Could this be MS

[BethLo]

2 months ago I had an acute onset of imbalance and nystagmus with left ear pressure, no pain.  I had not been ill recently with a sinus infection or ear infection. I am previously healthy, active 34 year female.   It got progressively worse to the point that I was unable to walk without assistance, I was falling to the left, and the nystagmus was so terrible that I was constantly nauseated. I had a CT scan without contrast (allergy) because of family hx of aneurysm.  The CT showed multiple lesions consistent with demyelinating disease,  an MRI was ordered and showed

Multiple small foci of abnormal signal intensity within the cerebral white matter and left middle peduncle, findings in this age group are suggestive of demyelinating disease.  

I was admitted to the hospital and treated for complex migraine-I didn't have a migraine, I had at most a 3/10 headache from nystagmus for 4 days. I had a LP which was negative for everything, At this point I informed the neuro team that I had been having pins and needles feeling in my arms and legs that I thought was just from my Topamax I had that happen when I first started taking it, but not since. They tested me for neurosyphilis, but didn't think to test for things like lyme disease, autoimmune diseases etc.  They packed me full of steroids before they even drew baseline labs. The final discharge diagnosis was vestibular neuritis.  I still could not walk safely with a walker, so I was discharged to inpatient rehab for 2.5 weeks.  I saw and ENT, placed on 10 day burst of prednisone, did VOR and PT/OT every day and got stable enough to go home.  

Met with ENT again about  month after initial attack, was having 3 days of facial pain on both sides though not at the same time. He had sent me to audiologist, everything was fine there, I still had nystagmus, he tells me I don't have vestibular neuritis, I may have but not any more, I ask him about the continued balance problems, ataxia, facial pain, he says that they may be related to my migraines.

I meet with Neurology about 1 month later I have been in PT 2x week during this time and physical therapist is concerned that I am getting weaker. the pins and needles feeling in my arms and legs is present every day and moves around, it may be in my heel in the morning and then in the afternoon in the other leg from my knee down. Neurologist told me that the lesions on the MRI are from migraines, that 30% of all migraine pts have them.  I asked him why they didn't how up 18 months ago on a previous study. He couldn't answer me and ordered 2nd MRI.  included spinal MRI.  
The read for the new MRI is: as noted on previous MRI there are multiple areas of hyper intensities. Meets Mcdonald criteria for dissemination in space.
So now I am waiting to go to Barrows Neuro Clinic because I am in AZ and I have been told to go thereby co-workers who are from AZ.  I am still using a walker I look like a 2 year old trying walk, my coordination is shot.
I am so ready to know what this is and have someone do something.  PT isn't enough.  

[aspen2]

Very good.  You will definitely be more likely to get in with a referral like that :-).

[BethLo]

Finally got the appointment. Barrows reviewed my records and is sending me to the movement disorders clinic because of the ataxia for 3 months.
I have a feeling that once I get in there and start telling them all the symptoms I have been having they will send me to the MS clinic for a second opinion.

[aspen2]

My mri also met McDonald Criteria for dessimation in space, however the first ms specialist I saw said "No way it's ms" due to the lesions being small, and also inactive.  I've had THREE dx of migraine (despite not having had headaches or migraine :-P) and was told my right side weakness, loss of taste, bladder issues, complete loss of balance for three weeks and trigeminal neuralgia, all at different times, were auras.

The process is exhausting :-P.  It took a well-timed visit to a second (last??? I hope) ms clinic WHILE being in the early stages of an "episode" where the  neurologist actually looked at my history, got hard neuro exam results, and has committed to figuring out what is going on.  He still may not end up with answers, but at least this time I was not completely discounted.

So, here with you in limbo land.  And I want to encourage you that even if ONE ms specialist agrees with the migraine dx ... or at least refuses to entertain the possibility of ms ... go for a second opinion.

[BethLo]

Thanks for the response. On the first MRI and admission they told me MS wasn't a possible diagnosis because none of the lesions were active and my LP was negative. When I went back for my follow up 2 months later he ignored everything saying I looked a lot better.

[supermum_ms]

HI and welcome to our little MS community,

To answer your heading question "Could this be MS" then i would honestly have to say, that if your MRI's are stating that you have met the Mcdonald criteria for MS, then the answer would have to be 'yes' it definitely 'could' be MS.

I would highly recommend that you find a neurologist that specialises in MS!!

Whilst it is true that migraine can produce brain lesions, migraine does NOT cause 'demyelinating lesions' and migraine does NOT usually produce lesions that meet the MS MRI diagnostic "location" criteria, as well as fulfilling the "dissemination in space" aspect of the MS diagnostic criteria.  AND on top of the MRI evidence, your clinical signs (sx's) are more consistent with an MS
relapse than with migraine..........Migraine doesn't make sense to me!

I'm kind of shocked actually, you've gone through a lot and your neuro isn't even considering the MRI as even being highly suggestive evidence of MS, in a 34 yr old female to. Please get assessed by an MS specialist because there has to be a more logical explanation than migraine and from what you've mentioned MS would (imho) have to be a possibility, so getting assessed by a neuro who would include all the facts, is in your best interest.

HUGS............JJ