I think I might have MS... seeking feedback

[LisaH]

Hello... I'm new here and in search of feedback. I went to my doctor in November of 2016 because of stabbing pains in the back of my head (left side). She ordered imaging and the CT and MRI showed a large (2+ inch) lesion in my pituitary. It deforms my optic chiasm and encases arteries, etc., so I was referred to a neurosurgeon. He diagnosed it as an arachnoid cyst and told me it's congenital and I've had for a very long time. It also revealed that I have chiari malformation. He contacted my local eye doctor to have a visual field test done, which came back with defects in both eyes but primarily in the right eye. I was also referred to a neurologist for the head pains, which by then had moved to my eyes, forehead and other parts of my head. I was also having stinging in my head (like a helmet distribution) that felt like tiny bee stings. I was diagnosed with occipital and trigeminal neuralgia and I'm currently taking 1800 mg of gabapentin daily. It helps most of the time, but sometimes the neuralgia outruns the medication. Because my visual field test was abnormal and because of the large cyst, my local eye doctor scheduled two VEP tests and another visual field test. He wouldn't say anything specific.. only "I just want to make sure this isn't progressing". The first VEP showed "normal" results but they were unable to get a clear signal on my right eye. According to the diopsys training video, testing is possible with a yellow signal but highly discouraged. The doctor didn't seem concerned and said "we'll try to get a green signal in the future". In the meantime, I return to my neurologist for a follow-up appointment. I had started having quivery spasms in my legs so she ordered an EMG and nerve conduction study. It was done the same day and was normal and ruled out ALS and other peripheral nerve possibilites. She was also concerned about my visual field test results. I was referred to another eye doctor who had another visual field test done and my right eye showed even more defects (mostly peripheral). She referred me to a neuro ophthamologist in case the defects are because of the cyst in my head. I have that appointment next month. I returned to my local eye doctor for the next VEP and this time they were able to get a good connection on both eyes (both green) with two technicians working together. The VEP results were very strange. It showed only a reading for the low contrast on one eye and high contrast for the other eye but not vice versa. The P100 did not register at all. It says "P100 not identifed, abnormal VEP response". The doctor was baffled with the results and said that there might be a latency but it's unclear. Of the readings that did occur, the right eye latency was 107.4 with an amplitutde of 8.0. The left eye was 14.2 amplitute (high contrast) and a 100.6 latency. I'm not sure if those readings are reliable considering the fact that the VEP was unable to calculate a P100. The doctor told me to take the printout with me to the neuro opthomolgist in June. I sent the VEP results to my neuro surgeon and neurolgist. The neuro surgeon said that the VEP is not because of the cyst. The neurologist said, "The VEP is not related to the conditions you are currently being treated for in our office". Just an another note.. I was diagnosed with palatal myoclonus over 20 years ago and that's now a part of my diagnosis at the various doctors offices. I'll be having a repeat MRI in July to see if the cyst has grown. My neurologist scheduled me for three days after the MRI in case of any changes. After all of the reading I've done, I'm wondering if I might have MS. I have a shocking jolt (not intense but uncomfortable) that goes down my spine when I bend my head to my chest and it seems to be Lhermitte's sign which I've read can be related to MS. I get extremely tired on some days and can barely force myself to do basic housework. I might have more energy for a day or so and then I'm exhausted again. Any comments would be appreciated. Thanks and God bless!

[Snoopy]

Hi LisaH,

There is no symptom exclusive to MS that include Lhermitte's sign. When related to MS, Lhermitte's sign is due to lesions on the cervical spinal cord. If you haven't had a spine MRI I would suggest asking for one.

Diagnosis of MS is based on a patient meeting the diagnostic criteria for MS -- The revised McDonald Criteria. The criteria relies heavily on MRI evidence and at this point you don't have lesions consistent with MS. You seem to have a good team of Drs. and will hopefully have answers in the near future.

[LisaH]

I know there's no symptom exclusive to MS and I said in my post "Lhermitte's sign which I've read can be related to MS". I haven't had a spine MRI at this point. I am quite anxious to get my follow-up brain MRI because everything seems to be in limbo until that happens. My neurologist scheduled the follow-up for a few days after the MRI because it might reveal more information.. and not just about the cyst, she said. The neuro surgeon doesn't seem to think the cyst (even though it's in the top 5% in size he's seen, he told me) is dangerous at this point. As a matter of fact, he referred to the cyst and the chiari malformation as "incidental findings" not related to my pain symptoms. What's ironic is that the cyst became the main focus at every appointment with every doctor after that. The first neuro surgeon that I was referred to (with 40+ years of experience!) looked at my MRI and said, "I'm not the doctor for you. You need to be in a university setting" and referred me to Winston-Salem. I hope I don't come off as crazy by saying that I think I have ms. My health issues seem to point toward it in many ways (the trigeminal neuralgia, fatigue, myoclonus, and visual defects for example). I'm hoping that I don't turn out to have it, but if I do, I'd prefer to know sooner than later. Thank you for the reply, Snoopy.

[jimmylegs]

hi lisa the jolt on neck flexion does sound like lhermitte's. characteristic of a spinal lesion, reasons for which do vary. diet is one possible consideration - what's yours like typically?

[LisaH]

It feels like what I've read Lhermitte's sign feels like, but I could be wrong, of course. As for my diet, it's quite varied actually between home-cooked meals and healthier take-out options (from my favorite Japanese restaurant nearby). I can't think of anything that I might be lacking in my diet that would cause such a symptom. Can you elaborate more?

P.S. I forgot to mention in my initial post that I'm 46 years old. I noticed others have posted their age so I decided I should do the same.

[jimmylegs]

i'm thinking of b12 in particular, and related cofactors for absorption. copper is another possibility to consider. i ate what i considered excellently healthy home cooked meals (and sushi, nomnom ) for over a decade while my nervous system slowly decomposed :S then i got the wake up call with my first serious 'attack' and am left with permanent nerve damage and a *much* more detailed and informed understanding of what healthy diet really means. aside: i used to get random stabbing pains. pretty much all my life until i got on this intense post-dx nutrition journey, and now i forget all about them until someone reminds me, as you have this eve

if you have a scan through these 6 pages of posts, there are some good details related to diet review and bloodwork. potentially of interest.
http://www.thisisms.com/forum/introduct ... 28969.html

[LisaH]

Thank you for the information. I'll certainly mention to my doctors about checking for those possibilities. By the way... is there a way to attach an image to our posts? I'd really like to share my VEP results for those here who might make more sense of it for me.

[NHE]

By the way... is there a way to attach an image to our posts? I'd really like to share my VEP results for those here who might make more sense of it for me.

Hi Lisa,
Tips on posting pictures to the forum is discussed in the Forums FAQ.

http://www.thisisms.com/forum/site-supp ... tml#p40760

[LisaH]

Thanks for the instructions on how to add an image! Here's the VEP report for anyone who might shed some light on it for me:

[LisaH]

Also... here's a top view of the cyst in my head.

[jimmylegs]

wow i am no mri tech but from what i *have* seen, just wow. i don't know enough about cysts to make any kind of informed comment. i'd just be looking into how they form and the processes involved, and if there are any ways that can go wrong with a nutrition link. but off the top, nothing sry.
and again sry i also have no idea how to read the other results :S

[Snoopy]

It feels like what I've read Lhermitte's sign feels like, but I could be wrong, of course.

I have a shocking jolt (not intense but uncomfortable) that goes down my spine when I bend my head to my chest and it seems to be Lhermitte's sign which I've read can be related to MS.

Lhermitte's causes abnormal sensations (vibrations/buzzing, electrical shock, tingling) when bending the head down and can be felt spine down or waist down. These sensations can be repeated each time the head is bent down but they will only last seconds. Lhermitte's, in MS, is only related to the cervical spinal cord and why I suggested a MRI of the spine. Lhermitte's sign is not related to the brain.

[LisaH]

Thanks very much for the replies. I just got home and was hoping someone would have commented on the VEP results. I'm as stumped as my eye doctor as to what it means. I guess I assumed the folks on here had seen their fair share of VEP results and would have feedback.

[LisaH]

I want to add something that may or not be relevant. I had about a dozen "episodes" over the course of about 3 months that are quite difficult to explain. The episodes started with a pain in my lower chest/rib cage area that radiated up (like a V) to my neck. The arteries in my neck felt constricted even though I could breathe, swallow, and talk fine. It felt as if an invisible hand was around my throat restricting the blood flow. The first time terrified me but I learned with future episodes to lie down and just wait for it to pass. One was so bad that I actually thought I might die. I don't think it was anxiety related in any way. I could be quietly reading, cooking, shopping, etc. so nothing in particular seemed to trigger it. The last time this happened was in early November and I hope it never happens again. I didn't report this to a doctor because it's so strange and there's that fear of being seen as crazy. Since my other medical issues have happened and I've started to suspect MS, I'm wondering if those episodes were an MS attack of some sort. Does this sound familiar to anyone or make sense at all related to MS? Thanks in advance for any comments.

[NHE]

Thanks very much for the replies. I just got home and was hoping someone would have commented on the VEP results. I'm as stumped as my eye doctor as to what it means. I guess I assumed the folks on here had seen their fair share of VEP results and would have feedback.

I've never had a VEP test. If your doctor can't interpret the test results, then they should consult with one that can. You can always try putting "interpreting diopsys vep results" into your favorite search engine. I found a few things, but nothing that gives concise answers. Example... http://webvision.med.utah.edu/book/elec ... otentials/

Oh, the second page of the following flyer compares healthy eyes to optic neuritis (but without an explanation of the data). http://diopsys.com/download/diopsys-vep ... b42562e0cf