New symptom, feeling yucky

[Momzilla]

Hi, everyone~

Although I really enjoy being one who is there to help answer questions (or direct everyone to Dr. Q's informative posts), and at least try to buoy spirits, I am finding myself increasingly "needy" lately.  I know I'm in the right place with all my friends!

I shared recently that I am currently being tested by a very interested, empathetic neurologist (Thank you, God!) and just in the nick of time, as I was at the end of my rope, really, here in Limbo.  

I haven't shared that I am having hot flashes.  Yea!  A sign that I am entering another phase of life, that cool club of women that seem so wise and at ease with themselves, even with their fans in hands.  My 'flashes' are not uncomfortable, especially since I'm a Northern girl in the middle of a frosty, snowy winter right now.  I bring this up, because, I am waking in the night a few times with these little reminders of my new approaching wisdom.  

I also have had very strong facial parasthesias lately, and hardly any sensation on the left side of my face or nose anymore.  Well, when I wake in the night and when I wake with my alarm clock, sometimes my left eyelid doesn't open.  I noticed this first when I woke up with my alarm clock.  It didn't open, and I thought it was stuck with the crusties, or something, but it wasn't.  I had to "think" to open it.  When it opened, it was fine.  I was groggy, so I kind of forgot about it until it happened again.

Then when I started waking in the night with my warm epiphanies, I noticed that, again, my left eyelid, didn't "know how to" or "didn't know it was time to" open.  I had to "think" it open.  Once open, it's fine.  Not ptotic or droopy.  Perfectly fine.  It just needs a kick start.  

My right popped open as it always does.  This has happened maybe 5 times that I recall now.  It bothers me, because of the symptoms I have with that side of my face.  Also, the left side of my face doesn't "smile" as big as my right.  I know I haven't had a stroke, and I have had an MRA done, which was fine.

I'm kind of weirded out about it.  I will call the doctor's office tomorrow to report it, but wondered what anyone else thought.  Has it happened to you?

Thanks,

I know there is a question about my "handle" now...I would love to go around as Hot Pants, but my 7 yr old reminded me about how very 'squishy' my behind is yesterday, as he bounced his basketball off of it several times.  Alas, I must remain....

Zilla*

[SOONERMOM]

What you describe is exactly how my OB/GYN explained hot flashes to me!  almost word for word.
Stacey

[Momzilla]

Hi, everyone~

I'm not feeling poopy, really!  Just fatigued.  I thought it was from waking at night with the hot flashes, but last night I only woke with one.  I immediately fall back to sleep.  And I went to bed very early after falling asleep on the chair with my son even earlier!

I'm afraid I am starting to get the fatigue back that I suffered with before, that had me on half days at work.  Yesterday was my day off, and I had my mammogram done, got my hair done, had a hot lunch date with my 7 yr. old at his school, and it all just about did me in.  My 17 yr. old had his appointment with the psychologist (the one who's sure I don't have MS without eye symptoms), and I fell asleep in the waiting room.  Darn it!

I will talk to my doc more about the eyelid thing when I go in next time.  Thanks for all the info.  Sometimes, now, it's just at half-mast when I wake up in the night.  Or twitching really wildly.  It also twitches underneath my eye during the day.  Maybe it's nerves.  And maybe pigs fly.  Regardless, I will explain it more carefully when I see My Guy.

I will call for an appointment with my ObGyn, too.  My grandmother apparently started menopause at age 35, if my aunt and mother are correct.  The two of them had hysterectomies very young, as was in fashion back then.  I will see the doc and make sure my flashes are indeed wisdom flashes.

They seem to start from my torso and work their way up to my face.  Not sure if I actually flush.  Haven't checked.  And hubby hasn't seen me yet.  They only last about a minute; less than two.  So I'm not up to full wisdom yet.  Working my way slowly....

Hope everybody is having a good day.  Take care and thanks so much for writing!

Feel well!

Zilla*

[Super_sally888]

Hi Mae,

I don't have diagnosed MS, but I do get 'hot flushes', flushing (my face goes red), and night sweats (particularly if I nap during the day - never said I would make much sense! :) ).  My obgyne also tested my hormones and they're fine.  I'm 37 too.

Sally

[mae1]

Hi Zilla,
I have been getting night sweats for about a year now. I am 37 years ols and my gyno. checked my hormone level and said everything was fine.
my neuro said he has had other patients complain of this before.
at first i thought maby it was my treatment but than I had to go off the treatment for a while and I still had the night sweats.
since this has began I have talked to many other ms patients with the same problem.
for what ever reason my body gets over heated when i sleep and it do's make my symptoms worse at times, but as soon as I get my bidy temp. down the symptoms go away.
good luck to you,.
april

[monotreme]

Hi Zilla,
  Are you ok??  We missed your witty comments on the forum today!
Elaine

[SOONERMOM]

I had an OB/GYN appt today and I HAD to ask if what I was experiencing was a hot flash.  She told me that they are brief, and since mine go on all day that wasn't it.
It would've been nice to have some symptom NOT related to whatever this undiagnosed condition is--but .....SIGH...I guess I will have to wait a few more years to gain my "wisdom".

Hope you are feeling better today,
Stacey

[Heather3418]

Sweetheart, I am so sorry that you are feeling so crappy.  I cannot even imagine what you go through with your illness and raising all those kiddies.  God Bless you.

I hope you know that you will be in my thoughts and prayers, dear one.  Always.

Heather

[Super_sally888]

Hi Girl,

Fun time you're having.  Sounds like your face could become a contortionist all by itself.

Your dr can test hormones to see if the hot flashes are menopause related.  Most likely.  Though it is possible to get flushing with other conditions....

Hang in there.  Hope that this is a transient thing that passes quickly.

Hugs and Cheers

Sally

[Quixotic1]

Hmmm, his mind must have been elsewhere.  He was thinking "difficulty openinging your eye", not that it was totally shut, then peopped open and was fine.

Blepharospasm (usually seen and treated by ophthalmologists, maybe he's just not familiar with it) is a "focal dystonia" of the group of muscles that squeeze the eye shut.  It has been reported several times occurring in MS, but is also seen more frequently in other neurological disorders.

The other possibility is transient weakness of the muscle that lifts the eyelid.

He seems to be thinking about Myesthenia Gravis which is an autimmune block of the neuromuscular junction.  MG often presents as a ptosis or lagging of the eyelids which increases as the day wears on and improves with rest.  People with MG are almost invariably better in the morning and become weaker with the day's activity.

Your eye is shut until it "pops open" and is normal throughout the day or days until it happens again at night or when you awaken.

He'll hear the difference when you see he next.  Also some people with blepharospasm find that certain ways of touching around the eye, simple massage or pulling up on the lid to see if it will awaked also work.  You might try this to see if you can find the trigger for opening it.

As long as it remains relatively minor - just a few minutes until it opens, it can probably wait until you see him again and explain the difference.  If it starts to stay shut, or becomes associated with other spasms or movements of that side of the face (a condition known as hemifacial spasm) then you would need to have him see you sooner, so he can document it.

Did this help?

Quix

[Momzilla]

Well, my doc just called, and he said he was glad I called, but the eyelid doesn't seem to correlate with my other symptoms.  He said that if it continues, he will do a blood test for Myesthenia next time.  He said that he is making a note in my chart right now, and will ask me about it next time I'm in.

Hmmm.  I told him that a friend of mine who is a doctor said it was a blepharospasm, and that she thought with my other symptoms, it was better to just call and report the new symptom.  He said, Yes, that's just the kind of thing he needs to hear about, but for now, see how long it lasts and he will check it with a blood test next time if it persists.  For now, it doesn't correlate with my other symptoms....

I was glad he called me back and he did make anote in my chart....any thoughts anyone?  I guess this is the end of the mysterious eyeblinking episode....


Z*

[Momzilla]

I won't forget, ess!  I loved reading your message.  Thanks!

Zil*

[essdipity]

Great, let us know. And remember what I said!

ess

[Momzilla]

I just can't tell you what it has meant to get all your responses.  Thank you, very much!  Wow.

And, boy, did I feel the pressure to call my doctor's office this morning!  I couldn't very well have faced you all if I hadn't called.  I did.  The medical assistant returned my call and listened to my brief description of the eyelid thingy, sans my delightful addition about the 'blessed events of wisdom.'

She is usually really pleasant, and was, but said, "All right.  I'll tell Dr. L."  That was about it.  I sort of gathered she meant it was worth reporting to him, rather than try to explain it away to me herself.  

I'll wait and see....

Zilla*

[cjacks]

Zilla

I'm sorry to hear you're not so hot anymore..    oops , type-o  meant to say , feeling so hot.  :)    or too hot , now I'm confused .  

I started with hot flashes at forty-five .... and waking up at 3a every morning .  I was not alone many old friends and my sister had this same pattern.  In the winter I'd go stand outside for a couple of minutes. very effective.   So we become wise sages , hhmmm..  good to know, I'll be waiting .

About your eyelid thingy and the face thingies...  I get , what my dr. calls trigeminal neuralgia..  The numbness , pressure, tingles , itchy .. only a few times with moderate pain .. mostly on rt. side.  I think I'd be some what concerned if one eye did not get the subconscious( reflexive ) command to open and needed a me to tell it ...  but this stuff sort of gets common and we overlook it or say  ' one more thing to tell the dr when I see him/her '.   I need to tell my leg/foot to move when stepping off a step . Or when on a walk and I stop , then to restart to walk sometimes I need to mentally prompt myself to 'move '.  
And it seems like no big deal , just one more sx.  We/I get use to most stuff. How do we know what to report right away and what can wait??  

I'm glad Quix knows what the eyelid thingy is , an eye spasm.. if she says call , you call !!

Z., you can feel needy any ole time , you give soo much , let us give back..

Those darn seven year olds ..  reducing our Hot Pants  to   Saggy Pants  .. squish squish


((( HUGS)))  and  PRAYERS                    Jo         Feel better

[monotreme]

Now Zilla, we depend on your wit and cheery disposition and I am so sad that you are having new symptoms.  

In reading Montel Williams' books, he mentions that he has to think about what he wants his muscles to do for awhile and then that helps him to do the movement.  So your comment about thinking your eyelid to open sounded just like what he wrote.

Please call the neuro as Quix  said.  It is a new symptom and helps with diagnosis.

You have a very unique way to describe your hot flashes.  I loved it.

Elaine

[Quixotic1]

And, Oh yes....Tell your new neuro Guy about it first thing in the morning.  Leave him a note or fax the explanation you gave us (sans  the weird rite of passage stuff) to him.

Ya hear?

Quix

[young at heart]

CALL THE DANG DR.,DON'T TRY TO WAIT IT OUT,HE NEEDS TO SEE WHATS GOING ON.

BEST OF LUCK WITH YOUR MRI

T

[Amyloo]

Well I'm glad Quix knows what it is; I sure don't but am glad you will be calling your doctor.  I think that would freak me out if it happened to me.  I'm glad you have a neuro that is helping you (why are they so hard to find?)  You need some answers woman.  Love to you, Amy

[Quixotic1]

Hi, guys.  What Zilla is describing is called blepharospasm, a spasm of the muscle that closes the eye.  In the context of MS it is caused by a lesion on the brainstem, but it can occur all by itself (essential) or in other neuro diseases.  You can google "blepharospasm."  And it is not related to the blessed time of life....Zilla...you can have all my wisdom if I can get rid of these blessed events.

Q

[nette573]

My eye has not been that bad yet.  My right side of face is more drooping than usual and my eye is also but it will open.  When I have over done it and are really tired it really is drooping and I catch people starring at my face.  Its really upsetting.  

Do call your doctor and let him check you out!  You are very supportive of everyone.

Prayers to ya,
LYn ette

[sllowe]

Hey Zilla Girl,

I'm sorry you have all this going on.  I'm also sorry I haven't been around, although you've had enough to keep you busy.  I wanted you to know that YOU rock, and I'm so proud of how you've gotten through the past week.  

You've got a lot lined up, through your persistance. Please, please Zilla, tell some about this, let them see it.  It's not responding properly, something is going on. . . .

Your tough as nails, I, we know this, but girl it's time for some answers. Call that Dr.  Go see him/her. . . .let them take a look, before the MRI (you snky fibber - LOL, I couldn't be more proud of that thread).

Maybe they will add the brain again (if they didn't already).

Much love to you girl,
Shelly

[ELT]

Hey again, I mentionned my right eyelid doing that one day.  It was like that as i walked through IKEA lol, ppl looked at me a little oddly.

   What I was getting to, was that that was the eye I initially had trouble with.  But it is now my left eye which is bothering me.  The right eyelid never did it again, it is just a little droopier than the left one.

   My left eyelid was twitching like mad for over a month, starting in nov., Then I got vaseline smear vision for a cpl weeks, this has almost entirely cleared up, cept when i got a little hot, cause of anger at stupid man friend, lol.  

   I have lots of facial stuff going on.  What appears to be bilateral trigeminal neuralgia.  So, I wouldn't be surprised to find out my drooped lid was the first sign of facial difficulties for me.  I couldn't will mine open from when I got up at 5:30 in the am, til almost bed at 8.  I held off getting it looked at, cause I was out of town and figured I'd see my doc next day.

   It never reappeared, so far.  The twitching left lid and then visual stuff makes me a little worried.  My whole face seems to be involved now.

   Erica

[Rena705]

Hi Zilla...sounds like you are acting up again to get more attention!  I thought we told you to stop doing that!  If you want more attention, just ask!

Seriously though honey, from one that has a droopy eye and chronic left side facial numbness, what you have doesn't sound even close to what I have.  Is your whole side of your face sagging?  Have you looked up Bell's Palsy?  My Mother has had it and it was so severe that she was unable to open her eye on the side that was affected.  We noticed that her face was sort of droopy and her smile was limited on one side.  Might be something to Google honey...just a thought.

As far as the night sweats, I went through a bout of that in Oct. 2007 but didn't mention it to anyone hoping it would go away...I am only 44 and NOT ready for that!  I haven't heard that there could be a neurological connection but why not...there seems to be a connection to everything else doesn't there???  I would call my neuro about the face thing though...it could be serious and I don't think it's something to wait on really..do you?

Lots' of Hugs,

Rena

[LLWB]

I would raise you two hot flashes, and take 3 cards..Just another phase of life! Just think, you can't have a brother for your son!! But joking aside, please do call your doc when you can. Having to "think" your eve open doesn't sound good.Take care of yourself, so you can take care of us................Maggie