Symptom questions
 

Hello everyone, I want to thank you all so much for all of your support yall have given me the past few weeks while going through this diagnostic limbo! I have a follow up appointment thursday... Not sure what they will say. I hope that some of the blood tests will show something that will give us answers.. and hopefully we can get a treatment plan in place as well- I hope to try IVIG some more if they will let me!
I feel like the IVIG might have helped some the past several weeks (it's been almost three weeks now), but the last 2 days I feel like things are starting to feel like they did a few weeks ago- speech, swallowing etc. Is that normal for it to "wear off" around this time? I wasn't back to "normal" by any means the past few weeks, and I don't even know if some of it might have just been placebo effect, but I really do think it helped!
ANyhow a few more questions about MG sypmtoms:

1 Do any of yall ever feel like there is a bit of drool in the corner of your mouths when your face gets tired? I feel like in the evenings this happens to me- not much, not even enough to know for sure, it just feels like there might be a little there.

2 My speech has been doing this for a while- months when I"m fatigued- but is it normal for MG to get nasally voice at times/when fatigued only?

3 Do MG patients have "trembling" muscles when strained? ie- When I lean on my arm/hand my entire arm trembles with exhaustion- I noticed this a few weeks before I really seemed to crash

4 My very first symptom besides exhaustion was when I went to put my makeup on after a shower - almost 8 months ago now that my eyelid creases had changed.. I have put makeup on the same way for years and it was really strange- just one day the folds were just different

5 Anyone have onset of their sypmtoms after a traumatic event? (mine was after a surgical/iud mishap and blood transfusions etc)

Thanks again for ANY advice, info.. This whole diagnostic limbo makes my mind wonder to some bad possibilities (MG is bad no doubt, but I fear far worse most of the time). Thank yall! and Happy new year and better health to you all!

The one symptom that jumped out at me was the trembling. Yes, I do that a lot. As a matter of fact, it was one of the very early symptoms I noticed. I do yoga and at the time was doing it 5 days a week. I began to notice that not only did I not seem to be able to improve on poses, but that I appeared to be actually getting weaker! What made me think I was getting weaker was the fact that I began to shake ridiculously when taxing my muscles. And it was doing it on poses I'd done literally hundreds of times with no problem. My neuro agreed it was likely MG and said I can keep going when that happens, so long as I am not literally falling on my face. Very frustrating symptom for me.

And then the eyes. Yes, mine changed too. It was weird though & I struggled to figure out "how" they changed. It felt like one eye was being pushed out of my head while the other one was being sucked in. Ultimately I have upper lid ptosis of the left eye and lower lid ptosis of the right eye. So when I look up, the left upper lid doesn't retract much and makes the right eye feel like it's popping out. Weird, I know. And the shape changed, too, to where my right eye seems more slanted on the side by my nose and out further. :confused:

Number 1 is typical for me.

Tony

Yes to all of the above.

You have 640 muscles. Think about it. Any one of them can get weak in MG. MG is truly unique in that we have muscles that "fatigue" and then get better. If muscles can't hold a contraction, you can drool, tremble, fall . . . all sorts of lovely things.

RELAX. Now go get some rest. ;)

Annie

Thank yall so much!!! Annie- I know, i really do need to chill out :) I have times where I can convince myself it will all be ok, and then other times where I freak myself out about the really bad possibilities.. My appoinment is tomorrow, so I hope we can get some more answers.. I think not really "clicking" with the neurologist i'm assigned to at the university makes me more nervous about it all. I really liked the inpatient dr's more, but the are hospitalist neurolgists only.. Wish I could switch in the clinic.. but oh well! :0
Kage- funny you say that- I also thought my eyes must be buldging out or something when I first noticed my eyelids. I thought I had post partum graves disease or something and my eyes were protruding..I couldn't really put my finger on what had changed with my eyelids, but they are defintely very different now! I used to be very active too, and then one day I simply leaned on my arm/hand to reach something and it shook and almost gave out.. very odd at 31 years old and used to be in decent shape! I would love to do yoga again, but I think it would tucker my muscles out for too long and I would be a shakey weak mess the entire time! We have that p90x yoga i really like!, or liked!
Thanks scrubbs!!!
Thank yall all so much for being so supportive and helpful! I can't even begin to tell yall how much I appreciate it!!!

Each disease has it's unique burden. Although there are also many similarities.

Patients with MG in general have to learn to cope with the very unpredictable nature of the illness, and with the difficulty of those around them (including physicians) to understand it.

I don't think there are many diseases that raise such confusion both for the patient ,the treating physicians and family members.

It took me a long time to find a team of physicians I feel know enough about my illness, are ready to learn what they don't know, and are ready to talk with each other and overall do their best to help.

Until I found them, I didn't realize how important it is.

I am sure you too will eventually find your team, which will gradually give you the stability and security that you need.

I loose my voice usually when I am on the phone. I find myself talking but no sound comes out. The harder I try the worse it seems to get. Asfor the muscles, at times they seem to do little dances. My oldest gran daughter first commented when she was 6 yrs old. I had a long sleeve T Shirt on and she insisted that I had a mouse up my sleeve and it was running from arm to arm. Another thing that happens to me is sometimes I forget basic things like names etc. It usually last for a couple of minutes. ( The doctor tells me its MG related).

SMART doc you've got there!!! :)

Thank yall so much!!! and welcome Seamus! :) I appreciate yall's replies so much! I just had my first IVIG maintence dose today.. we'll see how it goes - I got 30g which I was told at the infusion center that that's not a very high dose, I am about 125lbs.. so we'll see I sure hope it helps! My swallowing seemed to have gotten worse the past couple of days.. good times! :)

:D I'm not going senile then. Thank you I was on the phone today talking to a specialist at the hospital re an upcoming appointment I got off the phone and promptly forgot the date of the appointment

IVIg dose
 

My daughter got her first IVIg treatment about three of weeks ago. She received a low dose of 0.4 g/kg/day. She is 160 lbs so this was 29 g of IVIg per day for 5 days. I've read that 2 g/kg/day is often given for an initial dose though. It appears that you got a dose between these two dosing levels.

To figure out your weight in kg take your weight in lbs then divide by 2.2. For example, to calculate a 0.4 g/kg dose you would do the following:
125 lbs. / 2.2 = 56.8 kg X 0.4 = 22.7 g of IVIg

Sarah

3 weeks is EXACTLY when IVIG wears off. I've also been having this problem of hoarseness with my voice, much worse lately. I simply can't talk on the phone much or talk much at all, I get hoarse very quickly and the hoarseness very soon leads to shortness of breath and breathing issues that will last for hours....but that has been going on since before I even knew I had MG.

bny806,
As far as your questions, when my meds wear off I can feel the first symptoms in my face, it is difficult to smile and my eyes tend to feel heavy. When I was first diagnosed, my voice was so nasally I sounded like Kermit the frog for months, but it will get better when you get the disease under control. I'd say the trembling is from the MG also, very common for me even now that I'm under good control. My onset came slowly over the course of 6 months so I can't really pin it on any one event. But my doc wants me to get an IUD when I start on Cellcept next month, do you have any recommendation on that?

Thank yall so much!! I really appreciate it!! Thanks for the formula Sarah- good that means maybe I was getting a little above the needed dose- I was worried after the lady next to me was getting 100G!!!! (and she was a "normal" size person)! and the nurse said i was on a low dose with my little 30g!

Tracy- glad to hear i'm not alone with the voice thing!!! It's so strange that 3 weeks is the magic, or not so magic, number that it wears off in most people!!! All of this autoimmune stuff is just interesting!

leanneh6- Thanks!!!! I'm glad to hear i'm not alone with those symptoms!!! My face feels the exact same way!!! I can smile for a while, but then it's like I wear it out, and i'm done,can't smile for a while at all!! Voice gets nasally at night/end of the day too! So strange this all is! As far as the IUD goes.. that is just about the biggest regret I have my whole life is getting that thing.... however, that's only because they perforated my uterus (a VERY VERY rare complication), I was healthy before that, and since for the past 8 months have been afraid I had a terminal disease (MND disease after a dr told me he was concerned I had ALS!!).. now I obviously had some underlying autoiummune issue brewing or else the "trauma" of the IUD incident woudln't have triggered something.. but I alwyas think what if that never happened.. I Have a blood clotting disorder (MTHFR) so an IUD was the only "safe" temporary option for us (I wanted to have my tubes tied, but at 30 my hubby and dr thought we should wait). that all being said, i think usually the IUD is safe and a good option.. I think a lot of people like it.. however I know a lot of people who have gotten pregnant with one (and with pills etc however), or had complications (bleeding or pain).
Does your dr want you on it just due to it being a reliable form of birth control while on cellcept? If that's the main reason- if you set an alarm for your pill and ALWAYS take it at the same time each day and avoid interacting meds/herbs (st johns wart etc) then it's the same reliability as the IUD from what I am aware of... I don't go into ANY procedure lightly anymore, after the IUD thing happened.. but like I said for most people it's not a problem at all! It wasn't painful at all (except when they perforated me) and I think i would have liked it if it wasn't for the complication I had (user error on the Dr's part), but hey stuff happens I suppose.. so it is what it is! Good luck! Hope the cellcept works well too!!

Seamus,

my memory has also been effected by either the MG or the Cellcept. I don't which has been the cause. I can forget things in an instant. I have been on Cellcept for five years. I assume its the result of taking the Cellcept. but I'm not going to get off the Cellcept to verify my theory that its the Cellcept causing my problems. I didn't have these memory issues before my journey with MG began.

Along with the memory issues i feel a slight mental grogginess most of the time. Like I want to just rest for a while. Usually when I can get out and walk for awhile the grogginess diminishes. So don't feel like your all alone with this issue. I'm trying to figure things out myself.

thanks