No diagnosis - anyone experience this symptom?

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New Member

Date Joined Mar 2007
Total Posts : 10
   Posted 3/31/2007 9:41 PM (GMT -6)   
I've been experiencing various possible MS symptoms off and on for several months now, have seen pcp, but awaiting visit to first neuro appt.  Had CT, which was negative, PCP wouldn't order MRI, insurance issues.  Some previous symptoms I've experienced and some of which I continue to experience are poor balance (including falls - still experiencing), blurring vision in one eye that is very transient, it occurs, lasts a few minutes, then goes away, constant daily headaches (put on topamax, seems to be controlling for now), memory loss (even before the topamax), arms and legs quick to "fall asleep" (pins and needles), recently, sudden left arm weakness that actually took me by surprise - attempted to pick up my school bag and just could not lift it. I drop things constantly - like my fingers just lose grip or the sensation goes away.  I have a lot of dizziness, a lot of fatique, my hands (though usually just one side, usually the left) shake when doing something requiring fine movement, my sleep is all messed up, can be exhausted and can't sleep, then feel rested and fall asleep sitting up, I mood swing like you would not believe and it can't always be PMS and now, I have a new little problem that I don't know if it can be associated with MS or not, but it's driving me insane.
For about 3 days now, or maybe even 4 - the right side of my lips - mostly the top, but I'd have to say both top and bottom, have had this numb almost tingling sensation - it feels heavy and empty - but if I touch there, I can definitly feel it - so it's not "numb" per say.  I've applied blistix to see if I could "revive" the sensation, and I can feel the burn from the medicated ointment, but it still feels wierd and heavy and numb and then always sort of a very faint tingling.  It seems to stay only on the right side of my lips.  Today, I noticed that on my right hand, the tip of my index finger went numb also, and on my left foot, my big toe went numb.  It's a bizarre feeling, and frustrating too.
I'm trying not to be a hypochondriac, but there has been something "not right" with me for years, and it's getting worse.  I wish the Dr.'s would listen, and i"m hoping that maybe this visit to the neuro doc might change all that.  I certainly don't want to be diagnosed with MS, but it would be nice to finally know what's wrong with me.
Let me know what you think.

Regular Member

Date Joined Feb 2007
Total Posts : 161
   Posted 3/31/2007 9:53 PM (GMT -6)   
Hi Stacie,

glad that you've found this site! There are quite a few of us here who are not diagnosed, but are experiencing many of the same symptoms that you are. They certainly sound like MS type symptoms.....but as others on here will tell you, many conditions have very similar symptoms.

I understand your frustration at needing answers....and the feeling of being a hypochondriac.....I know exactly what you mean! You know there is something going on, and I'm sure that one day the doctors will figure it out too. In the meantime people have told me to keep a diary with all of the symptoms etc....what you're feeling, when and what may trigger the symptoms. Then you have a good record to show when you see a specialist.

For now, feel free to come here and tell us about how you're feeling. It certainly sounds like you're having a rough time, and it can help to chat to others in the same boat.

Good luck with the neuro!

Let us know how you get on!


Forum Moderator

Date Joined Jan 2007
Total Posts : 3570
   Posted 4/1/2007 10:48 AM (GMT -6)   

Hi Stacie,

I am so sorry you are not feeling well.  I hope you get some answers and treatment real soon.  I had a CT scan it came back normal but when I had an MRI it showed lesions.  I don't understand the difference but the MRI clearly showed more details.  I have since had 4 more MRIs and that is what the doctors used to locate and monitor lesions.  CT scan is just not detailed enough.  Good luck.  I hope you can get insurance to cover this.  Work on your neuro on this.

Love and prayers,


diagnosed: MS  July 2006
Treatment: copaxone, prayer, laughter, and positive thinking

Veteran Member

Date Joined Mar 2006
Total Posts : 2146
   Posted 4/1/2007 11:53 AM (GMT -6)   
Hey Stacie

Welcome to the board! I see Kas and Gretchen have done a great job telling u about some important things involved in being ready for u'r neuro appt. Asking for and getting an MRI could be a major obsticle if u'r ins isn't willing to provide coverage, but if u'r able to, push for it and for copies of the film and report. Also, as Kas said, keep a journal or diary of u'r symptoms...up to now and forward as much as u can. List the symptom, how it feels to u and how long it lasts as well as anything u can determine that may have triggered it. i.e heat It will be very important to u'r neuro to know this type of info.

Many of u'r symptoms do sound like ms, but as Kas also said, they could be a number of other things. U may want to google 'ms mimics' or 'ms differential diagnosis' and just take a look at any other possibilities. That kind of info may help u decide if u've overlooked something that needs attention at u'r neuro appt as well as if u should be looking at other possible health issues.

Please do let us know how u'r doing and how the appt goes. We have a great community here with wonderful people who will help u all they can. Please feel free to ask any questions u have. We have live chats on Monday's at 6:00 pm (cst) each week. We'd love to see u join us! Again, welcome to the board! :)
Co-Moderator, MS Forum
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*

Regular Member

Date Joined Jun 2006
Total Posts : 329
   Posted 4/1/2007 12:11 PM (GMT -6)   
Hi Stacie -

Welcome! I too am not dx'd as of yet. Waiting for my 2nd opinion w/MS specialist in May. I do experience the lip numbness as well, but what accompanies mine is gum numbness too. Fun thing is I'm getting used to it and don't realize it's numb again and go to take a drink and dribble down my shirt. ;o)

It usually feels just like I'm starting to come off the novacane shots that the dentist uses, not completely no feeling, but the balloon and tinglely feeling. Only the right side right now experiences these sensations or numbness if you will. I have quite a few lesions some on the right side of the brain, some more toward the back side and the most on the left side. I'm just associating with the reason I have more issues with my right side is because I have more lesions on the left side of the brain. But that's just my own self dx, the lip/gum stuff has just started in the last 2 months for me and since I already have my appt for the 2nd opinion, I'm just writing it all down on my symptom list for that visit and not calling my neuro with the info anymore.

As KAS & Gretchen both mentioned the MRI is a more precise tool for finding lesions that possibly could dx for MS, if your insurance will not pay for it ask your dr what dx he/she is using. OR if it is a test that your insurance just will not pay for, maybe setup payment arrangements for the test, because is is quite expensive. You will need something like that type of test now for a dx IF you have not had a definate exacerbation that required medical treatment.

I hope you don't have the lesions I have and this is possibly something else. Good luck and keep us all posted on your neuro visit.
I just reread your post and realized that you are on Topamax, I too was on Topamax and it made my usual symptoms 10 times worse.  I was only on 75mg, suppose to be on 100mg, but never got there.  I was on it for minor seizure activity that my neuro thought I was having when I thought they were temors and I had a history of a few migraines.  It helped some with the tremors, but I still experienced them and it was wonderful for headaches.  I didn't have any type of headache for the 3 mos I was on it and I usually get a headache a couple times a week (just headache, not migraine).  I took myself off it 2 mos ago and have more tremors but I can handle those more than the frequent long lasting numbness I was experiencing with the Topamax.  I know MANY people can handle the Topamax side effects with no issues at all, I hope you are one of those people since it does work for the headaches.

I not only use all the brains that I have, but all that I can borrow.
  Author: Woodrow Wilson (1856-1924), 28th U.S. President

Post Edited (Denda) : 4/1/2007 11:24:42 AM (GMT-6)

New Member

Date Joined Mar 2007
Total Posts : 10
   Posted 4/4/2007 3:49 AM (GMT -6)   
Thank you everyone for your info and feedback.  I see regular MD on Thursday and I'm sure he won't be of any further help, but I'll play the game and take each step.  Neuro appt. in early May - I hope to know at least a little more by then.  At least I sort of have feeling back to my lips now - in fact, I can feel quiet clearly where I bit into it the other day - OUCH! :)
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