Wondering if I might have MS

Hello… I’m Lisa (46 years old) and I just joined. I’m seeking feedback about my medical issues because I’m beginning to wonder if I might have MS. 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. Both the cyst and the chiari malformation were noted to be “incidental findings” by the neurosurgeon. 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 (in sort of a helmet distribution) that felt like tiny bee stings. I was diagnosed with occipital and trigeminal neuralgia which I’m currently gabapentin for. 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 so the results were less than reliable. I return to my neurologist for a follow-up appointment. I had started having painless spasms in my legs so she ordered an EMG and nerve conduction study. Those were done the same day and showed normal findings so they ruled out ALS and other peripheral nerve possibilities. 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 (green signal) with two technicians working together. The VEP results were very strange. It showed only a reading for the low contrast on one eye and only 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. He said there could be something in my head causing a disruption in the signal. The doctor told me to take the printout with me to the neuro opthamolgist in June. I sent the VEP results to my neurosurgeon and my neurolgist. The neurosurgeon 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”. I have a follow-up brain MRI in July to see if the cyst has grown as well as other possible changes. My neurologist scheduled me for three days after the MRI in case of any changes that might affect my treatment. After all of the reading I’ve done, I’m wondering if I might have MS. I have a shocking jolt (not really painful but uncomfortable) that goes down my spine when I bend my head too far forward (possiblly Lhermitte’s sign?). I get extremely tired sometimes 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 without warning. I’m having issues with bladder control which began about 2 months ago. I’ve also had palatal myoclonus for 20+ years. So, with the trigeminal neuralgia, fatique, bladder issues, myoclonus, and possible Lhermitte’s sign… does it seem possible that I have MS? Any comments would be appreciated. Thanks and God bless!

Hi Lisa

I have no idea if you have MS but just want to reply to you.

The bladder issues can be dealt with via the Bladder and Bowel clinic which you can self refer to.

Wishing you well.

Carole x

Hi Lisa

You do seem to have been through the mill and having to deal with a variety of specialists hasn’t perhaps helped.

Yes, when you list the symptoms at the end of your post, it does seem possible that you have MS. But take note that there are other possibilities too which share symptoms with MS. And for example, you’ve decided that you have Lhermittes sign, but there could be other possibilities for the jolt down your spine upon tilting your head. Only a neurologist can diagnose MS, and only then after having reviewed all the test results and done a neurological exam.

So, July seems like quite a long way off for you to wait for another MRI and follow up neurologist appointment. Is there any way you have of bringing that forward? Perhaps you could try a phone call to the neurologists secretary to see if it could be speeded up at all? Or maybe write to the neurologist, explain all of the symptoms that you have tied together and ask him/her whether there is reason enough to do some more investigations with the intention of ruling MS in or out?

As Carole has said, you ought to be able to self refer to a bowel and bladder service, but maybe ask for your GPs advice on all these matters as well.


Thanks for the replies. I picked up the visit summary from my local eye doctor and he noted: “Test shows degradation since previous test (March 2017)” in reference to the abnormal VEP. I’ll be having my follow-up MRI on June 22nd. They had to reschedule me because the neurosurgeon’s schedule changed and I was lucky enough to be moved to an earlier date. I’m now waiting to see if my neurologist will be ordering blood work for electrolyes, B12, and D. I’ve been having more intense muscle twitches and the neurologist said that she doesn’t think it’s related to my medication or the neuralgias. She suggested “reaching out” to my primary care provider to have my electrolytes checked since that could cause twitches/spasms. My PCP won’t order any blood work unless I have a COMPLETE physical and I can’t fathom why having my girly parts checked would be necessary at this point. Forgive me if that’s saying too much. I’m now having pain on top of my right foot that’s making me limp. I’ve done nothing to injure it, so this has me baffled. Has anyone here seen a neuro ophthamologist and if so, what do they do that a regular ophthamologist doesn’t. I’m not sure what to expect when I go to that appointment June 14th. Thanks for any and all feedback. :slight_smile: