Multiple Sclerosis (MS) Support Group

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kathi6635 12/09/2011

Some of you have mentioned Facial pain and numbness and I was just wondering if it's the same as what I have had for several days now.

I have sharp stabbing pain off and on started on left cheek now right but not as often...my face burns really badly and if I touch it it feels sore like a sunburn. It was up as far as my left eye the other day and it was painfull to even blink.

Something is going on because my arms are week again like I've held them up too long, vision is messed up, and I almost fell five or six times yesterday and four times today. My legs just don't want to hold me up like they should. I've had hug's that are starting to hurt again and just cry at the drop of a hat.

I was doing so well for a couple weeks then this all started on Mon. I'm taking Neurontin for Tremors and thats been a great help but then today my tremors came back, not badly but they are there off and on.

I have little if no energy at all this week and my appitite is near nil right now....don't mean to be a Wendy Whinner but I really can't figure this out.

I have had the facial pain off and on for two years now but this time it won't go away like it did before....I've also had really sharp stabbing pains in my head in different spots that stop me in my tracks....they don't last long but they are intense. I've had these before too and they only last a day or two and went away but these seem to want to stick around awhile.

I appreciate your help

Kath

deleted_user 12/09/2011

When my symptoms get too strong or are sticking around too long, I try to sleep if I can. I try not to take any meds for fear of getting a tolerance built up, so when my symptoms get too bad I can take some ibuprofen & it will help. On my really bad days, I'll take something stronger like Percoset or Tramadol, but I have to eat something too or I'll get sick to my stomache. Some days, nothing helps & I'm forced to suffer thru, since I can't sleep 24 hrs a day, even tho I'd like to!
I'm sorry that ur having such a hard time right now, & I hope u start feeling better soon! Hugs!

deleted_user 12/09/2011

I had horrible facial pain last feb. Burning and spasms bad. Really bad at night. Felt like this horrible pulling along my jaw. Each side took turns for a good month or so. Nothing new yet. Oh and I would ALWAYS feel as if I were getting a sty in my eye..but never got a sty..just the feeling it was coming on?? SO WEIRD!!

kathi6635 12/09/2011

Thanks so much leah and Heidi, I see I'm not alone again.

I just started the Neurontin last week and can't take it as it's perscribed because not being use to taking drugs it was just too strong for me. It's 300 mgs tid but I only take it twice a day and since it's in capsule form I undo the capsule and dump half of it out and that seems to have helped me tolerate it better and I'm not a zombie all day.

I"m sure if my neuro Knew what I do with them she would have a fit but a girls gotta do what a girls gotta do to survive this monster.

Thanks again,
Kath

deleted_user 12/09/2011

I couldn't take the Neurontin =( Wished I could of at times..I felt terrible and many bad effects from it =( Feel better! Hope it doesn't stick around too long! xo

kathi6635 12/10/2011

Heidi..I had the sty sensation for weeks and it turned out to be optic neuritis...have you ever been checked for that hon?

deleted_user 12/10/2011

Kath,

deleted_user 12/10/2011

Saw the opth twice in 8 months and he said all looks ok. The pain in my left eye was horrendous! And that sensation was so odd. It was there a LONG time, then gone..then back. It's gone for now. I had an episode of double vision once, and swirly lines once. I have floaters a lot. I don't know. I know things can be missed, I read about it all the time. I've also read there can be lesions along the optic nerve that can only been seen with MRI?? Is this true do ya know?? My brain MRI was clear so I've just let it alone for now :\ Thanks so much for the info, I always feel like less of a hypochondriac when I come here =) BIG HUG!!!!

kathi6635 12/10/2011

Heidi I know all about feeling like a hypercondriac lol....My optic nerve is pallar in color and optomologist told me I had recently had optic neuritis that cleared up on its own and the symptoms I was experiencing (double vision, color changes, and blurred vison) should intime get better which they did to a certain degree. I still have them but not as severe.

I also had an MRI and this was missed as my other Neuro I just saw two weeks ago and the Spine specialist agree it is MS and my MS neuro missed something so more MRI's are ordered for Jan 4th. They also told me to get a second opinion and get that MS diagnosis.

I'm suppose to be going to the best there is but he sticks 100% to the McDonald criteria and if you don't have exactly what they call for you don't get a diagnosis.

Six Doctors all say MS, Kath says piss on it I know what I have, I don't need it in writing I just want help to walk again like I use to.
That would be amazing !!!!!

Think if I lose anymore sight in my eye from this pain, I'll take a trip to Urgent Care and see what they can do.

Tons of Hugs
Kath

deleted_user 12/10/2011

How did your Optic neuritis start? You can PM me since this topic doesn't really pertain to the subject if you'd like, Hugs a bunch ~Heidi

mteverest 12/12/2011

Hi Kathi,
I too get the facial sensation/pain on the right side of my face from head to neck only on right side, that is how my attacks are, the last one which was last year lasted about a week or so. Severe skin sensation to a point I couldn't brush my hair or put moisturizer on my face plus all teeth ache on that side with swollen throat .

No, you're not alone as this disease does show up with so many different symptoms. And yes I do feel the weakness as well on my left hand/leg almost everyday on/off.

I hope your feeling better by the time you read this post.

kathi6635 12/12/2011

Mteverest, Thanks so much for your reply. I'm afraid I"m not much better today and I've now been experiencing extreme dizziness again. So I'm calling my neuro instead of my GP because it's affecting my left leg and making walking so much more difficult.

I was awake most of last night with tight bands around my ribs that just wouldn't quit even after taking my gabapentin.

thanks again for your concern and so sorry you have to go through this too.

Wish I had a magic wand to make us all better. Maybe Santa will bring me one even if it works just for xmas it would be so wonderful.

Very gentle HUG to you
Kath

mteverest 12/12/2011

Kath, I am sorry you are not feeling better yet, yes you should call your neuro, and I know you will pass this episode soon.

Are you on any of the MS meds?

A big gentle hug to you too.

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