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Could this be 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. The neurologist also noted the possibility of paroxysmal hemicrania. 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?
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Avatar universal
Well, my neurologist ordered CBC with differential, ANA test, etc. which revealed a vitamin D deficiency and low lympocytes. I was prescribed vitamin D but they seemed to not care about the lympocytes being low. My visit to the neuro-ophthalmologist revealed some mild retinal nerve fiber layer thinning in my right eye. My follow-up MRI was only of my pituitary/sella to find out if the cyst has grown. I didn't realize that it wasn't going to be a brain MRI like the one I had last November. My symptoms are progressing but my doctors don't seem to care. I'm having muscle twitches every day (arms, legs, face, back), intermittent myoclonic jerks in my arms (like a shrug but it goes in toward my body instead of up), and for the past three days I've had trembling/shaking in my head, arms, and torso. I called my neurologist who said she has no idea what's going on and to either go to my regular doctor or to the emergency room. My regular doctor referred me to specialists for a reason. What would an ER visit accomplish? They generally treat what's obvious and tell you to see your regular doctor as soon as possible. I'm so frustrated at this point. Any feedback is appreciated very much.
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I forgot to mention that the cyst and chiari malformation are both stable.
987762 tn?1671273328
COMMUNITY LEADER
Hi and welcome

You've actually been diagnosed with 2 neurological conditions a 2 inch Congenital Arachnoid cyst in your petuitary and Chiari malformation, Chiari malformation is also usually present at birth so is likely to also be congenital.

Chiari symptoms often begin during infancy, although they are usually delayed until adolescence or adulthood and can cause many of the same/similar issues you've mentioned. Chiari can mimic the symptoms of many other neurological conditions, including MS, so from my understanding the Chiari would be a more likely causation than an additional 3rd neurological condition you've not mentioned your MRI showing signs of.

I'm confused why the Arachnoid cyst would be excluded as a potential causation of your abnormal VEP results, when your MRI showed the 2+ inch cyst in your pituitary that is deforming the optic chiasm and encases arteries (etc?), a life time of 46 years would surly cause some damage to the health of your optic nerves etc but it could potentially be related to the Chiari...

Chiari malformation is associated with some visual issues, i honestly only know for sure that down beat Nystagmus is but i've also got in the back of my head that Chiari is also associated with palatal myoclonus, which can also have a visual component though it's not common......i would recommend you have a chat with the lovely people in our Chiari community and see if they can shed any light and or offer you some recommendations.

Hope that helps........JJ  
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Thanks very much for the replies. The first neurosuregeon that I was referred to (40+ years exp) referred me to Winston-Salem saying I needed to be in a university setting. He diagnosed it as a pituitary tumor. The surgeon in Winston-Salem came in (eventually) and said "This is good news!" shocking me and my husband. He said he would agree with the other doctor except for one slide on my MRI that led him to believe it's an arachnoid cyst instead. He went on to say that it's always been there, is harmless, etc. and that it couldn't be causing my head pain. The neurologist that I ended up being referred to initially suspected the Chiari malformation but my pain remained the same or became worse when I'd lie down. She said people with pain in the back of the head due to Chiari generally find relief lying down. I developed trigeminal neuralgia as well as occipital neuralgia. As for MRIs, I've only had one which showed the findings I mentioned. There was nothing noted about how much herniation there is on the chiari. Also, given the fact the there was some a fixation on the cyst/tumor, I wonder how thoroughly the rest of my brain was looked at. I'm considering a second opinion because I also feel that the 2+ inch cyst/tumor should not be considered an incidental finding. As for my optic nerves, the surgeon said my eyes looked fine to him. My local eye doctor told me that a specific MRI needs to be done to really look at the optic nerves because an MRI even with and without contrast does not determine if there could be problems there. I found out yesterday that my VEP shows degradation compared to the previous VEP (2 months prior). I don't see the neuro-ophthamologist until next month so I won't know anything further until then. My next MRI is in July, so we'll see what new information that might reveal, if any.
5265383 tn?1669040108
Chiari malformation, although I don`t know a lot about it, IS a mimic of ms from a symptom perspective.  When you are saying they termed it incidental, was that because it was minor, in their opinion?

I'm not sure how I feel about a neurosurgeon who considers a pituitary tumour that is compressing other structures benign.  I'm not a doctor, but I think I'd want a second opinion on that.  I did a quick google search:  pituitary lesions (tumours and I imagine large enough cysts) compressing the optic chiasm can cause vision loss, in particular peripheral vision and also double vision.  From what I read, anything over 1cm may cause issues.  Yours is more than double that.

L'hermittes can also be caused by structural spinal issues, so it's presence doesn't neccessarily mean MS although you will read that online.  In fact, pretty much any neurological symptom one can experience can be a part of ms, even though it may have other cause.

From what you have said, you haven't seen the results of this most recent mri.  What did the impressions section say in the prior mri?  Aside from the pituitary lesion and chiari?  Multiple sclerosis means many scars, which means there should be some evidence of ms plaque.  Was there any mention made of the optic nerves?  How did your spine look (disk herniations, compressions into the cord, etc.)

Unfortunately, at the early stages of anything, it's just a puzzle and it is slow going to assess all the possibilities.  I don't imagine ms is high on the list, however. You will have to pursue the findings you already have to make absolutely certain they are not causing your issues (which may mean a second opinion on the cyst).

The spasms could be as simple as a nutritional deficiency, which you can have assessed by your gp.  I had to have ALS ruled out twice by EMG -- the spasms, twitches and fasciculations turned out to be a rock bottom magnesium level.

Hope something here helps.
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