anyone else have these sx? - Multiple Sclerosis Message Board

JCD1 · 08-01-2006, 12:39 PM

Hi I am a 32 yo female with a 12+ year history of vertigo- not always the spinning but more like a sea sick feeling or feeling as if I am in an elevator while I am sitting still or walking around. At first it came in episodes that lasted anywhere from a few days to a week. That went on for years. I had my second child 10 months ago and two weeks before i delivered i had a flare up that has since lasted to date. It is now a daily thing. I had a mri in Nov of 2005 that showed multiple periventricular white matter lesions in the frontal and parietal lobes. More of them on the right than the left, the largest one measuring 4mm. They were said to be non-specific. They were also "old" as they did not enhance with the contrast. I have balance problem as my sx and no lesions were found in my brainstem or cerebellum. I also had TONS of blood work up (16 viles) and a spinal tap, Evoked potentials and a spinal MRI all of which were normal. They are saying the lesions are due to migraines- I have had a "typical migraine" probably 5 times in my life, but my most common symptom is not pain- it is this "swimming feeling" in my head. My ? is, does anyone else have these symptoms and if so are they on a daily basis? I dont know if I can believe it is migraine if it is happening every day??? not sure. Also, is there any recommendations of good neuro's where i can take my films and tests and get 2nd/3rd opinion? I will travel anywhere and pay cash to see any dr. Please let me know if anyone can help- THANK YOU!!!!

duttin · 08-01-2006, 09:17 PM

I would get a second opinion.You can contact your local MS society and they can give you a list of MS specialist in your area.I've had occasions of vertigo lasting a day or two here or there.And I'm always of balance.

JCD1 · 08-01-2006, 09:45 PM

Thank you- have you been off balance since you were diagnosed or has it gotten worse? do the meds for MS help with these symptoms? Where are your lesions- and what tests did you have to confirm your ms diagnosis. Thank you!!!

duttin · 08-01-2006, 10:39 PM

My first MS attack happened back in 1998 after a tramatic back surgery,after a few test my surgeon told me I had MS.I was 33 and disregarded the diagnosis,my surgeon botched my surgery and I thought he was covering his butt.(lumbar partial spinal lesion and bilateral optical neuritis)

I was rediagnosed in June .

My off balance can be from the MS and 2 failed back surgeries.I have drop foot and where leg braces,doesn't help the balance.I sway back and forth on bad days like a drunken sailor.I have had this for years.

My other symptoms are blurred vision,numbness and tingling in different spots,ringing right ear,electical shocks in feet,buzzing in neck and spine that spreads to limbs,weakness upon movement as in limbs get tired,right leg drag after walking a short distance.Heat intolerance,fatigue,brain fog.

Test----multiple blood test,6 MRI's --2 brain,2 neck,thoracic and lumbar.EEG---sleep deprived(rule out seizures)3 EMG/NCS checking for nerve conduction blocking do to demylination ( rule out myopathy and ALS)I do have lumbar radiculopathy--nerve irritation from previous surgeries.Visual evoked potential,samoto-sensory evoked potentials these test detect lesions MRI's don't pick up.Lumbar puncture--no o-bands , highly elevated myelin basic proteins,demyelination is occuring.

Lesions--detected by MRI---cortical atrophy caused demyelination---lesions in occipital frontal area bilateral(vision is decreasing).Spinal lesions detected by evoked potentials,past optical neuritis,borderline visual evoked potentials.EMG/NCS slowing nerve conduction ,demyelinating cause.Then the LP with elevated myelin basic protein.

A diagnoses of MS,is a diagnoses of excluding all other possibilities.I don't meet the standard criteria (McDonald Criteria)for MS.My panel of Drs are awesome,I have a neurologist,neurosurgeon,electromuscular ,and my GP .I was diagnosed with primary progressive MS.Symptoms lesson but never totally disappear.

I'm currently not on MS (crabs)meds.I have several allergic reactions to meds that I'm still researching the meds.I do take baclofen,zanaflex and quinine for chronic spasticity.I use pain meds on a need basis.

MS is an individual disease with multiple symptoms and not everyone has the same symptoms.Some experience a large variety of them and others just a few.I have to distinguish between my MS and the back problems one feeds off the other.
The road to a diagnosis is bumpy,long and full of test.Try to stay stress free as possible.

JCD1 · 08-02-2006, 08:47 AM

Wow- thank you very much for all of the information. I am still going to seek one more opinion...I have had 2, both say not MS. I just feel horrible a lot of the time and want an answer. Thanks again so much for all of your input.