• 2 months ago

    Could I 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 taking 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. 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? I'm uploading an image of my VEP results and a top view from my MRI showing the large cyst. Any comments would be appreciated. Thanks and God bless!

Responses

  • 2 months ago

    RE: Could I have MS?

    lisahnc, I hope your medical team can solve the mystery soon. Many different medical conditions can cause the same symptoms as multiple sclerosis. If you do receive an MS diagnosis, please know that WebMD provides support and information about the disease and its treatments. Lots of other health sites and support communities devoted to MS exist as well. Please give us an update when you know more. Take care.
      • 2 months ago
        Thank you so much for the reply. It seems to take forever between appointments with the various doctors I'm seeing, so it gets frustrating. I keep hoping someone with VEP knowledge will see my report and make some sense of it. Take care and God bless.
  • 1 month ago

    RE: Could I have MS?

    I also, had Trigeminal neuralgia with the following: stabbing pains in head, drooping face (Bells Palsy), tingling in head, numbness in head when laying down to sleep, burning in head, tingling in right side of face, right eye involvement with dry-itchy-granular feeling. Had extreme fatigue. It took 2-years to find a specialist that diagnosed me with "internal shingles" in my head with trigeminal nerve involvement. I was put on treatment of anti-viral medicine 3-times a day for 8-weeks then a maintenance dose that I have continued on long range. The diagnoses was made by doing test to rule out other diseases and the list of symptoms I had for almost 2-years.
      • 1 month ago
        You've certainly been through a lot. It's great that your specialist stuck with you to rule out the possible causes and was able to treat you. Hope you're feeling better. Thank you for sharing your questions in our community. --Kim
  • 1 month ago

    RE: Could I have MS?

    Hello. I have MS and some of your symptoms sounds like you could possibly have MS. Especially the tingling down the spine. That's how mine started along with leg numbness and weakness. I also started having the same symptoms in my hands and was extremely tired. The MRI showed lesions on my brain and spine. I hope this helps you
      • 1 month ago
        Thanks for the replies. Since my last post, my local eye doctor noted regarding the VEP: "Test shows degradation compared to prior testing in March 2017" and "recommended further neuro testing due to VEP changes". I'll be taking the printouts for both VEP tests when I see the neuro-ophthamologist on June 14th. My follow-up MRI to check the cyst will be on June 22nd now. The neurosurgeon's schedule changed and I was moved to an earlier date. My neurologist ordered blood work today and I went to the hospital. I was expecting B12, D, and electrolytes because of the muscle twitching/spasms that I've been having. I was surprised to see that she ordered a lot more than those including CBC With Differential/Platelet, ANA, Methylamonic Acid, and Sed Rate. I think they might be trying to "rule out" possible causes of my symptoms like vitamin deficiencies, lupus, etc. but I'm not sure. Has anyone here had this type of blood work done when MS was suspected?
      • 1 month ago
        lisahnc, the additional blood work you've described is a routine part of MS diagnostic testing that rules out other causes. Lyme is usually part of those initial tests, too, but I don't remember whether you mentioned having that one done already. Sounds as if your doc is doing all the right things. Hope you'll let us know the results. --Kim
      • 1 month ago
        @lisahnc, Hi, I am 47 and I was diagnosed with MS in 2007 ( I probably had MS long before 2007 though, it just took a long time to diagnose). I am not a neurologist, but I used to be an RN. My MS was diagnosed by seeing 3 MS or myelin destructing type lesions on MRI, I had a positive lumbar puncture for high levels of immunoglobulins in my cerebrospinal fluid and they were not high when tested for them in my blood. I also had nystagmus of my eyes which kind of causes your Eyes to twitch or shake when your doctor examines your eyes as you are looking peripherally. My symptoms during this scary relapse of MS were: slurred speech, temporary paralysis of my right leg, double vision, my handwriting looked a kindergartener's, and my vision would get really blurry, and the morning of my relapse I couldn't even see my Neuropthamologist's number to call her and I never had any vision problems prior to this. I also felt like I was floating up in the air and then move down in a semicircle like pattern. On my way to work driving the roadway would tilt abt 45 degrees to the right. I kept crying for no reason and became depressed. Scary stuff, right? Dr's have to follow certain protocol testing for diagnosing MS and other CNS conditions. They do this because alot of overlap happens with CNS conditions and all conditions are treated differently. I looked at arachnoid cyst images on google and they look exactly like yours. On a flair T2 type MRI with contrast, the contrast lights up the cerebral spinal fluid as white, and that fills up the cyst on your MRI, which probably blocks visualization of the brain structures below it. It also said the cysts lie on the outside or on top of the brain. As more CSF builds up in the cyst it starts to put pressure on the brain, which is causing
        your symptoms, just like hydrocephalus in other people. They probably are doing a follow up MRI to see if any additional fluid build up is seen in the cyst and then decide to treat it medically or surgically. The Neuro-opthamologist will know a lot about this, bring her all of your MRI SCANS and your VEP studies, this will save you a lot of time if she doesn't have copies, trust me usually they don't. Write down all of your questions for the doctors ahead of time and bring them with you too, leave space to fill in the answers so you don't forget. I will try to post one of my MRI scans to show you what MS lesions look like. GOOD LUCK, I have a feeling everything is going to be good : ).