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Posted 7/22/2008 6:46 PM (GMT 0)
I have not been diagnosed with MS, but I have been having many symptoms consistent with it and my doctor still considered it a strong possibility until she consulted with a neuro late last week and was told the following. I am just wondering if this rings true for those of you who have been diagnosed:

Among many other MS-characteristic symptoms, I have been having severe tingling moving throughout my body, including my face and head (scalp, in ears, down throat, etc.). The neuro told my GP that facial symptoms are not consistent with MS, and that particularly since my brain MRI was clean, it is very unlikely I have MS since I would certainly have lesions on my brain with facial symptoms.

Does this sound consistent with your experience? I wonder because, while I am aware I may have other conditions, one of my fears is that MS will be ruled out too early and that as a result, I may not receive the appropriate treatment as early as otherwise possible.

Thank you in advance.

Posted 7/22/2008 7:12 PM (GMT 0)
Hi there,

I have MS and I don't know about the tingling through your whole body but, I get tingling at my (right above my lips actually) lips.  It feels like a feather or something.  It goes away.  When I was diagnosed my one eye twitched,  noticeably.  I was in the hospital for the battery of tests.  They diagnosed it as MS.  They gave me steroids for 10 days while I was in and shortly after I was out of the hospital (perhaps a couple days) the twitching went away.  Now and then I get a little bit of twitching but, it does not last long.  So what I am trying to tell you is that yes, I get twitching near my eye and at my lipat times.  I don't actually know if it is from MS or maybe when I'm stressed or tired?  I am probably not helping you out with this reply but, if you feel like you are not getting the treatment and tests you want maybe you need to talk to your doctor about it and discuss your options.

Posted 7/22/2008 7:39 PM (GMT 0)
Hey Totem

Yes, as far as i'm aware ms can affect u'r face. Consider this....if it's ms it's in u'r central nervous system...that affects u'r ENTIRE body. There is no part of u'r body that the cns does not have a part in functioning. If it's not ms...maybe peripheral neuropathy (outside u'r cns)....then u can still feel the effects in u'r face. It would then, tho, depend on the nerves affected. I could be way off here, but first it's common sense to suppose that the cns affects u'r face as well as the rest of u'r body, and second it is medical fact that there are nerves in u'r face and scalp.

I don't have ms, but i've always had twitching and jerking in my face and jaw. I guess that goes to show...with and without ms (20yearsandcounting) u can have this prob. Maybe consult with a second neuro???

Welcome to the board Totem! I'm so sorry for all u'r going thru, but glad u' here with us.
Posted 7/22/2008 7:47 PM (GMT 0)
Thank you for your replies. I hope for others. I asked because it did not make sense to me that somehow the face would be magically excluded from MS symptoms. It sounds like that is being affirmed here.

I guess it might potentially make more sense, however, that facial symptoms might not be possible with a clean brain MRI - which was the second part of the argument this neuro gave my doctor?? I don't know if that makes any sense to any of the rest of you.

I understand that my brain MRI came back clean, but due to the nature of the symptoms I am having, I have asked for either a spine MRI or a lumbar puncture. I have been told no, and what I described in my first post was the reasoning I was given. I am not satisfied, which is why I am seeking other input. Thank you again.
Posted 7/22/2008 7:54 PM (GMT 0)
Hey Totem

As i mentioned above...i dont' have ms and i have many clean mri's...brain with and without contrast. I hope to see others here post to u as per their experiences, but as i'm aware, u can have ms and not have the lesions show up on mri early in the disease. This could mean that u do have lesions, but they aren't showing up yet, or can mean that u don't have lesions and hopefully don't have ms.

I'd keep pushing for the lp and second set of mri's, but maybe don't push so hard for the mri's just yet. Give u'rself some time between the first mri and the next to see if anything new shows up. Remember, if it's ms it WILL show up in time...but don't get impatient...it can take a LONG time. Hang in there friend.
Posted 7/22/2008 9:24 PM (GMT 0)
I agree with Rhonda about seeking out a 2nd opinion. If you need a referral from the doctor you see now and he won't give you one, I would suggest you seek out another doctor. (Even if this is the only reason you go to another doctor). Another doctor may agree with you on further testing. That would put your mind at ease if they would do further testing. I have found that some docor's are quicker to agree to test for things than others. Good Luck kiddo. Nice to have you here.
Posted 7/23/2008 1:03 AM (GMT 0)
Hi and welcome I do have ms and after the mri's i would get a sensation that my right cheek just below my ear was bleeding except it was cold.It came and went.I had/have the eye jerks I think it can strike anywhere. I actually had my face pull and my hand point straight out that happened for awhile when I had my shoes off my foot would point too we timed it it happened every 12 min.s for 8 seconds.Very annoying so I would say yes your face is included....I always thought my left side was my ms side but my right side seems to be weaker now..Good luck to you and will be seeing you again.pokey79
Posted 7/23/2008 11:12 PM (GMT 0)
Hi Totem, I think the neuro is working off of less info than he should have for making a decisive statement about MS for you. Most neuros will say no MS based on no lesions but most neuros will also see you and conduct full neuro exams to consider that w/ the MRI's. I have been the whole gamut with my neuro over the past couple years now. My MRI's are clean and my LP showed no O-bands... but all my neuro checks show issues... multiple numb spots, poor reflexes, lousy nerve conduction test, vertigo, imbalance, poor gait, etc.. and then Optic Neuritis... thus my dx. So really I do think you should pursue a second opinion or get in front of the other neuro.

My facial symptoms run with upper right quadrant numb, right eye optic neuritis, right eye tics, lips numb, l'hermitte's twinges up right side of neck to head (electric shock feeling), blurry vision etc... so there are lots of facial issues that can be MS related. These are combined with a lot of lower leg issues.

I'm really surprised a neuro would offer an opinion without seeing you personally. It's kind of unprofessional to me. Try to find one who specializes in MS.

Posted 7/24/2008 12:27 AM (GMT 0)
I second that!!! Don't let this 'phone dx' dictate to u what to believe. A good neuro will want to see u and do multiple tests in office. I understand that pcp's will consult with specialists and get an opinion as to whether or not u need to be referred, but an outright dx or non-dx is a bit off the cuff and very unusual. Maybe it's ms and maybe it's not, but u should be seen in person by a neuro...this one or another.
Posted 7/26/2008 10:53 PM (GMT 0)
Thank you again for all your replies. I greatly appreciate your input and your personal stories. The neuro my GP consulted is supposed to be the MS specialist at the medical school in our decent-sized metropolitan area, so it is disquieting to read some of this information. I am not terribly surprised, though, given that I had questioned his opinion myself. The good news is that I have been referred to a neuro (thank goodness a different one!), though my appointment is not for two months. I will continue to lobby for a lumbar puncture, though I don't think I'll be getting one before this neuro appointment. My GP's mind is pretty closed on the matter.

For the record, my symptoms (which were mostly principally tingling, brain fog, and vertigo) have greatly improved with the exception of the vertigo/balance/dizziness. I still have tingling, but it's calmed down amazingly and the brain fog is almost gone. I guess we'll just see.

Thank you again. Take care all.
Posted 7/27/2008 12:12 AM (GMT 0)
Hey Totem

Keep pushing for that lp. U'r doc may finally give in if he/she see's how certain u are about wanting it. NOW....given that u'r requesting it, u'r ins may not pay for it if the doc presents it as a patient request in u'r record. If u feel u'r new neuro may be likely to agree with u on this lp, then u may want to just wait. Two months seems like a long time, but before u know it'll be here. I should also tell u that that length of wait for an appt with a specialist is not unusual. Hang on friend and u'll get there.
Posted 7/27/2008 12:57 PM (GMT 0)
for the most if i do get tingling it seems very direct(not the entire body). Hands have been the common place for tingling but this is not something I experience often. Vertigo is something I do experience a lot. I have mainly narrowed that down to waking up or overheating. I hope that you find the "root" of your symptoms.
Posted 8/1/2008 4:30 AM (GMT 0)
Hey Totem, this is one time, I kinda differ with Rhonda on pushing for that LP...  I'd wait for the neuro appt for that LP... for one thing, you need a neuro to do it right, or someone very qualified (GP's don't do these things) and for another, whoever's doing it has to order the right tests and cultures and get enough tubes or you're gonna go thru that LP again when the neuro gets ahold of ya. My neuro did everything else first. He has a policy on not invading the body til he has too, reduce risks of infection etc... he likes to see all the other tests first... MRI's, evoked Potentials, labs (about 12 tubes of blood to draw, fun time) and keep checking the neuro exams over the months as he schedules visits and listen to the litany of symptoms... and believe me stuff kept happening.

Let the neuro walk thru with ya, but keep a journal now of the symptoms, their severity, when they happen, how long they last, if they go away, if they impair your normal living skills, etc... don't ignore little eye ticks, blurry vision, migraines, muscle spasms, tremors, digestive issues, etc... keep notes and let him know about it. With all the info he can give you the right dx much better and get things settled much better.

My road to my dx took over 12 yrs but I didn't get to the neuro until the last 2 yrs... GP's kept poo-pooing the miscellaneous stuff off (you're older, you're overweight, you're hypothyroid, you're stressed out) til I experienced a paralysis of my right hand, then that got her attention fast. And her suspicions were right. But until the neuro did his job, we didn't have a dx.

So long story short, (sorry for being so windy), go in open minded, don't tell him what you want to hear, make him work for you, make him figure it out and YOU be the patient. I did that to mine on purpose and told him so.( and he knows I know medical pretty good).. it wasn't til he told me what he decided it was that I finally started hunting for info and ways to deal with it.

 

Posted 8/7/2008 3:12 AM (GMT 0)
I don't experience facial pain, but I do have episodes where my left cheek under my eye has a deep itching feeling. Anyone else experience this?
Posted 8/9/2008 2:55 AM (GMT 0)
Not like that on my face... I have that deep itch in the middle of my back on the left side... same exact spot every day. It's crazy...
Posted 8/13/2008 3:48 AM (GMT 0)
I get facial pain and itching and tingling. Spent a lot of time at the dentist and the sinus doctor before I figured out it was the MS. Sometimes I scratch my cheek to the point of getting dermatitis...frustrating. Tried a med for trigeminal nerve pain but it knocked me out. So I just manage, easier knowing it is just freaked out nerves. Biofeedback for pain has helped me with this somewhat. Willow
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