Long-time lurker looking for advice :-(

[lovemy6monkeys]

I was very active on here last year, but for the last 6 months I've been lurking more than posting.

A quick recap of me:
I was diagnosed with MS last August after a year of study symptoms, including 2 courses of Solu-Medrol last April/May. My tests have all been considered normal, so I was diagnosed based on clinical evidence. I do have some subtle lesions, both in my brain and my spine, but they are so subtle that my MRIs have been considered normal. My neuro is 80% sure I have MS and has diagnosed me as MS, but still is willing to look into other possible diagnoses (his first career was an MIT-trained electrical engineer, so he is very analytical and looking for the level of being 100% sure, though he admits being 100% sure will probably never happen). I have been on Copaxone since Sept 2010.

For the last 6 months I have just tried to get used to my "new normal" and not stress too much. I have tried to "roll with the punches" and get through my bad days and enjoy my good days.

I have had eye issues for over a year. It is always my left eye. I developed down-beat nystagmus last year. I had VEPs done 4 months apart, and there was an increased 2 millisecond delay in my left eye (it went from 8 msec to 10 msec...not a big delay, but my neuro said it is showing progression). I have had problems not tracking while reading blocks of text. Rooms seem dim at night, even with lights on. I no longer drive at night, I don't feel I can do so safely. A couple times I had issues where my pupils seemed to get stuck and not dilate when I went from the bright outdoors to inside the dim house.

So, this eye issue is ongoing. In the last 6 months it went from an achy eye that felt off, to a whole weird thing on my left side. I will say headache, because that is the best way to describe it, but it really isn't a headache, it feels like the back of my eye and behind my eye aches.

The process starts with the eye aching. It progresses and becomes more painful, and then I will start feeling the ache from my eye toward my ear, and that ache is constant. I will also feel pain either on my head right over/behind my ear, or deep in my ear. This is more painful than the eye ache, but luckily it is not constant, it will be there for a couple hours, go away for a couple hours, and come back. This "phase" usually lasts about 3-5 days. I have had a few instances of very sharp stabbing pains right above/behind the ear, but luckily this only lasts seconds and hasn't happened too often. Those stop me in my tracks :-(

The usual pattern to this is it gets progressively worse for about a week, peaks for about 3-5 days, then gets better over a week or so. I will usually have about 1-2 weeks with no pain or eye issues.

I went to my neuro yesterday because not only is the pain getting worse each time the cycle happens, but this last time I had 2 pain-free days before the cycle started up again. Right now I'm 5 days into the ramp-up phase, and I've felt the ear ache a few times already, and I've even felt it a couple times in my right ear (it has never been on my right!)

My neuro is wanting to rule out non-MS reasons. He says it is a neuralgia, but he is not sure of the cause. He has put me on Valtrex for the next couple weeks, 3 times a day for 3 days then I can take 1 or 2 a day after that. His thought is it might be a reemergence of the chickenpox virus (I had it when I was 4 or so) that is attacking my nerve. He said if this is the cause I will notice marked improvement by the 3rd day of meds.

I have looked online and it says that the pain caused by shingles/chickenpox virus is usually gone by 6 months, and almost always gone by a year. My pain is not only still here more than a year later, but it is getting worse.

I also told him that sometimes I get numb or tingly areas on my right cheek...he said I have V4 nerve damage. I'm not sure if that could be connected to the left facial pain problem or if it is just a coincidence?

He ordered a bunch of blood tests, including 2 herpes tests (neither DH or I have ever had cold sores, etc), a urinalysis, a bunch of other ones that I can't remember, and he ordered an overnight pulse oxygen monitor for me. I go back on June 2nd to go over results.

Have any of you had a similar problem? I'm hoping it is the reemergence of the chickenpox virus, because it would be awesome to just take a pill for a couple weeks to make it go away. But, everything I'm reading online doesn't really seem to fit.

I apologize for babbling on for so long! Thank you if you have made it this far :-)
~Jess

[figuerpa]

Hi, welcome back!!! I was wondering what happened to you, you were very active on here for a while.

I can't add to what you are going through, I don't have that kind of pain, well let me rephrase taht, I do have pain in my ear/face but it has never gotten to the point where I tell my doctor about it because when I see him of course the pain isn't there and I don't think about telling him.

Wishing you the best.

Paula

[Deb61]

Hi!  I remember you from last year!  I have also not posted much the last six months and just came back.  

I would be you have trigmenial neuralgia with the symptoms you're describing (all but the eye issues).  These symptoms matched the ones that I had over the last couple of years and I have several bouts with this.   I was prescribed Gabapentin.  I don't think it's uncommon for MS'ers to have TN.  

[Sidesteps]

Will you keep me updated on your appointment June 2nd. I would like to know your results and see if we can help guide each other - seems like we have similiar issues. My Neuro said it was optic neuritis but the tests came back within normal limits. I'm at a loss what else this could be. ...

Thank you for your post - please keep posting.
~Barb

[lovemy6monkeys]

Thank you everyone for your replies!

Sidestep: I've noticed that a lot of my issues tend to be worse right near my monthly cycle, also. My vision also keeps testing at 20/20, even with feeling like it is blurry. I have never had double vision, though. I'm sorry you are having eye issues too :-(

Kelly, when I saw my neuro last Fall he actually said 'optic neuritis' for the first time (this was when my VEP showed the 2 msec decline in 4 months time). This time he said something about optic disc margins, and said it means there has been damage in the last 6 months, possibly ON again (if I'm understanding what he said correctly)

Shell, thank you for the welcome back! I have been trying to post more, but someone usually has better advice than I can give so I stay quiet. I go back on June 2nd to go over all the results. I'm not feeling confident that the new med will work, but I'm still hoping it will. I worry it will end up being a situation where there is no known cause, and I end up having to take something to control the symptom :-(

I guess the one positive is my neuro right away ruled out migraines. I've heard that a lot of times any head pain will get pigeon-holed into being a migraine.

Thank you for all the help :-)
~Jess

[sllowe]

Well welcome back!

What a good doc your have there. Treating you and the disease and admitting he'll prob. never get the 100% definite.

I don't have a lot to add in the area of the eye only to say I have had it, but not to the degree that you have.

The doc sounds spot on w/his care - making sure there is not another cause. This is something many wish we had in a doc - and not just the....go see another specialist line and let me know what he/she determines.

Since you are not seeing marked improvement like he said, chances are, you have no worries over the chickenpox :(

When are you scheduled to go for the follow-up?
-Shell

[Sidesteps]

Kelly,

That is EXACTLY what my eye felt like at it's worse. I just have a lot of residual issues but my VEP does not indicate abnormal latency in the P100.

It appears Luvmy6monkeys is the same - all the symptoms but the test is not indicative of optic neuritis.


Odd!

[anon07072023]

I think quite a few people with MS have vision issues.

Did all of this start out as optic neuritis or do they say it wasn't that?  I've had optic neuritis 3 times in the last 2 years and it sounds somewhat similar to the symptoms that you describe. And once you've had optic neuritis, things may cause it to flare up - like an increase in body temperature or fatigue, and your visual acuity may be diminished.

I would get a horrific stabbing pain behind my eye. It felt like it was between my eye and my ear, but definitely stationed behind the eye. It felt as if someone was pulling the muscle behind my eye or something like that and it would feel really achy. And there seemed to be more pain when I moved my eye around.

I hope they can figure everything out for you.
-Kelly  

[Sidesteps]

PS. Please disregard the typo's. I am not having a good day. :(

[Sidesteps]

I love the name... I have 4 monkeys! lol ~

I can SOOOO relate to your post. I am not dx'd but I have been eye issues that are similar. They started when I was sick this last Fall. My VEP have also been within normal limits.

The best way for me to describe the issues is they seem "off" or "unbalanced." I have had the aching, pain behind the eye as well as blurred vision and reduction in acuity. It hurts to move it and has felt "scratchy" at it's worst. I also have had an intermittent headache near my temple/right eye. This usually lasts about 3 to 5 days.  The odd thing, I've noticed during the "flares" my right eye appearance changes and it will even look very tired (the whites become a little red.) It continues to felt numb and heavy surrounding outter edge. I wondered if I had a mild case of Horner's syndrome.  I have constant double vision in my left eye and my right eye has intermittent double vision (different direction.) Oh! and my last flare I developed facial pain that felt like someone was stabbing me with a needle (it has now subsided.)

The Neuro who saw me in the fall noted nystagmus and very subtle INO but no one seems to be able to explain the ongoing issues. My vision has been tested and I saw an Opth. who did not pick up on any issues. My vision is 20/20 or 20/25 (not enough to cause these issues) so I don't know. Either way, it is very uncomfortable! I also avoid driving any other time except during the day. The other symptoms get worse about two weeks (usually right around my monthly cycle) and I do have a couple of good days in the middle of the month.  


Actually all my symptoms seem to cycle better (wiith some bad days scattered in there)for a couple weeks then definitely worse for about 10 days unless I'm in a flare (which was two months ago.) I have felt "better" recently except my new normal which includes twitching, jerking, tremor's, vision issues and facial pain.

You are not alone. I hope you feel better soon. I am glad you found a doctor who "believes" and is treating you accordinging. I haven't found that doctor yet. I have an appointment with a new Neuro in June. *crossing fingers*