Need Help

[mkkga05]

Hi group,
I am a 30 year old female who has a whole range of neurological stuff going on.

I have had 3 distinct episodes in August 2005, August 2007 and currently in another exacerbation. All have similar characteristics: begins with a migraine that is not able to be controlled with medications, leg drop, extreme fatigue, balance problems (went to a balance center in 2007), frequent urination, nighttime urination, pain in my neck and shoulder, fingers feel like they are on fire, tingling and numbness in left foot, overall weakness, extreme itchy spots for no reason, trouble concentrating and it feels like I am in a dream most of the time (even before trying medications) and muscle spasms. My migraine this time includes auras instead of sensitivity to light. I have had 6 migraines since July 9th and have been unable to work.

In 2005 I had 2 blood clots in my brain, which presented with seizures, due to a genetic blood clotting condition (still on blood thinners) and have had trouble with migraine headaches spikes and daily headaches ever since. I am a very active adult and healthy otherwise. I am an assistant manager at a large retail store and manage 60+ people. High stress position.

Current MRI's of the cervical spine show signal abnormalities at C5-6 leval not changed since 2008. 2008 scans showed T2 signal abnormalities on C2-3, C5-6 and C6-7. My brain MRI's show no lesions. I have tested negative for Lymes disease, B12 deficiency, Iron Deficiency and do not fit for fibromyalgia or other mimics of MS I have found.

My mom, maternal grandmother, paternal aunt and cousin all have MS and to us my symptoms and exacerbations mimic some we have seen with them. Neurologist, however, says this is not MS and everything can be explained by the headache.

I am thinking about asking my neurologist for a MRI with contrast and VEP tests. Also would like to talk about running with a week of steroids to see if that helps. To do a spinal tap with me is complicated due to the blood thinners.

Please help me to see what you think about my symptoms and any other tests I should request. I am seeing my neurologist on Tuesday this week.

Thank you for your help,
Mandy

[Camsue]

Hi Mandy

wow..you sound like an expert in all you've experienced...I hope you're able to get some clear answers with your next visit..Your sxs sound different than mine, but most people with MS have different sxs and yet some the same.

Take care and let us know what you find out

[JerryD]

You do, obviously, know what you are dealing with. You didn't tell us your vitamin D numbers. And the medical literature is explaining its importance, more and more. I say you get every diagnostic test that is possible. Soem test the saliva. I wouldn't do an LP, with the existence of all of the other tests available Good luck.

[Redwings]

Hi Mandy:
You obviously have a complicated case. You have a combination of things going on, some that aren't typical of MS, some that could be MS but could be several other things, and some that are characteristic of MS.

You haven't said how many neurologists you've seen, but it sounds like it might be time to change to another one. 1) Your neuro has dismissed MS as a possibility without working you up thoroughly (no evoked potentials, especially knowing that an LP will be difficult). 2) Migraines aren't known to cause multiple spinal cord abnormalities, and the cord abnormalities haven't been explained. 3) You have a strong family history of MS that can't be explained away by "headaches."

Rather than trying to cajole and retrain your neurologist, it may be better to just switch to a neuro who doesn't need to be cajoled and retrained.

You didn't say what your neuro's qualifications and area of specialty are, but folks with complicated cases have better odds (not a guarantee) of getting a correct diagnosis from practitioners who regularly see complicated and atypical cases. That means going to as high a level of multidisciplinary clinic as you can afford and physically get to, which is usually a university medical center or at least one with a medical school. Some of them -- like Johns Hopkins, the Mayo Clinic and Cleveland Clinic -- have world-wide reputations for excellence. It's likely that your local "insurance" neuro doesn't. Even if the neuro you're seeing is at a university medical center, it sounds like you still need to move on.

As far as steroids, you should know what you're asking for and why. If you want to treat your migraines, you can do your own research, but there isn't enough medical evidence in the literature to support their use to treat acute migraines. Migraines aren't primarily inflammatory, so steroids are of limited help.

Beyond that, steroids to treat what?

Steroids can be used as a shotgun approach to evaluating inflammation, but they're a slippery slope. If steroids cause some kind of improvement in symptoms, the cause remains unidentified, as does a treatment, so their helpfulness is limited.

And you mentioned asking for a week of steroids. Why a week? At what dose? And based on what? If you're going to ask your neuro for steroids, you won't have any credibility without a solid rationale and plan to support your request.

If you want to keep trying to get blood from a turnip, you can press your neuro for more testing, including new MRIs, a VEP and other evoked potentials. You said that you "don't fit other mimics of MS," but you didn't specify whether you've had a full rheumatology workup. (You don't need "every diagnostic test that is possible." You need only the ones that apply to your differential diagnosis.)

But even after you've had those tests, is your current neurologist really the one you want to interpret them and continue managing your case?

[mkkga05]

Thank you

Thank you all for your responses. After looking over all the evidence and tests I have had, I have had my vitamin D levels checked and they are normal, I have had a full rheumatology test, lymes test, B-vitamin levels etc. With the episode in 2007 I was sent to a Dizziness and Balance clinic which helped dramatically.

My neurologist is one of the top in the state specializing in headaches and ms. Luckily I am in Minnesota and can go to the Mayo clinic as a resort.

I plan on asking for a referral today if my neurologist does not have answers and a plan.

I will update you after the appointment today!
Thank you all
Mandy

[gomer]

Good luck with your apt today....

Best wishes & hope you at least get some direction.

Gomer Sir Falls-a-lot