[binx]

(i am sorry this is so long, but i don't know where else to turn right now. i am so upset. )

in the first week of january 2009, i had a sudden onset of a twinge at the base of my skull on the left side, became a bit lightheaded and developed a sub-occipital headache which persisted for about 10 days. during that time, i had a number of neurological symptoms present such as eyelid twitching, random finger and other muscle twitches, scalp tingling, nausea and visual disturbances, but no neck pain. i also just felt ill and had muscle weakness in my legs and arms. one day felt that my legs could not support me--like they were going to give out, but didn't.

a couple of weeks later, my eyes started to feel like they were burning. i looked in the mirror and saw that both of my pupils were dilating and contracting in a kind of pulsating fashion. after numerous visits to my GP who insisted it was a virus or anxiety and sent me home with valium, i self-referred to an ophtho-neurologist who examined me and my eyes and said although he noticed the unusual dilation pattern, everything looked perfectly normal and my vision was exceptional. he suggested i see a neurologist.

i finally got in to see a neurologist who ordered brain and c-spine MRIs in early march. the brain scan was clean, but the MRI revealed cervical spondylosis and myelopathy--specifically there are bulges at c3-4 and c4-5 and a herniation at c5-6 that is pressing 2.5mm into my spinal cord. i also had an MRA and transcranial doppler to check the cranial vascular system with normal results. the neurologist indicated PT would help and sent me on my way. i went through a few months of PT which seemed to help with the spasms in my head, but my insurance cut me off after 20 visits. subsequent visits with a couple of different neurosurgeons have put me on track to have a discectomy to remove the herniated disc and minimize the risk of paralysis from the spinal cord compression.

my eyes calmed down, but many of my other symptoms have persisted, with some days being better than others. a month ago, i once again got the same headache i had in january and began feeling generally unwell like i did in january. i also noticed some urgency with my bladder and my eyes started acting up again, along with some electric shock like sensations along my torso. i had gone to see my neurosurgeon to discuss schedule a discectomy, and told him what was going on. he said "that's not from your neck, and i suggest you visit your neurologist again to see what's going on." i asked the neurologist about MS and he said with a clean brain MRI, it was highly unlikely. even so, he ordered a visual evoked potentials test which i had last week and my results were normal. he said this removes MS from his radar and is convinced i'm having an atypical response to the spinal cord compression.

yesterday, i looked in the mirror after my eyes felt like they were burning again, and my pupils were both completely dilated to the edge of my iris in ambient light. i freaked out. i am supposed to be scheduling my discectomy for the first week of december, but now i just don't know what to do.

these neuro symptoms just don't seem to add up to a c-spine injury and i'm afraid of having major neck surgery that will leave me vulnerable to more surgeries in the future if i really have MS. i called the local research university's MS clinic, but they won't see me without a thoracic MRI which none of my doctors will order because of my clear brain and c-spine MRIs, and now normal VEP results.

does this all sound like MS to those of you with a diagnosis?

thank you in advance for any thoughts you may be willing to share.

[SallyC]

Hi Binx and Welcome. I am so sorry for your illness.

My guess would be no, it doesn't sound like MS, but on the other hand, who knows. I understand your angst.

I wish you well with your back surgery and hope it alliviates your problems.

[watsonsh]

I sent you a private message check your mailbox.

[braingonebad]

I'd agree, does not sound ms-y. Read some of my posts, I have similar C spine issues, but not the visual things you describe.

You do have something odd going on, but I don't know what's up wiyth the eyes. My thing, personally, about surgery is, you can NOT un-do it. I refused ACDF and am glad I did.

Read the spinal forum and see how things turn out for people before you go blindly down that path, okay? I know too many people who felt great for 6 months post op, then did not do well at all.



And then, 3 op's later, on higher and higher doses of drugs, they are way worse than I am.


And clear C spine - what?

You tell that neuro it is NOT clear, and you want a T spine MRI so you know what is bulging or DDD there.




Good luck.

[binx]

thank you all so much for taking the time to reply. i don't think anyone who hasn't dealt with neurological issues first-hand can understand how isolating and maddening it can be, so i am truly grateful for your input.

dear brain: i have desperately tried to avoid the surgical remedy, but now that i am dealing with bladder issues and my legs are getting more spastic and weak, if i am truly not dealing with MS or another demyelinating disorder, i have to get the herniated disc off of my spinal cord. i know the outcome can be really grim for people who have spinal surgeries, especially when multiple levels are compromised like in my case. my own beloved sister underwent a 5-level laminaplasty about 8 years ago, and also had a subsequent ACDF; she is now crippled with pain and permanently disabled.

shelley: i responded to you via private message. i think i may have sent it like 25 times or something by accident. please accept my newbie apologies!

sallyc: i appreciate your response and thank you for the well-wishes with respect to my surgery.

i see my neurologist again on wednesday and hope he can come up with some other hypotheses about this crazy eye business, and i will press him for a t-spine MRI once again.

than you again, and i am sending you all healing thoughts as well.

best wishes,
binx

[braingonebad]

Originally Posted by binx

thank you all so much for taking the time to reply. i don't think anyone who hasn't dealt with neurological issues first-hand can understand how isolating and maddening it can be, so i am truly grateful for your input.

dear brain: i have desperately tried to avoid the surgical remedy, but now that i am dealing with bladder issues and my legs are getting more spastic and weak, if i am truly not dealing with MS or another demyelinating disorder, i have to get the herniated disc off of my spinal cord. i know the outcome can be really grim for people who have spinal surgeries, especially when multiple levels are compromised like in my case. my own beloved sister underwent a 5-level laminaplasty about 8 years ago, and also had a subsequent ACDF; she is now crippled with pain and permanently disabled.

shelley: i responded to you via private message. i think i may have sent it like 25 times or something by accident. please accept my newbie apologies!

sallyc: i appreciate your response and thank you for the well-wishes with respect to my surgery.

i see my neurologist again on wednesday and hope he can come up with some other hypotheses about this crazy eye business, and i will press him for a t-spine MRI once again.

than you again, and i am sending you all healing thoughts as well.

best wishes,
binx

What have you tried? Have you been through physical therapy? Steroid shots?

There are less invasive things that may help. Even meds may ease or reverse your sx. And sometimes sx ease up on their own, too.

My biggest concern for you - aside from that surgery itself is a big concern - is that if you do one levl, you put stress on the level above and below.

since you have issues with 3 levels, you will soon enough have issues above and below them - then what? How much neck does that leave you with lol?

I would suggest, when you talk to the neuro, that you approach some less invasive tx. What can it hurt? And also, get some other opinions on this surgery, if you really need to go ahead.

Seriously, would you buy the first house you walked through the first time you saw it? I would respect my spine enough to talk to an osteo surgeon and a NS, and do a lot of reading and thinking on this.

I'm only saying, because I had someone say this to me and now I could hug him. He said "Are you using your arms?" (That was my worst sx) I said yes, it was bad but I could use them. he said "Then you have time to try a few things. Don't let a doctor bully you."

I'm not trying to bully you, just trying to offer MHO. And I am not subtle, sorry!

Good luck with all this.

[binx]

hi brain,

thanks for your input. i wouldn't be posting here if i weren't interested in everyone's opinions, so be as direct as you like. i don't take it personally.

i am going to send you a PM since our discussion has moved away from MS for the time being.

binx

[Lady]

Hi binx,
eons ago I was given Paxil, when I was having daily hives, to try to calm me or them. 10 mg sample I was given. After one month my eyes dilated, like I was an illegal drug addict or something.

When I showed my eyes to my then Neuro, he said you can't take that drug stop immediately. SSRI class of drug.

Fast forward to a new Neuro, 15 years later, I was given Cymbalta for pain. In one week my eyes dilated complete again. I was taken off the drug and that was the lowest dose in her sample pack too.

So my question to you is:

Do you take a selective serotonin and/or norepinephrine reuptake inhibitor (SSNRI) or SSRI? I never had depression or have used anything fro depression, but these were for off-label use.

I thought my eyes looked pretty, all black with a tint of green around the edge. This was an adverse drug reaction not listed on the print out. Something in my brain did not like those drug.

Some are used for depression or anxiety. Are you on any meds for this? The eye dilation might be a drug you take, not part of the disorder you have. JMO

Maybe this is helpful to you

[NurseNancy]

hi binx,

welcome to NT. i'd really like to give you advice but i'm stumped.
it doesn't seem like MS but something is definitely amiss.

i hope the surgery alleviates some of the problems.
don't give up. keep seeking answers and you will be your own best advocate.

keep us posted.

[binx]

thanks for the additional replies.

hello, nurse nancy: thanks for your kind thoughts. i agree, something is definitely amiss, and i hope we can figure out what it is sooner than later. i am going back to the neuro-ophthalmologist this afternoon to hear what he has to say about this crazy eye business of mine.

hi lady: i was taking an anti-anxiety medication called buspar until about a week ago and i stopped after the eye thing. i asked my neurologist on wednesday if he thought it could have made my pupils dilate like that and he said no. i am not currently on any other medication, so i just don't know what to think at this point.

it seems we are getting closer to ruling out MS, but i just wish someone could figure out what in the world is going on in my body!!

thanks again to everyone for "listening".

best wishes,
binx