Eyes
 

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.:)

Tests for autoimmune problems?
 

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

Hi Silverlady
 

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.

charts
 

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.

Gee Aussie, that's a toughie?
 

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

These are the blood tests I have done in relation to immunology
 

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.

Aussie
 

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........ :)

Explaination of Sjogren's
 

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

And, for those with neuropathy--
 

--there are a number of other immunological tests that can be done, based on the type of neuropathy one has, that look for specific antibodies to components of peripheral nerve.

The most common tests that are done are thsoe for anti-MAG (myelin associated glycoprotein) antibodies; these are common in certain demyelinating sensory syndromes. One also is usally tested for the sulfated glycoprotein (SPGP) as well.

Then, there are tests for the anti-sulfatide antibody (often found in syndromes with sensory loss or dysthetic symptoms), and others for specific components of nerve, labelled GM1 (this one is found in many motor syndromes), GD1a and GD1b (mixed sensory-motor syndromes), GQ1b (Miller-Fisher and other neuro-ophthalmologic syndromes), anti-Tubulin (soemtimes found in chronic demyelinating neuropathies), some other antibodies associated with vasculitis or ANA, such as c-ANCA and p-ANCA, and those associated with paraneoplastic syndromes (anti-Hu, anti-Yo, anti-Ri).

You can see this gets complicated. Very few centers have the capacity to run all these tests. Many neuros don't even know of the existence of some of them. It's why places like Cornell-Weill, Hopkins, Mayo, and the Jack Miller Center are so valuable--much of the research on these autoantibodies stems from these centers.

LizaJane has all these on her charts, as well as some more associated with attacks on other organs (such as the pancreas and thyroid gland).

Here's a good paper that describes blood/serum tests for neuropathy:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

Thanks guys for replies
 

I think I need to keep an eye out for sjogrens, and will ask my neuro about more specific tests. I am not due for another 2 months yet. She sees me every 3 months.

Glen, is vaculitis a cause for PN? How does one know if they have vasculitis??

Absolutely.
 

There are many vasculitic diseases that can cause neuropathy as a secondary complication, either through compressive swelling on nerves caused by inflammation, or through ischemic breakdown of blood vessels that support tissue, including nerve, so that nerves no longer get sufficient nutrition, oxygen, or metabolic waste removal.

Nerves affected can be varied, from the small unmyelinated fibers to the largest ones (the latter often happens as a mononeuropathy or mononeuropathy multiplex).

Many of the ANA-related autoimmunities have vasculitic components, so neuropathy can happen in lupus, Sjogren's, Churg-Strauss, Polyarteritis Nodosa, Bechet's disease . . .there's even an entity known as peripheral-nerve specific vasculitis.

The Washington University Neuromuscular site has a good listing of these:

http://www.neuro.wustl.edu/neuromusc...tml#vasculitis

Aussie,
I have ocular myasthenia. All of my vision tests come back normal, but there is a definite problem with my vision. I never go to a regular eye doctor. I see an ophthalmologist. They can see much more behind the eye and are specialists. I have a pseudo tumor behind my left eye and it was only detected by an MRI. You know your own body. Continue to pursue. It could be a very simple thing. I also have chronic blethritis which although not dangerous, can be very irritating and also affects my vision. There are so many things that can cause vision problems. The prednisone that I have been on for 5 months has changed my vision also. Have you changed medications? Check the long term side-effects of any that you may be on. Good luck.
Judy

Thank you for information
 

When I went to optometrist I was given a referal to go see the opthomologist. I didn't make an apptment yet, and was contemplating not
going at all.

But I think I will go ahead and make the apptment. It's probably better to be prudent, than to risk having something pop up with my visoin down the road.

I never go to a regular eye doctor. I see an ophthalmologist. They can see much more behind the eye and are specialists.

Sorry, but I disagree, The only difference is, ophthalmologist do surgeries and optomitrist do not. An optomitrist is just as able to find problems and usually do find the problem first. The doctor I work for, Dr. Zabirowicz is very well known for his wonderful work, his patients love him and most continue to come to him even if their insurance isn't accepted in our office. I would not trust anyone else with my eyes without his approval.

I went a regular eye doc for years until i started having eye problems.
Sorry if you thought I was criticizing them. By no means did I intend to come accross that way.

Sounds like you work for an exceptional doc. There are better than normal docs in all fields.

It seems that I tend to put my foot in my mouth more than not.

I told her what I did and did not tell her what to do. I just said what worked for me and mentioned some things that caused my problems. My experience with my specialist has been positive and that is all I meant.

Judy

Is ok Judy, I just wanted to clear up that point. It is true, I do work for an exceptional doctor. Believe me, he has a few not so great habits, yet he is wonderful to his patients. One time we had this girl come in who thought she had a bad eye infection, there was nothing wrong with her eyes, she had severe emotional problems and needed help. Dr. Z even offered to take her to a doctor who could help her, he was going to drive her there--now that is above and beyond what many doctors will do today.

I didn't mean to sound accusing either, just wanted to throw an opinion out there.

Thanks for responding. That is how misunderstanding start and now we both know we weren't on the same track..........but we are now.
Thanks again and take care,
with warm reqards,
Judy :)