Face Freezing up
 

Hi Erin and anyone else that wants to join in!

I was reading some old posts- the cricket is on and Im feigning interest to keep the peace!

I read Erin that your face froze, I was wondering if I tell you my symptoms when mine did it if you could tell me if yours was like that? Does that make sense? sorry if it doesn't Im shattered and I should really be in bed doing this not sat on the recliner!

On Monday 1st of June I was doing my usual, pushing myself to the limit cleaning and messing about. It was very hot hottest day of the year so far.

My face felt funny, stiff like it wasn't moving properly. I tried to whistle couldn't make the shape with my mouth, tried to smile made a face that would scare small children! Over the next four hours my face became frozen. The corners of my mouth turned down and I had to talk through gritted teeth. I went to hospital where they did b***er all. After 12 hours it wore off. In those 12 hours all I did was lie still on a bed, no talking, no watching tv or listening to the radio. Did yours do something similar?

Thanks
Rach:p

Hi Rach!
 

Hi Erin,

Thanks for your reply. My mum told me this morning you had posted. We were chatting about how many other people on here have struggled to get diagnosed, and how often sfemgs are done in the wrong places. Mine have been done in my arm, which isn't where I am weakest, my legs are the weakest. They have also been done around my eye. They have always shown nothing.

Well what did the Drs say.....absolutely nothing thats when they gave me the BS diagnosis of Cortical Plasticity. So it didn't help.

Im on my way down again at the moment. I know because I follow a pattern, it starts with night sweats, then general weakness. So struggling to move around my house (more than usual ) and struggling to type as my hands dont want to lift up to hit the keys. They are shaking with the effort.

I just pray I get somewhere with Angela Vincent.

Thanks you

Rach :(

Wow, bless your hearts. Thankfully I have not had that happened but my feet will freeze up and get great pain in them, like a hot poker sticking me. Actually my whole left side is weaker then my right and also "numb-tingly"

Oh and Dr. told me the pain is Fibro Myalgia {sp?} I think that is the new answer for everything.. LOL

I've had the face freeze countless times. Lasting several minutes to a couple of hours. When the right side of my face drooped, it took 6 months to go back to almost normal again. To this day I still don't have my full smile back and my right eye, which was my worst one, still has a slight droop to it that the Dr. says is permanant. Compared to what I did look like when all this was happening, I am very happy and grateful to look this normal again!
Hugs,
Pat

Hi guys,
I too have had "frozen face" on occasion. Mine always only lasted for a few minutes (thankfully). It used to happen regularly when I was teaching and talking a lot (as I regularly do). I used to make a fish face (suck in my cheeks and chew them a bit to get feeling back) so often that my kids started making the same face back to me. It was pretty cute actually. I'm lucky that I never had any noticible drooping other than in my eyes.

Hope you have a great day!
~Kathy

Thanks guys ! You are so supportive here I never feel like a numpty when I ask a weird question!:grouphug:

Hey Rach,

I also have the frozen face. On my last day of work, before I asked for time off because I could barely be understood, I was talking like the God father, marble mouth and unable to move my face. It was really weird!

It definately got worse the last couple of months. One time, I couldn't move anything for about 30-minutes. I couldn't even close my eyes. This also happens often if I experience a strong emotion, like laughter...lol...Imagine making a funny quip, and the person hearing you suddenly looks like, at first, you've just punched them, and right after, they've just had an injection of botox! lol...Anything extremely funny to me causes me to appear as if my face is melting...lol...I don't mean to make light, but it's good to know that it DOES get better, as so many others have said....That's the brightside to this--As hard as it is at first, there IS treatment....Thank God.

I remember just before I was diagnosed, I had just finished clipping a dog, and was talking to its owner. All of a sudden the right side of my body stopped working, but more noticably my face. All I could think of was, aaahhhh I'm having a stroke (Dad had had one about 2 weeks earlier) I was terrified, but can now look back and realise what was going on.

Now I know I'm having a bad phase if my fingers don't want to type/write chop food etc, and I know its time to sit and relax for a while.

Hiya,

Just to let you know its doing it again right now! Its very hot and I have basically been very stupid and done whey too much........

Did the cleaning...make legs shook throughout had a couple of hours rest and then walked the dogs. Sat here now with the clown face! But I wont be calling for anyone as its pointless. Im just hoping it eases up soon as Im starving!!! Oh well I suppose I could melt some ice cream!

Love Rach x:winky::circlelove:

Hi Rach!
 

Ensure
 

I agree with Erin. Ensure doesn't taste that great, but it's great for you! It helps to maintain energy and weight a bit while you're having difficulty with the eating. I'd eat it whenever I felt like it (already thin and don't want to lose more weight). Look into it, Rach.


Nicky

Forgot something......
 

Hi,

I managed to eat something as it wasn't as bad as it had been previously. I haven't had it yet today but Im getting the familiar feeling in my face again.

I got sent to bed by my husband! It was 5.20 in the evening and thats where I stayed. I took my next dose of mestinon and that worked and relieved it.

I am concerned at the moment as I seem to be very up and down. I have three dogs and my boy doggie (who's a mummies boy) hasn't left my side for two days now. Everytime I have been really bad for a few days before hand he's really clingy. Has anyone else noticed this with their animals? He literally follows me everywhere and gets very anxious.

I also woke up to find I had a kidney infection again, so that probably hasn't helped things. Im now taking anti biotics so I know the next week is going to be pants!

Im trying to do the absolute minimum, but you guys and girls know its hard. The dogs make such a mess of the place! they are really moulting at the moment and theres great balls of fluff everywhere. Plus the dust they create. Doesn't look lke I did anything yesterday cleaning wise.

I just feel so guilty sitting or lying around all day whilst my husband goes off to work. I know he doesn't mind if the house is a mess, but I dont feel I contribute anything and it all falls on his shoulders.

I guess everyone on this forum knows this feeling, I find it very hard to deal with.

Thanks for your support and advice its noted and appreciated.

Love
Rach:Slip:

Hi Rach!
 

:(Hey Rach! Sorry to hear you are feeling so puny.....my dogs do the EXACT same thing when I am about to crash or feel awful! They stay right by my side and attack ANYONE that comes near me - esp my chihuahua, Coronado:D. He was too cute! Right after my thymectomy, he would sleep with his little head on my chest and his "arms" wrapped around my neck. :D

Be forewarned that antibiotics can make you weaker - learned that the hard way, as no dr told me told expect it!:mad:

Saw my hemo today - I have gained 30 lbs in the last 5 months - 30 freakin lbs! Can't believe it! I am such a hog right now! I hate to look in the mirror b/c I still can't believe how much I've changed!:( I shouldn't be whining, b/c b/4 I wasn't even able to swallow, but I have morphed into this hairy, fat, sweaty creature!

Enough ranting for today!

Big hugs!
Erin

It's so funny you all are talking about dogs today. My husband called me from work today and said he wants to get me a dog, which is a big statement from him. Rach, be careful about the antibiotics like Erin said. I've had problems with those as well.

The other day I mentioned that I was having a double IVIG treatment. I usually have 400mg but this is 1 gram in a single infusion. Well, it did help the MG, but I've had some serious side effects. First, I broke out in large hives all over my arms, face and back and felt like I had been run over by a truck. Yesterday morning I woke with horrible head pain and nausea. I've been in bed ever since except for going to my doctor twice. My blood pressure has spiked to 180/120 (it's always normal). I read online from the IVIG manufacturer that people over 50 are not recommended to have more than 400 mg in one infusion, that anything more is generally more than your body can tolerate at that age. It listed the dangers as spike in blood pressure and severe headache with vascular complications. Well, I've learned a lesson here - just an fyi to everyone in my age bracket to be cautious in this regard.

Rach, I don't know what antibiotic you're taking, but if you go to Myasthenia Gravis.org, you can get the list of drugs including antibiotics, that we should not take. Hope you start feeling better soon. REST! ;)

Hugs,
Pat

My dear dog, Ned(RIP) was totally amazing. If I was having a bad time, he would jump up on the bed uninvited, which he knew he wasnt aloud to do, but he knew I needed him near.
Once when I collapsed in the early hours of the morning on the way back from the toilet, he curled up against my back, until I was able to crawl back to bed. He certainly looked after me in his own little way.

Hi,

thanks for those replies. It was great to hear about mans best friend protecting us all!

Im on Augmentin or co-amoiclav, its penicillin. So that should be ok. I just know with an infection and antibiotics I wont be good.

My face is playing up again today which is great as I have the washing machine repair man coming and hes going to think Im a freak! Wshing machine blew up saturday and this will be his second visit! Wish me luck as I dont know how much longer my neighbours will let me use their machines! They have been absolute stars!

Thanks again
Love
Rach x:D

hey rach hope today is a better day all around think on the positive side perhaps your neighbors will think you have a little something going on with the repairman we can all dream a bit that's how rumors start i laugh beause i have been to the movies 3-4 times with only my brotherinlaw when my hubby and my sis didn't want to see what we did. she's 6 yrs younger,skinner, no gray hair,fewer wrinkles etc imagine if someone who knows them sees us and thinks boy did she age quickly!:icon_surprised:

Hiya,

well the rumours will be starting as the repair man came out today and he didn't have the correct part for the machine. So hes coming back tomorrow!

Ive also developed a case of oral thrush- it tastes like Im sucking on an old penny and my tongue is just white! Lovely. Looks like I will be phoning the drs tomorrow.

cheers
Rach:Bang-Head:

Hi Rach!
 

Hi All:

This is a list of antiobiotics that worsen MG from a presentation at the annual MG Foundation conference that just took place in North Carolina.

Macrolides
Azithromycin [Z-Pak®]
Telithromycin [Ketek®]
Erythromycin
Aminoglycosides
Gentamycin
Tobramycin
Neomycin
Fluoroquinolones
Ciprofloxicin
Norfloxicin
Ofloxacin

Thrush
 

Hey Erin and Rach,

What is causing thrush for your guys? Is it prednisone? Hypogammaglobulineria (sometimes happens with MG)?

Probiotics can help for this too!

Hiya

I first got oral thrush when I was put on prednisolone last year. Haven't had it since.

Im taking antibiotics for this Kidney infection, which is the second one in 8 weeks. Which I think has given me the oral thrush. I had a look on the internet and augmentin does seem to have that effect.

One of the "cures" was raw garlic! eek! But hell if it works I shall give it a go!

I did see that one of the causes could be a dry mouth. I get a very dry mouth from taking propanthaline to combat the nasty side effects from Mestinon. So I guess it was just waiting to happen.

The back of my mouth leading into the top of my throat is just burning. My tongue and the inside of my mouth have just gone white, no raised plaques just white.

Just another wonderful day in the crazy world of Rach x
Going to get hubby to get me some garlic and some Daktarin Gel and hope that clears it. Plus some probiotic drinks as I could definately use some good bacteria!

I can't face going to the Drs at present Im avoiding contact with the medical Profession ( I use that term losely!). I just feel so let down by them.

Plus my boy doggie has hurt himself. Think its his back. Hes been to the vets tonight and acted like he didn't have a care in the world! The vet said he wasn't surprised as my doggie didn't want to be the weakest one in the pack. Poor baby can't get up on the bed, finding it hard to get up and down the stairs. Hes curled up on his bed - which he never sleeps on! as mummies kingsize is far more his style! Hes had an injection so we will see how it goes. Hes got some anti inflammatories to take for the next couple of days. Hopefully it will settle down.

So yes this is the house of the sick......officially!!

Cheers
Love
Rach x:eek:

Hi Nic!
 

Hmmm, I just did a Zpack about a month ago.

Hi Tbarney!
 

Hi Tbarney! How did you feel after the zpack? Sadly, a lot of drs are waaaaay out of their league when it comes to MG - luckily my GP has software that she uses to check for any/all meds that can make me worse. You would not believe how many drs have turned me down or told me they cannot treat me b/c I have MG - they are truly AFRAID of all the meds I take!

How are you feeling today?

Big hugs!
Erin:D

It seems all docs have the potential to screw us up with some med that we shouldn't have - all with good intentions, of course! (gag on the sentiment)

I have to chime in on the dog stories though. I had a german shorthair named Heidi that just died last year. She was SO sensitive to my conditions that when I had problems, she walked so she lightly touched my leg at all times. She saved my life once by nudging my arm so many times that she got my adrenalin going well enough to pull me out of my stupor and realize I was barely breathing and needed a Mestinon. She stayed right there staring at me until the Mestinon kicked in, then she went and laid down. Close by, but not right against me.

They are such amazing creatures. I miss her alot. I have 2 labs now, but they don't have the sensitivity yet. I whelped the litter when Heidi was born, so we bonded almost from the day of her birth, so I don't know if these two ever will be like that. They sure are good for a laugh and a bath though!

Hope you get lined out there Rach. I'm sorry bout the kidney infection - those are so painful. And try not to feel guilty about sitting around! Just remind yourself that if you don't learn to ignore the dust bunnies for now, it'll be that much longer before you are able to do something about them without wiping yourself out. Patience is key with this disease!

Hugs to all!

facial features
 

sometime my eyes twitch so much that i know that people cant see it but i cant stand it - i also find that when i take a picture and even if i am smiling it always looks as if i am sad - i find when i sleep or even wear sunglasses in the house so my eyes are not so sensitive it feels a little better

Hi ss822!
 

Hi ss822! Have you been dx'ed with MG? It sounds like your face may be freezing up as well! I look @ old pics b/4 my dx - and I always looked upset -even though I was happy! It crept up on me so slowly that I wasn't even able to realize it until I wasn't able to kiss my son or hubby! :(

Ice packs are great for when your eyes need a break. They help quite a bit!

When you have some time, I'd love to hear more about your MG!

Erin:D