Any shakiness?
 

For those of you with diagnosed MG, do your muscles shake when you try to do things? For example when I go to the dentist for teeth cleaning I cannot keep my mouth open long enough, my jaw trembles because of the strain to keep it open. It affects almost all of my muscles though when I use them to some degree, such as holding a gallon of milk out my arm shakes. I have some of the symptoms of MG, but I am just trying to figure out if anyone is similar or if mine is another type of muscle disorder.

I am living outside of my area for my insurance so can't have any test done until the holidays but have been trying to find out what its like for others. I had a bunch of tests done a couple of years ago but nothing was ever figured out my neuro had never suggested MG and it was only till recently that I began to wonder.

I guess I am wondering how your muscles behave, besides just the general no energy feeling.

Thanks

Hi Syris,

Yes I definitely experienced a shaking sensation before my muscles gave out. It's almost like when you are really over exerting your muscles, but I would only be holding a cup of tea or something like that.

I'm off to work now, but I'll check in later to see if anyone else has replied.

~Kathy

Yes! Yes! Yes!
 

My muscles do the exact same thing! Even when I smile too long, my lips start to twitch and shake! Granted, most of my symptoms have gone away now that I'm on 'roids, but they do that sometimes!

Before I was diagnosed even a gallon of milk was too much for me! Before my thymectomy I was trying to hang very small paintings in my dining room and my muscles simply couldn't handle even that. It was really scary!:(

Try to remember to not overdo it! If you feel tired, REST! This isn't something you can work through, as I learned the hard way (ICU for starters)

I am not trying to be a downer. I am just trying to make sure you know to rest when you can! Please take good care of yourself!:D

You may want to try and get into your dr's office b/4 the holidays (if it is at all possible) just to make sure you don't have a crisis - not fun!

Hang in there!
Erin

Hi Syris,

and welcome!
Yes I shake when I overdo things and am tired, my hands/arms tend to shake when I carry stuff or try to write, its usually resolved when I sit and rest. I also find its much worse if I'm unwell, have an infection or other illness.

hope this site helps you
take care
redtail

Hi Syris and welcome to the club!
I only experience that shaking during the leg and arm tests done for determination of the myasthenic score every time I consult my neuro.
And that happens only at the end of the test which is an indication that the limit is nearing…
So don't overdo it and learn when to slow down.
Maurice.

How long does your neuro test your muscles?
 

Neutro,

How long does your neuro test you for? Mine olny checks my eyes for 30 seconds and then makes me hold out my arms and tries to push them down for about 30 seconds and then checks my legs and head........does yours do the same?

Are you on Cellcept? I am and while I know it is helping, it has made me TIRED and have absolutely no appetite - weird!

Take care!
Erin

Hi Erin,
In France and Belgium, we used an Ossermann modified score procedure, which amongst others things, checks the holding of arms extended on the left and right side for a maximum of 2 minutes and 30 seconds.
For the leg check, the patient is lying down on his back, the legs up but bent at 90 ° and you should hold for a maximum of 1 minute and 30 seconds.
Your hold times give you credits (each 10 seconds = 10 points), the maximum total for all tests is 100. I'm presently at 95 but went down to 30 when I started my corticotherapy about one year ago.
If you are interested, I could translate the whole procedure and post it. I tried to find some US reference on Google, but what I could find was only the Osserman scale : I, II, III an IV.
I'm also on Cellcept: 2 g/day for about 14 months, recently reduced to 1.5 g…
Maurice.

Erin, I didn't answer your question on the possible effects of Cellcept:
My appetite is strong, even too strong but that may be due to the steroïds (20 mg/day)…
The only MG symptom left is a weakness in the legs, arms are now fully O.K. but that was the reverse at the beginning (very weak arms and legs OK), the switch occured after 5 months of treatment, when the streroïds (and Cellcept?) started to act.
Maurice.

Hey Maurice!
 

How are you feeling today? I see my doc in a few hours for another round of blood work - yuck!

I wonder why my neuro doesn't test me the same way - I'll have to ask him when I see him next..........

It may be the steroids that have your appetite going so strong, cuz' even @ 20 I was ravenous. I also had more strength, so I miss it! When I was @ 80, I was a MAD woman! TRuly mad! I was eating 5000 calories a day (but only gained 16 lbs) and was manic, and had terrible panic attacks - YUCK!

How long have you been diagnosed with MG? I'm still a newbie and find every bit of info very helpful, so thank you!

Take care and let me know how you are when you get some time!
Erin:hug:

It seems our neuros test us differently around the world. Mine makes me do the "chicken dance" amongst other things. I have to bend my elbows and flap my arms up and down, then hold them up while he pushes them down.

What amuses me is that he does all these tests AFTER I've been sitting in a car with someone else driving me for 30 minutes, then waiting in the waiting room for 20 minutes, my body is rested, and then He gets frustrated when I say I'm not doing to well. I think he needs to see me after I've been rushing around doing a days shopping, but I'm always first up in the morning.

Anyway I've had my rant for the day. Hope your day is doing well where ever you are in the world!!!

redtail

Thanks for all of your input. I definitely need to make an appointment and get in to have some tests done. Things are more back to my normal this week last week I was sick so it just made everything worse.

Hi Syris

I'm glad things are more back to normal.
Yes being sick certainly takes it out of you, I've got to the point where I tend to ignore symptoms of anything, hoping it will go away,:rolleyes: cos I'm sick of being sick and then my MG getting worse, you would think after having mg for nearly 6 years I would have learnt:D

redtail

As Redtail put it:"It seems that our neuros test us differently around the world",
here is a test procedure which is fairly common in France and in Belgium.
I find it interesting because you can test yourself at home with the aid of a relative and because it is quantified, so it enables you to follow the evolution of MG.
I think it is particularly useful in case of generalized MG, as all muscles are tested.
If you have any difficulty with the translation or with the tests themselves, do not hesitate to ask clarification…
Maurice.


QUANTIFIED MUSCULAR SCORE FOR MYASTHENIA

1)Arms stretched horizontally, patient seated: 1 point for each 10 second hold time
150 seconds = 15 points
100 seconds = 10
50 seconds = 5

2)Patient lying flat on his back, legs up and bent at 90 °: 1 point for each 5 seconds
75 seconds = 15 points
50 seconds = 10
25 seconds = 5

3)Flexing capability of the head, patient lying flat on his back
Capable of pushing against a hand applied on the front = 10 points
Not capable of pushing against a hand applied on the front = 5
Flexing not possible = 0

4)Moving from a laid flat position to a seated position
without using the hands = 10 points
not possible = 0

5)Movement of the eyes, patient must follow a finger moved up and down, right and left, at 40 cm from his face
Normal movements for both eyes = 10 points
Normal movements for one eye only or drooping eye-lid on one eye = 5
Double vision or drooping eye lid on both eyes = 0

6)Eye-lid and eye-brow closing
Normal = 10 points
Not full = 5
Not possible = 0

7)Chewing capability
Normal = 10 points
Reduced = 5
Reduced to zero = 0

8)Swallowing capability
Normal = 10 points
Reduced without choking = 5
Reduced with choking = 0

9)Speech
Normal = 10 points
Nasal speech = 5
No speech = 0

Maximum total score = 100 points

Possible pneumonia - hopefully just pleurisy!
 

Hello all! I went to see my GP today with my list o' symptoms and she thinks I have pneumonia - AUGH!!!!!!!!! I could literally scream!!!!! If it's not one thing, it's another!

I have 3 tooth infections as well (one has invaded my jaw bone) and need to have the teeth removed and implants put in (can anyone say "ka-ching"? More money! More health issues! In fact, my dentist said that if I needed an organ transplant right now, there is no way they'd even consider me due to the huge infection in my mouth! (Thankfully all of my organs are perfect)

I was crying driving home today and then found a note from a truancy officer on my front table (my son has been skipping 1 class) - what a dreadful day!!!!:Red eyes:

I tell you, when it rains, it pours! My GP told me to not let this stupid disease drive me crazy, but I am just feeling terrible! Plus, I have a little big that just won't go away......................

I do know it will get better! I do know that it will be OK. I just needed to vent!

Hopefully my neuro will be able to schedule more IV IG or plasma exchange, so I'll be back on track soon - I just hate being stuck @ home, laying around, feeling sorry for myself............I think I'll eat some chocolate and watch an old movie.......maybe cry a little more and then feel better!

Erin

Thanks for that Maurice, alot of these sound familiar, infact the last visit I had to my neuro, we talked about holding arms out in front of you as a test, and he said with a smile on his face "I just think thats cruel", I couldn't believe it, I decided it was nice to be at last, able to joke with my neuro(I didn't think he had a sense of humour!)

Erin, sure does sound like it's pouring at your place, what class was your son skipping?

Chocolate sounds like a good idea, in fact I wouldn't admit it to any one but you, but I had some chocolate biscuits just after my breakfast(not something I normally do, but with all the bad news in my family at the moment, I just needed a bit of a pick me up!)

redtail

Yeah, all of those do sound familiar! My neuro pushes against my head, arms, legs, etc and then makes me push against him. Then he does the eye thing......something my hubby does @ home when I'm weak!

Devon was skipping math. If he skips any more classes, I have to go to court! I'm thinking about pulling him from school and just letting him get his GED, but I'll have to do some serious praying about it first!

He does have a learning disability that really affects his school work and the school doesn't seem to want to acknowledge it............it just makes me so sad for him, but angry as well.........

If we do let him drop out, he has to have a full time job and go to college - I just don't know what else to do!!!!!

Does your cellcept affect your appetite? I don't have one anymore, but am still not losing any weight @ all - AUGH!!!!!!

Erin:hug:

Yep if I could have skipped a subject it would have been maths, I really hated it at school! It all sounds very stressfull for you all!

Yep at the moment, I wake up feeling nauseous, force myself to eat breakfast, and around lunchtime make lunch, and by then feel hungry, but afternoons sees me searching for food to eat, which I put down to the pred!

But this isn't unusual for me, when I first started on all my meds I would wake up every morning and be sick, this happened for quite a while, until I saw a different Dr, and he put me on probanthine, which works for me.

Kate

Shaky and twitchy all day 2 day!
 

Hey there!

I have been shaky and twitchy all day 2day! I drove the lady that helps me around my home to her home today and my thigh was going nuts!

I have also been shaky all over today - don't know if it's nerves or muscle weakness...........:(

I wake up shaking like my little chihuahua, though Mestinon or Xanax usualy helps!

How are YOU feeling today? Are you feeling better?

Hang in there!

:hug:Erin:hug:

Im not diagnosed yet but this is exactly the same for me. The muscles under my eyes twitch and quiver if I hold a smile. Even turning and holding my neck to either side makes my neck muscles shake. If I clench my fist (not overly hard) my hand shakes.

I have what my doc called 'exertion tremor'.

Welcome Spellbound!
 

Hello and welcome! You are going to love this site! Eveyone here is so friendly and caring!

This has truly been a blessing for me, cuz' b/4 I found this site, I was so scared all the time, but have found people that KNOW what I'm going through!:D

I still have the muscle problems - even though I'm on roids' - 20 mgs a day and mestinon (480 mgs a day)..........Before the roids, I couldn't even carry a gallon milk, and EVERYTHING was just too hard!!!!

When do you see your neuro? Are you on any meds? What tests have you taken? How are you feeling today?

If you need to talk, I'd love to hear from you!!!

Hang in there and do not overdo it!:D

Erin:D

I'm doing ok. Thanks for the welcome. In the UK you cant just go and see a neuro. You have to get a referal from your GP. My symptoms came on quite suddenly so at the minute my GP doesnt want to refer me. He hopes its a virus. But its not getting any better. First thing I noticed were widespread fasciculations. When this happens you fear ALS.

My GP has no idea what is going on and wants to give it time. I dont agree so Im pushing for a referral.

As for tests. Well I've had the usual stuff - liver, thyroid, white cell, kidneys, sugar, electro balances - all normal. I know something is wrong - I can feel it. As for what I have - no idea. People have suggested to me its MG because of the variability of how I feel and how I feel better after I rest. Have a look at my post and tell me what you think xxx

Sorry I cut the quote to make it shorter...

It was very interesting, and on the face of it I come up quite low on this scoring sytem. BUT I had difficulty in every single area of the test. For example, putting my arms in front of me they start to ache after 10 seconds, after 25 they start to quiver, after 45 the muscles are possitively burning. How far should you push yourself?

I dont know how fast MG develps, but perhaps if I do have MG then its early stages for me.

WOW- I thought it was just me!!!
 

It's been a while since I've been on to check in on everyone-sorry. When I saw this & read you replies, I could not believe it!!! I have had a few bouts of shakiness/ tremor-like experiences. At first, I thought it was a reaction to IVIG, then when I went off prednisone-but I never really got a definitive answer. Anyway, since I have not taken prednisone, I have not had that-thankfully. But it was a scary experience. I even had tremors on my tongue!!!! Anway, I'm sorry that you had that experience, but it is comforting to know that we are not alone.

Nancy Lee

Hello again!
 

Hello Spelbound!

I am not a DR.,but our symptoms are quite similar. I also have had the red eye/conjuctivitis thing and my muscles do shake. I also experience numb limbs and the like. My muscles also get sore after activity and relax after I rest.

MG is such a tricky disease! For me it took a full blown crisis to be diagnosed - that should neer happen. When I was finally tested, I scored positive for every single aspect of MG - across the board. In fact, my surgeon told me he had never seen a more comprehensive diagnosis of MG - EVER - in the 20+ years he has been practicing. Not a good thing!

I think the waiting and worrying were the hardest for me. Certain members of my family said I was making it up or just lazy (in fact, they call it my "lazy bone" disease. Others said it was b/c I smoked, and others said I was depressed. The point I'm laboring to make is that you know your body! You know you are sick and need to get help!

Hang in there and let me know how you are!

:hug:Erin