Don't know what to think

[Melissa072]

Hi ,
Have been off for a while, couldn't log in to site for some reason.
Anyway asking question again, went to neur few weeks ago for visit, never had the repeat mri, referral was out of date so they cancelled on me.
My neuro wants me to have 6 monthly mri's.
I would just like someones opinion on what he told me this visit.
He told me clear mri, and negative L.P. does not rule out ms for me.
If I was to go and have a evoked ............. and it was normal it wouldn't make ms more unlikely either.
He told me there is a new drug on the marked soon which will stop 70 - 75% of attacks and some people on it may never go into secondary progressive ms.
Because I still have symptons he told me there caused either by ms or my high levels thyroid antibodies.
If I do have ms then I have had it for at least 3-4 years. I have had 3 clear mris so far and a negative L.P.
I have no fatigue, I am quite the opposite I am full of beans.
But for the last 14 months under both feet have felt numbish, as well as my face, groin tingling remains, hands and feet tingling return in heat, back burns when I'm moving about, dizziness remains, and in mornings now for last couple months I awake to sore hands and left ring finger feels like I have a rubber band around end of it until I shake it and it goes. All my symptons are ms ones, if neuro told me 12 months ago I had ms I think I would have jumped off a cliff, now I know this sounds terrible but I don't care I just want answers.
If I had ms wouldn't something have shown up on mri, wouldn;t I be fatigued.
I am going for repeat mri and evoked .................   at end of year before going to see neuro again.......
Any advice appreciated...........

[Melissa072]

Yes the ankle numbness is both ankles and at the backs of both ankles.
I also have weird feeling up both legs and arms.
It's more noticable when I shave.
And if I run my finger over the top of my foot, it tingles, sort of vibrates under where I stroke if that makes sense.

[6-paq]

Is your ankle numbness on the right behind your ankles?  I get some buzzing right behind mine on-and-off.

I also have had on-and-off dizziness for a couple of years.  It's mild as well and is my most annoying symptom too!  My neuro sent me for a VNG which can help determine if the dizziness has a central nervous system or peripheral cause.   Has this test been mentioned by your docs at all?  

I've been told my dizziness is either inner ear or TMJ or my SCM muscle or ???  I have had some physical therapy for it.  That has helped some, but it still comes and goes.  I just count my blessings that I never get dizzy when sitting or laying down, so I haven't had any issues driving.

I'm sorry about the facial pain.  Hope those answers come quickly for you.

Pat :)

[Melissa072]

Yes it sure is frustrating, I just want answers, like everyone else out there.
I have had brain and whole spine done, twice, and both times normal.
I have also been told that a clear mri and negative L.P. makes ms more unlikely, and a neuro told me I could almost rule ms out by 100%.
But then you hear a lot of women particulary on this site having normal tests then going on to have lesions show up on mri.
The new drug my neuro spoke about starts with a 'T' I think, adn he told me it can stop a lot of people going into secondary progressive, I would like to find out more about that.
Both my feet underneath tingle and buzz and my ankles both have the numbish feel, and walking on grass feels weird, but the most annoying sympton is the dizziness, its only very mild but there 24/7 and I've had it over a year now.
I do have carpel tunnel in my left hand but I also get the tingling in my right hand, and it hasn't got carpel tunnel, on my mri I have early OA (osteoarthritus) I think they said, but I also have suffered with bilateral face pain too, on several occasions, and no medication took away the pain last time it came.   Thanks for posting

[6-paq]

I don't know anything about the thyroid antibodies and symptoms of that, but just wanted to comment about some of the symptoms you've been having.

My LP was negative.  My brain MRI wasn't.  I'm still in limbo.  Neuro suspects MS.  I don't have fatigue either, and I don't have heat sensitivity.   My neuro also told me that a negative LP doesn't rule out MS.   Neither does a stable brain MRI and mine has been stable for the past year.    My evoked potentials were normal, but that doesn't rule out MS either, according to what I was told.

So, your neuro sounds like he's on the same page as mine.    I haven't been told about the upcoming drug, but I do know there are some good prospects in clinical trials right now.  I'm just hoping that an oral drug is on the market by the time I get a Dx.  ;-)

As far as your feet, is your numbness just on the bottom of both feet?  If so, I have similar issues with tingling/buzzing on the bottom of both feet.   I have issues with my L4/L5 and L5/S1 discs.  I have been told by my Physiatrist (and my physical therapist) that my issues with the bottom of my feet are caused by the issues in my lower spine and I was recently diagnosed with lumbar radiculopathy.  Do you have any problems with your lumbar spine?  If so, that could be contributing to the symptoms in your feet.

The sore hands and problems with your ring finger in the morning sounds suspicious for ulnar nerve compression.  I also have those issues in the morning.   If shaking your hands makes them feel back to normal, that could suggest a compression of the ulnar nerve or carpal tunnel.   Have you had a cervical spine MRI?   You may either have lesions in your cervical spine or a disc issues that could be creating those symptoms in your hand as well.

I think it's a good idea to repeat the MRI and evoked potentials.  If you have MS, it will show up eventually.  Getting 6-month MRIs is good.  

I know how frustrating it is to wait for an answer.    Having more than one thing creating symptoms sure does muddy up the water.  

Take care, Pat :-)