Not Sure What to Think!

[momto3girls]

Hello!

On Jan.4 of this year I experienced a migraine headache with aura. Never had a migraine before. After that h/a I began experiencing left arm and leg numbness and tingling, prickly feelings. Right eye vision changes and some right facial numbness. Bone pain as well. The symptoms would come and go. Most days I would wake up feeling good but the symptoms would increase as the day went on.

Went to see my pcp on 1/17. Had an MRI/MRA that same day which should two areas of demyelination. Followed up with a neurologist on 1/26.

Had another MRI (c-spine this time), blood work, LP and VEP done. MRI normal, VEP normal, all labs normal except for a low Vit D level. LP results pending. Haven't had any other headaches since that first one on the 4th.

Neurologist has given me two scenarios. Early MS (original brain MRI with the areas of demyelination were so small and not in the right place to be causing the left sided issues) or complex migraine complicated by vit D deficiency. We are just waiting for the LP results.

Regardless of the LP results my neuro wants to rescan me in 3 months to see if there are any changes.

I am so confused! I feel the same symptoms as I did a week ago. Has anyone had similar experiences early on in their disease journey? Could this all really be cured by vitamin supplication? I am on pins and needles waiting for the LP results.

[chalknpens]

In my case (and we are all different) headaches were among my first symptoms ... very little "ache" but distinct "aura" that eliminate one side of my vision, in both eyes. It happened most often if I was in an overheated room, on a humid, or sunny day while hanging whites outside to dry.

Whether headaches cause lesions or lesions cause headaches, I don't know ... but there is a relationship there.

Vitamin D: yes, a low level of D can cause fatigue, which can cause cognitive changes itself. When I had it tested, it was in single digits; my doctor immediately put me on a high dose for one week, and then a moderate dose from then on. I believe it has improved both my fatigue levels and my cognitive levels. It has not improved my memory, unfortunately. I guess that short term ability is gone. I can have a conversation and not remember it five minutes later.

I'm glad you're doctor is considering Vitamin D levels. B12 is also one to test and watch.

Wishing you well!

Terry

[0485c10]

If you go to my home page i have links to articles i found interesting or where topics on the message board that i thought might be interesting to others..

the ones that make me think of your situation...on 12/15/2011 there were many articles about ms and vitamion d defficiency & one blog that reported that scotland, the country that has the highest rate of MS, is attempting to supplement their food supply with vitamin d to see if that will bring the rate of MS down in scottland.

its interesting, that a whole country is trying this, we will have to see if in 20 years the rate of MS has come down in scottland? like we suppliment the water supply with fluoride that has decreased dental decay. One of the benefits to being a globally connected world now, we will gain information from their efforts.

and then on 12/17/2011 Diagnosing MS the road from signs & symptoms to certainty. where a doc writes mri's being done for headaches are finding ms lesions so often perhaps headaches need to be included as an initial symptom of MS.

also on 12/17/2011 is a link to the 2009 differential diagnosing procedure for MS...its a tough read but in it it says that with symptoms and any abnormality on the MS there is a 90% chance it will evolve into definite MS. i think without any abnormalities on the MRI, but only symptoms there is a 40-60% chance it will evolve into definite ms. i forget the exact % when there are no abnormalities on the mri.

if the spinal tap is negative means absolutely nothing , if positive it increase the chance it will develop into definite MS by about 5%--the doc will add all the probabilities to arrive at a final diagnosis that it is most probable cause the symptoms.

MS diagnosis goes like this....
Possible MS->Probable MS -> Definite MS.

Probable ms occurs when a CIS-clinically isolated symptom highly likely to have been caused by MS occurs.

Definite MS the definition of MS has been fullfilled. Normally determined with MRI consistent with: at least 2 episodes occuring in at least 2 areas of the CNS systom.(which is the definition of MS)

It sounds like your at the Possible MS stage as your CIS is not consistent with being caused MS on the MRI--


Another site on my homepage that you might find interesting is right at the top in "How does MS do its damage? in this website you can go to a page of famous people with MS--select that page at the top. if you scroll down to the very end(N.B) it has 2 people who had symptoms & were tested for MS but it never evolved into MS---they are Michael Crichton & Ozzie Osbourne--

Your doc is taking a very responsible watchful monitoring stance--it may evolve into MS and that's why he is advising future MRI's. sometime it takes a while for MS to become visible enough for a definite diagnosis.

[momto3girls]

Thanks for the replies. I really appreciate it.

[Lexie]

Thanks for the replies. I really appreciate it.

The way you described is the exact way I feel today! I have always had headaches for years but dr says they are not migraine headaches. I think mine are due to stress, anxiety and work. Think if I could stay home I could manage my life much better which would include getting the rest I need. I only have until July 1 of 2013 to retire. Trying to hang in there!!!!

[momto3girls]

Well I had my follow up with my neuro. Can't officially call this MS yet based on my negative VEP and LP. Will rescan me in 4 months to check on my lesions. I have two lesions right now. One is really small but the other is peri-ventricular and looks "MS-ish" and not so typical of migraines. He'll treat my new migraine situation with gabapentin and a prednisone series.

I feel awful. My left arm and leg continues to be all prickly feeling and I have been having increased bone type pain. I feel like I am in a fog and can't think clearly. I pray this is all from the migraines but I hope if it isn't I won't be in limbo for too long.

[jumpinjiminy]

Hi momto3girls. I had my first migraine with aura two or three weeks before the first obvious neurological event kicked off this whole process. No lesions showed up on my MRI, despite a history bad headaches that came in cycles. Complex migraine is my formal diagnosis, the last I heard.

I've had only one other episode of the typical migraine aura. Interestingly enough, it was almost exactly one year to the date of the first one. It also wasn't followed by a headache or a flare up, thank goodness.

Good luck on your journey.

[momto3girls]

Hi momto3girls. I had my first migraine with aura two or three weeks before the first obvious neurological event kicked off this whole process. No lesions showed up on my MRI, despite a history bad headaches that came in cycles. Complex migraine is my formal diagnosis, the last I heard.

I've had only one other episode of the typical migraine aura. Interestingly enough, it was almost exactly one year to the date of the first one. It also wasn't followed by a headache or a flare up, thank goodness.

Good luck on your journey.

Thanks! My working diagnosis is complex migraines as well. I've had two pretty bad ones since 1/4. Just have to keep an eye on those lesions and see if things change. The wait and see thing is hard to swallow.