Neurologist says likely MS - Questions

[jesski]

Hello, this is my first time to this board. I am a 38 year old female and have been on this strange odyssey to figure out what is wrong with me for a long time, but specifically after recent fairly severe symptoms starting in March. I saw an MS specializing neurologist today, and he believes I have MS. He ordered a bunch of tests to rule out other things, as well as a lumbar puncture (set for Monday), a cervical and thoracic spine MRI and chest CT (Saturday). Plus, tons of blood work for many things.

The somewhat abbreviated story: In late February I had a bout of severe, severe back pain on the right side of my back along my spine starting between the shoulder blades. It went up my neck into the base of my skull and down my right arm, which was icy/hot, tingling, and in some places numb. It was so bad I couldn't turn over in bed and had to use my left arm to move my right arm/shoulder. The next day my primary gave me a steroid injection and muscle relaxers. It resolved slowly over a few days. Exactly one month later I was at a presentation and developed severe double vision out of nowhere. I could not even drive, even walking was difficult it was bad it was disorienting. I had to get a ride home. It lasted about 15 hours. I went to my primary who called a neurologist, who ordered a brain MRI. I also went to an ophthalmologist who ordered MRI of the optical cavities. The neurologist (not the one I saw today) diagnosed 4th cranial nerve palsy and said the MRI looked fine to him so I "must have been really tired." But the neurology report found optic neuritis to the left eye (same eye with the palsy). The ophthalmologist had me come back and found vision loss in the left eye field of vision (lower, right quadrant). I also had a situation where, after a run, as I went to suck water through a straw, I developed the most agonizing jaw pain and really couldn't move my face for a few minutes. It was awful.

Other things: I have been having crazy sensations during this whole time. Facial twitching, numbness in one part of my left foot. Extreme tiredness - not all the time but more randomly. Visual issues. Sometimes I will get wave after wave of tingling from my neck through my scalp. Weakness in my hands. I could go on and on.

But my brain MRI was completely clear. It was just the one spot on the optic nerve. And of course, I will have the spinal MRI Saturday.

My question is - if you have been diagnosed with MS, did it start as CIS? Was your brain clear (I guess I am wondering how common that is)? Also, did you find in hindsight that you had milder symptoms for a long time? I remember the same foot numbness at least 3 years ago, and I have to say that the random tingling is nothing new to me, to the point that I felt like it was "normal." During the same time as the foot symptoms 3 years ago, I also had a strange "jolt" feeling that was somewhat momentarily disorienting. I ignored all of this, thinking I must be tired, dehydrated, etc.

I had B12 checked earlier this month and it was in the standard range, as well as folate RBC and many other vitamin/mineral labs. Everything was in a normal range, although D was in a low normal range. The neurologist is redoing all of this, as it wasn't on his orders a few weeks ago and he wants to do it again. He's also doing tons of other things - NMO, TB, Lyme, Lupus, etc., etc., etc. He made it sound like he's doing this to rule out, because he feels it is MS.

I guess I am rambling... head is kind of spinning. Looking for any thoughts. I think I am most confused about the tingling/numbness. I have honestly had these types of sensations so long, it's hard for me to wrap my mind around the idea that they aren't normal and everybody doesn't feel it. I'm actually worried about the MRI and lumbar puncture showing nothing, because then I feel like I am back to square one on a diagnosis for the vision problems, back problems, jaw issue, etc. In a weird way, I am looking forward to a diagnosis so I can move forward.

Thanks for listening if you made it this far!

[jesski]

I've noticed some questions about specific vitamin levels on other threads, so I am going to go ahead and elaborate on that here.

5/4/16

Folate, Hemolysate 312.7 ng/mL Not Estab. ng/mL
SR Hematocrit 40.9 % 34.0 - 46.6 %
RBC Folate 765 ng/mL >498 ng/mL

Magnesium RBC 6.6 mg/dL 4.2 - 6.8 mg/dL

Vit D, 25-Hydroxy 33.4 ng/mL 30.0 - 100 ng/mL

Vitamin B-12 500 pg/mL 180 - 914 pg/mL

I have not had homocysteine checked since last June, but it was normal then.

I have two MTHFR gene mutations that can compromise my ability to absorb B12 and folate, and mess with homocysteine. Last June my B12 was only 220, which, although it was in the lab's standard range, my doctor was not happy with it so I take a methylated form of B12 supplement now.

I also had a lot of inflammation markers in the gut last June in stool testing, and have been seeing an integrative medicine physician since then for GI problems I've had for decades.

[lyndacarol]

5/4/16

Folate, Hemolysate 312.7 ng/mL Not Estab. ng/mL
SR Hematocrit 40.9 % 34.0 - 46.6 %
RBC Folate 765 ng/mL >498 ng/mL

Magnesium RBC 6.6 mg/dL 4.2 - 6.8 mg/dL

Vit D, 25-Hydroxy 33.4 ng/mL 30.0 - 100 ng/mL

Vitamin B-12 500 pg/mL 180 - 914 pg/mL

I have not had homocysteine checked since last June, but it was normal then.

I have two MTHFR gene mutations that can compromise my ability to absorb B12 and folate, and mess with homocysteine. Last June my B12 was only 220, which, although it was in the lab's standard range, my doctor was not happy with it so I take a methylated form of B12 supplement now.

I also had a lot of inflammation markers in the gut last June in stool testing, and have been seeing an integrative medicine physician since then for GI problems I've had for decades.

Welcome to ThisIsMS, jesski.

Your doctor was wise to recognize that your B12 level of 220 pg/mL is frankly deficient (In Japan, any level below 500 pg/mL is considered and treated as deficient.). Vitamin B12 deficiency can manifest with neurological symptoms.

Your 25-hydroxy D level (at 33.4 ng/mL) is not optimal. The California-based GrassrootsHealth organization (http://www.GrassrootsHealth.net) recommends 40-60 ng/mL. It would be a good idea to discuss raising your vitamin D level to the upper end of recommendations (some neurologists recommend between 80 and 100 for patients with neurological symptoms; all of your symptoms qualify). The vitamin D test should be repeated to verify that you reach the targeted level, and then testing should be performed regularly to be sure you maintain the level.

As for your lab's standard range of 30-100, vitamin D expert Robert P Heaney at Creighton University has written that the Institute of Medicine miscalculated:

http://blogs.creighton.edu/heaney/2015/ ... vitamin-d/

[NHE]

Hi Jesski,
Welcome to ThisIsMS.

...a cervical and thoracic spine MRI and chest CT (Saturday).

The MRIs make sense, but why the chest CT? A single CT scan of the chest uses the equivalent radiation of about 270 chest x-rays. That's several lifetime's worth of radiation exposure from just one scan. I would recommend avoiding CT scans unless they're absolutely necessary and there is no better alternative. The MRI is a standard for MS diagnosis.

I have two MTHFR gene mutations that can compromise my ability to absorb B12 and folate, and mess with homocysteine. Last June my B12 was only 220, which, although it was in the lab's standard range, my doctor was not happy with it so I take a methylated form of B12 supplement now.

By the way, do you take a methylfolate supplement? Have you had your homocysteine checked?

[jesski]

I looked at the CT order, and the purpose is to rule out sarcoidosis.

I do not take a methyl folate supplement, but my recent RBC folate test was comfortably in the normal range. I had homocysteine last done in June 2015 and it was normal.