negative, now I am positive for 4 different antibodies. The reason I went through 5 neuros was to find one that was able to hear what I was saying and think out of that little black box they try to put everyone in.
Mike

Maybe it's because you "rest" before you see your neuro....

I've found that I have to schedule my appointments in the late afternoon - if I go first thing in the morning, I'm not tired enough for my symptoms to be noticeable.

And maybe you should take a walk around the block right before you see your neuro (or whatever it takes to "wear down" your muscles). Don't do anything that will land you in the ER, but enough to work the adrenaline edge off.

No matter how good a doctor may be, unless he/she actually HAS MG, there is no way they can fully appreciate how we feel. None of us could have understood it until we were the ones experiencing it ourselves - it's still hard for my family to understand, but they're getting better (of course, I'm getting slightly worse, so it's more visible).

The Doc ran tests- results
 

I would like to share what my doc found. Hope it helps.

I had soooo many health problems 4 years ago. Muscle spasms, twitches, asthma from acid reflux, severe pain in sciatic nerves on thighs, bouts of weakness that made me feel my life's essence was draining out my abdominal region.

My Doc tested me and found that I had almost no hormones of any kind, except estrogen, since it's everywhere in our environment. Also low in Vit D.

So now I am on progesterone, testosterone, and armor thyroid and vit D. Graduated from being on pregnenolone, and dhea. He said it was from ADRENAL FATIGUE from years of unrelenting stress. Regarding the asthma from reflux, that was from a low thyroid, since this makes your muscles and ligaments weak. The stomach has a sphincter muscle.

Now I am mostly normal. But occasionally have hypoglocemia from the low thyroid. The meds help, not cure. Was told to eat protein. This did not work for me, but I discovered if I EAT OATMEAL with breakfast, even if I don't want to, I tend to avoid becoming weak throughout the day. If I miss and get weak, there is no fixing it the rest of the day.

God Bless. Hope you all get better.:)

So true!
My trip to the appointments:
taxi ride 1,5 hours long (most of the time I get so tired I fall asleep for those 1,5 hours. Then waiting (sitting on the chair) for the appointment, most of the time I have to wait at least 30 minutes, sometimes an hour. So it's a lot of resting, sitting, doing nothing before I go inside.

And you're right, only someone who actually has it, knows how it feels.

I'm getting worse too, so for me it's totally visible know. My facial expression is gone and I walk funnily. I don't get to see my neurologist in 4 months though...

@Jomamma: well....good for you. But being weak and being MG-weak is not the same. But good news you're doing better!