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.
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
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.