I was wondering if anyone had PN affect there eyes,and to what degree?

My PN strted in my eyes with shocks & prickling in my eyeballs of all places. It has never affected the quality of my vision, but it is has caused heaps of pain and concern.

My eyes since PN hav been very painful & dry. At times I had twitching in the eyelids,and slowly through time it feels as if my right eye muscle is a bit sluggish.

I have just come back from eye doc who said that my vision & eyes appear very healthy except for the dry eyes. She did not notice any issues with eye muscles.

Though I feel thet my eye muscle in my right eye is not functioning properly, and feels like it is not opening totally,although I look in mirror and it seems normal??

Very perplexing to say the least??

Thanks in advance for replies.

I'm curious, have you had testing for Sjogren's Syndrome? My PN pain started with eye pain too. It felt like there were tiny needles sticking in my eyes, this progressed until I was constantly blinking and I now know that the cause of my eye pain and eye distress was dry eye symptoms caused by Sjogren's. I also have small fiber sensory and autonomic neuropathy caused by Sjogren's disease.

The eye muscle could be because your eye is excessively dry and it is causing the eyeball to stick to the eyelid. I've had this happen and it makes you panic because you think you've gone blind in one eye. And Liza Jane has a friend who had severe dry eye caused by Blepharis which is a condition that develops in some people due to dry eye causing the eye to blink spasmotically.

If you haven't been evaluated for Sjogren's, I'd personally advise it.

Billye

I have been tested twice. And the neuro said she wants to re-check again due to some inflammatory process. My ESR has been raised since PN. For example mine was 28 on a scale from 16-20 last time checked. It remains up there consistantly.

I have had these eye problems, including dry eye syndrome since early onset of PN, as proven by repeat eye exams which shows poor quality of tears & extreme dryness. Optometrist has recommended a plug of some sort in drainage area, but this requires visit to opthomologist.

Also I have other really dry areas including skin & lips which require constant moisturising. But this is not as problematic as the eye stuff. One of the reasons I had so much difficulty with getting a diagnosis is that my PN first presented in my eyes with exactly what you described. A thousand tiny needles stabbing at eyballs in unison.

Needless to say, my PN is or was monophasic autoimmune in nature... thus far. I have improved in many ways, but my eyes are getting worse. Naturally I worry about my vision as you said.

I have never taken any steroids for PN either. It was never recommended.

Aussie-I don't recall if a cause has been found for your pn, but if you have dry eyes, you definitly should have an entire auto-immune workup done.


If you go to lizajane.org, you will find a page which lists all the tests needed to find an auto-immune disease. I suggest you ask your doctor to fax you ALL your lab results, if you dont already havea them, and begin filling in the charts. That way you can advocate for whatever is missing.

Dry eyes can be documented with a "schirmer's test". It's worth having to truly establish how severe this is. Dry eyes and dry mouth area called sicca syndrome, and it generally indicates something important happening. Sjogren's always has sicca, but sicca can be present with other kinds of autoimmune disorders.

Do check this out. If you've alraedy had the tests, sorry to have bothered you with this advice.

About 2 years ago I started having vision problems....a sort of 'eye fog'...vision having black to gray fog rolling thru my vision range....I actually got lucky and found a true Neuro-Opth...I was put thru a different round of tests to rule out vascular/heart issues [there were many] and the whole round of various eye tests. They were extensive and included a fresh round of MRI's of the head and neck as well. All was coming up negative until the doco actually could see my eyes when one of these events was actually happening... It was one of those kinds of obscure issues...
He honestly admitted that HAD he not actually SEEN it, he'd have written me off as a bit crazy?... All tests came back negative...every aspect checked out fine...At least, these tests are off the 'to do' lists!
His guess was a 'non-aura, non-pain migraine'. All I can say is the issue's pretty much gone to one 'event' a week compared to 5-10 a day. So I'm not worrying.. Just one more thing to add to the 'list' I guess.
I wish I could be more use...eye pains don't help on top of everything else!
Super good thoughts and maybe some fun stuff your way! - j

I have dry eyes too. Doc told me it's usually an autoimmune issue or hormonal. He will not admit it could be because of my celiacs disease, he prefers to think hormonal. Dry eye can be very painful, I am going through a bout of it now.

I also suffer from optical migraines. They start out with hazy vision all around the outer edges of my eyes, like heat waves on a hot summer day over a field. If I take Excedrin quickly, I can usually keep from getting a regular migraine too, but if I don't get it quick enough, then it hits me too. Sometimes I get very dizzy before it leaves. Optical migraines usually last a short time, an hour or so for me.

There is something called Sicca Syndrome (it is also called Sicca Complex sometimes).

Essentailly, Sicca Syndrome is what they call Sjogrens-type of dryness in patients who test negative for Sjogrens (although many doctors think that "sicca syndrome" is just another name for sjogrens, officially it is the term that is supposed to be used for patients with all the dryness symptoms of sjogrens that have negative sjogrens testing).

I have been diagnosed with Sicca Syndrome for several years now. According to the literature I have read and the information my doctor has given me - Sicca often occurs in patients who have some type of Connective Tissue Disease.

My sicca causes a lot of dryness of my eyes, and the dryness causes muslce twitching in the muscles near and behind my eyes, extra blinking, pain that feels like someone is sticking a pin in my eye, vision blurring, and other vision and eye strange/weird/annoying symptoms.

For me, the best treatment is to use natural tears eye drops several times during the day. It's important that the eye drops are the naturla tears kind so that they do not contain preservatives. It helps me a lot to use the drops on a regular basis, and when I forget to use them my symptoms increase immediately.

Here is a link to the kind I use -
http://www.walgreens.com/store/produ...id=prod1107567#



Hope that helps,
Liz

Albumin- normal
Alpha1-normal
Alpha2- normal
Beta globulin- normal
Gamma Globulin -Normal
Total Protein- normal
Electrophoresis -none detected
Immunoelectrophoresis -No monoclonol immunoglobulins
ANA -negative
RNA -negative

All these have come back within the normal lab values. Is this sufficient for Immunology testing?

The ANA & RNA were the ones that were repeated most recently again. All the others were done in March 2006 well into my PN, actually 1 whole year after PN.

Hi,
I've been tested for Sjogrens because of the severe PN symtoms, also have dry eyes......

Even though I have a normal ANA they belleve I have an auto-mmune PN - and tested for Sjogrens from least to most invasive test..... SSA and SSB are only blood tests - very easy... if those are negative they may move you on to the eye test (Schwimmes) also very easy... and lastly the salivary gland biopsys (that hurts)..... I tested negative on everything except the eye test - which really just showed them I have dry eyes and they have me use just an eye rinse to keep the from hurting too much....

So in answer, I think its prudent to have them use the specific tests for Sjogrens to rule it out........

This article discusses the diagnosis criteria and the tests to be run to determine if you have Sjogren's. Keep in mind that Sjogren's antibodies may not show up for years after the first symptoms show.

http://en.wikipedia.org/wiki/Sjogren%27s_Syndrome

Billye