Can anyone shed some light???
AnonymousOctober 19, 2009 at 3:46 pm
Finally went to opthomologist and had my eyes tested. He wants to do more
test early Nov. To make it short-I had my 6 Ivig treatment on Friday. Every-thing went well and I was even bragging how the pain had suddenly subsided for the last couple of weeks. Then Sat. I was working on the computer and after about an hour I started to get a real bad dull pain behind my right eye. The same eye he examed. I went upstairs and realized it was also very light sensitive. Looked in the mirror and my eye was beet red, especially around my
iris. Felt a little nausiated too. Laid down for a couple of hours, slept but
overall, the pain lasted about 6 hours. Felt like someone was pressing on the back of my eye. Talked with doctor today, no more problems as of yet. I was using eye drops for about a couple of weeks but he did’nt seem to think
that would cause it. I was really scared Sat. He still wants to see me Nov.
3 or if I have any more problems call him right away.
I know Emilys Mom said something about her daughters eye being affected. I hope she reads this. I’m scared.
AnonymousOctober 19, 2009 at 4:42 pm
Emily’s right eye was affected. She will sometimes complain about her eyes feeling tired or heavy after being on the computer for a long time. I’m not sure if it’s the light from the screen or what is going on. She just saw the eye dr last week & everything checked out ok.
When did you see the eye dr? Did they dilate your eyes? I’m asking because that could have had something to do with it. When Emily has her eyes dilated it takes a good 24-36 hours to get them back to normal. This last time she was on the computer the day after her eye exam & complained about her eyes a little more than usual.
I don’t think you have anything to worry about. The dr didn’t sound too concerned. Did he just check the 1 eye? He should really have done a complete eye exam with both eyes. Did he see any inflammation at the back of your eye? Emily had some when she was first diagnosed but it’s gone now & has been for awhile.
It could have been something as simple as a sinus issue too. Or being overly tired. You just never know with eye issues. It is one of the most frustrating symptoms, I think.
Make sure you make a record of anytime you have that feeling again.
AnonymousOctober 19, 2009 at 8:17 pm
Thank you so much for responding. My ortho dr. did a thourough exam, he
did dialate my eyes. I spoke with him today, he said keep up with the eye drops and call him if it happens again. I just saw him 2 weeks ago.
He said he was suspisious because the nerves in my eyes were definately
different. He said he would know more when he does the other test. He did
a very detailed exam, even took pictures of both eyes and you could see the
difference in my nerves. Thanks for your support and encouragement.
AnonymousOctober 19, 2009 at 10:43 pm
I have seen my opthamologist more times in the past 5 years than I care to admit. It all started when my vision started getting blurry & I was dx with cataracts in both eyes. This was due to the large steroid infusions I was on for 21 months previous to that for CIDP. In Sept of 2004 I had cataract surgery on both eyes, two weeks apart. No problems with the surgeries in either eye.
Then last December I noticed flashing orange in my peripheral vision in my left eye, also lots of floaters. A few more visits to make sure it was only vitreous detachment going on & not retinal detachment. Then a few months later I went through it all in the other eye. Now my 20/20 distance vision is starting to deteriorate, back to the eye doctor, may need distance glasses in the future. This all happened because of my CIDP, but I never, ever had any pain in either eye. I don’t think this is normal & would keep on top of this. Also, I don’t believe it is related to CIDP, have never seen anything posted about eye pain before?
AnonymousOctober 19, 2009 at 11:55 pm
Your symptoms almost sound like uveitis or iritis–inflammation of the lining of the eye. Often with this, there is pain, redness around the iris (particularly for iritis), sensitivity to light and sometimes blurring of vision. This can be associated with less commone infection (CMV, toxoplasmosis, histoplasmosis, TB, etc) or autoimmune diseases. What goes against this being that, I think, is that the pain and redness did not last days. Usually the treatment is steroids to reduce inflammation and eye drops to dilate the pupil. Other causes of redness in one eye include allergic type reactions–often treated with a different kind of eye drops. It sounds like the ophthalmologist is being careful to check everything out which is what you want to be with eyes–they are very important!
AnonymousOctober 20, 2009 at 8:04 pm
about 3 months before my own CIDP onset. After Onset? I had what best could be described as ‘ground fog’ in front of my eyes when driving or at home! Saw a Neuro-Opth who’d scratched his head and had decided I’d had been having ‘non-aura’ migraines. I also wear eyeglasses, and my lenses changed dramatically during this period!
Five years ago, visual disturbances WERE reported as symptoms for CIDP? These days tho? NOT found as a symptom. Go figger. But? DO BE CAREFUL ABOUT your EYEs!!!!!!!!!!!!! Especially when you’ve sensory neuropathy symptoms. Your eyes are much more important now than ever! It’s scary enough to lose ONE sense, let alone others in the process to boot?
As for a connection to infusions? Do you KNOW what your rates were? Dose and how fast it was done? IT is possible that if you were given your dose too fast? It could create problems with other things, such as your eyes. Speak to your prescribing neuro about this issue…call and leave a message and keep following UP! While IVIG is a good thing? Too much of the good thing too fast can be dangerous! Put some of your questions/concerns down on paper …. in an organized manner if you can? THINK! Did your eyes start to muzz up when they upped the infusion towards the end or the like? That is what had caused my vision issues I think…that the very last ‘bit’ was pumped into me too fast at the hospital. I now have it done at home and we’ve found a way to get the juice into me faster, but w/far less side effects. A lot of it was trial and error tho.
Do not be afraid to ask your neuro some hard questions about your problem! I suspect that you won’t get much in answers? But maybe, just maybe? HE [the neuro] will investigate even a little bit? And that could/should go far!
Sure hope this helps some! ASK QUESTIONS! Do NOT take ‘don’t know’ for an answer? Because they do know, tho your doc mite not? HE’s got the resources to find out! SO keep asking! Please….
AnonymousOctober 21, 2009 at 12:08 am
I POSTED FOR THE FIST TIME IN YEARS.
NOTHING MUCH HAPPENING FOR 7 YEARS. i HAVE SOME EYE INVOLVMENT NOW. WHAT STRUCK ME IS THAT THE OPTHOMOLIGIST SAW SOMETHINK ABOUT THE NERVES BEING INVOLVED. MINE TOOK PICTURES OF MY EYES, DROPS TO DILATE. ETC. THE THREAD TITLED RELAPSE AFTER 7 YEARS TALKSABPIY EYE INVOLVEMENT.
LET ME KNOW WHAT HAPPENS. I HAVE A NEW DOCTOR ADDED TO MY RETINUE: NEUROOPTHOMOLGIST, JUST FINISHED SOME TESTS LAST FRIDAY.
KEEP IN TOUCH IF YOU CAN.
AnonymousOctober 22, 2009 at 12:49 pm
Thanks Again everyone, I definately will keep you all informed regarding my eye. No problems since last Sat. however I did break out in a rash on the palms of my hands and bottom of my feet and under my bra line, now its kinda all over me. Called my Neuro and she said it definately could be from IVIG. She said she would have to stop the treatments. I’m scheduled to have another one next month. I really am afraid to stop them but she
said maybe, she might try 1/2 dose with Benadral. My treatments take about
7 hrs. to complete so I don’t they are given too fast. Anyway, I told her I
would watch it and see. She said she only had one other pt. this happend too, and that I was responding well to the treatments (which is good news)
I have been pretty much pain free for the last 3 weeks now. I can’t believe it.
She said @ first she would have to stop the treatments because she wanted me to be safe.
My dose is 1. Gammagard 94gm/E5W190ml IV every 4wks over 7 hours.
AnonymousOctober 22, 2009 at 8:05 pm
They happened to me after my third round of IG, and the infusion nurse I had called the reps who said that it can happen? Saw my dermatologist [tho it took three times to get an appt when she could actually SEE IT?] and prescribed me two different steroid topicals that zapped it right away! THE ITCH I’d had was worse than poison Ivy or Oak! W/bumps just like it!
It’s called ‘Purititis’ and IS listed as a side effect of most IVIG products.
As I said, the trick is not to give up on the IG? The trick is to SEE your dermatologist and help them make the connection and prescribe the right topicals. IF the bumps aren’t visable at your appt? There isn’t much the doc can do!
As for the ‘eye’ issue? I got my sort of non-answer from a neuro-opthamologist. They are harder to find than hen’s teeth! Mine was referred to me by my optomitist and is, I believe, one of three practicing in the Washington DC metro area. They are either listed as neurologists OR opthamologists…rarely are they cross referenced. Don’t know why.
And I did go thru that testing that ‘sees’ the optical nerves…and many more tests as well. None were particularly invasive, per-se. Just more of them! Two-three test series at two different eye specialists. Like neuro testings, vision tests are also a process of ‘exclusion’. I was lucky that there was no apparent damage done to the eyes. When you lose your strength and sense of where you are in time and space? Losing vision gets the blood pressure up for sure! How to find? There IS a society of neuro-opthamologists, but many good neuros and opths’ are out in the fields that can do the job that’s needed. GOOD LUCK! And, Please Don’t panic! YOu will find that this is just part of your problem and like mine? Went away eventually [about 6 months].
BTW? I even had a full battery of cardiac tests done to be sure it wasn’t a TIA [mini-stroke] issue, and came up ‘aces’ there. So these problems aren’t to be ‘sneezed’ at. Better to check it off the ‘list’ and get on with things.
The ‘doctor’s seen’ list can get very long as you go on? Be sure to keep a ‘list’ somewhere of all these docs….in case you develop a ‘new’ issue? This way new docs can check out older docs’ records and get a better handle on where you stand now.
You and I are two who seem to have BOTH of these ‘quirks’! Are we distant ‘cousins’ or something? Good luck and let us know how you are doing!
AnonymousOctober 26, 2009 at 1:35 am
I was told sometimes the IVIG caused fluid buildup in eye area and the swelling is painful. Plus CIDP does cause weird vision-similar to MS. The blurry vision/floaters/depth of field problems. Some neuros/eye doctors don’t have a clue about it and others do.
The neuro eye specialist definitely wasn’t any help and this was when I had the full vision battery of tests. Called my vision problem more of a “nuisance” rather than problem. Not to me it isn’t.
I started getting inflammation in one eye-swelling/turning purple/pain-soon after starting IVIG. Eye doc gave me drops for 2 weeks. It returned a few times. Then changed IVIG from 5% to 10%-less fluid during infusion. No recurrence in for 2 years.
CIDP morphs-changes like the weather.
AnonymousOctober 26, 2009 at 7:33 am
Hi Ms Judy,
I want to tell you about this, so you might know that CIDP DOES affect eyes, though it is rare. I am one that can definitely attest to it, as it affected mine.
About 10 years back, that is what started the beginning of this horrid rollercoaster ride of CIDP, progressing down where I am today. It all started with my eyes!!!
First, prior to 10 years back, I was a very HEALTHY person, never going to a doctor, very fit, ate well, and enjoyed life. Even when flus would come around, it would skip me even when my lifemate would get the flu-it would still skip me.
My job required me to be on the computer for long hours–I set up tours for bands and have bands/band management companies/promoters I work with in USA/Canada, Europe, Africa, and Asia. This meant very long hours on the computer, as most contact is via computer/email, phone, and fax.
But 10 years back, suddenly my eyes started to become light sensitive, especially when on the computer. Oh, I remember the horrible pain in my eyes, which would eventually turn into a headache, and further into a migraine. It was awful, and I got to the point where I decided to go to a doctor, of which, like I said because I was so healthy, I hadn’t seen a doctor in over a decade. Having moved to California, (San Diego), from NYC, I did not know any doctors, plus had to call my health insurance company to understand how it all worked with health insurance and doctors-who explained that I had to go to a Primary Care Physician first and that it would be he who decided if I then had to go to an ophthalmologist, then call around to friends to see what doctor I should go to that was on my LONG list of doctors I could go to associated with my health insurance plan. I ended up picking a very good one. I went to see him, explaining the intense liight sensitivity, eye pain/eye pressure, and headaches/migraines from the eye pain. I told him working on the computer HAD to be done, as that was my business, and being told to just “don’t work on the computer then”, could not be the answer to my problem.
So, this doctor, who later proved to be a wonderful doctor, and found MANY people would want to be his patient, but was always full-up and would only take on a new patient when an opening would come up by either a patient that would move away or pass on.
He did a full examination on me. Then he came to a complete eye examination, including dilation, etc., of which his nurse put in the eye drops, so my doctor hadn’t seen my eyes yet, and you have to wait a few minutes until the drops work, for the eyes to dilate.
So, the doctor walks in, sits down in front of me to do the eye exam with that thing they wear on his head with the light that comes down so as to shine into the patients eye while he examines the eyes. First, THAT proved to be painful to start with, and pushed away from the light in my eyes, bringing on instant pain. But, I knew he had to examine them, so I bit my tongue, and let him do it. Within minutes of looking, he took off the head thingy, turned on the lights in the room as they had been darkened, then studied my eyes again. He said, “You have Horner’s Syndrome”. He kind of told me what is was, and asked if I had it since I was a child–I said no, and later when I got home, looked at pictures where I could see my eyes, and saw that I did not have it as a child. So, then he sent me to a Neuro, who tried to get to the root of what was causing the Horner’s Syndrome.
You can Google “Horner’s Syndrome” to find out what that is.
I was also sent to the Wiley Eye Institute, where I saw a neuro-ophthalmologist, and reconfirmed that I indeed had the Horner’s Syndrome.
As time went on, the different symptoms of CIDP came on, and my neuro told me that Horner’s is a rare symptom of CIDP, (which you can see that on the net).
I have to go to a neuro-ophthalmologist every six months. as they are watching to see if I have further optic involvement. I still have light sensitivity, though I don’t have to wear sunglasses to watch TV or work on the computer anymore–i have a screen filter over my computer screen.
And my neuro-ophth. put plugs into my tear ducts, to help keep the eyes moist. And I take an NSAID, Indocin, for off-the-label use, in that it keeps tbe headaches away.
So, do go to a neuro-ophthalmologist, as he/she would be more up on things, and would know that CIDP CAN affect the eyes/optic nerve.
AnonymousOctober 26, 2009 at 1:52 pm
It is sooo reasuring to hear other people have visiond problems my optomitrist said it was just age..but I do not think so ..she also said both my eyes were diffrent and just said I was just weird. For the past two years I have been plagued by floaters, and rapidly deteriating vision. Waiting now to get into opthamologist.
Thanks for all your posts..and excuse my spelling tooo tired to think today
AnonymousOctober 27, 2009 at 12:51 am
My neruo told me CIDP affects vision and sometimes IVIG may improve it.
My vision acts up, florescent lights hurt and eyes tend to be very dry. Started have fluttering twitchy eye lids this last year.
I was told I have Sorgner Syndrome (sorry about spelling) early on before getting diagnosed.
My eye doc should had seen the optic damage as a red flag for at least something like MS. I kept telling him about the symptoms.
I guess because I can see the problems I have aren’t considered bad.
AnonymousOctober 28, 2009 at 7:47 pm
[b]tge Problems You Describe Are So Identical To Mine. Cidp Is So Able To Have Problems Identical To Other Diseases That It Gives Rise To Others Telling You To Get Checked For Other Things.
I, Too, Have Been Diagnosed With Sjorgens Disease Before The Cidp, Attack. I Do Take Synthroid. Thanks So Much.
AnonymousNovember 4, 2009 at 10:30 pm
Hi everyone, wanted to give update. I do have glaucoma, it is open angle
and the dr. is currently treating it with Xlantan, in both eyes now. Darn, just
when I thought I was getting better. Scheduled for my next Ivig in a couple
of weeks, think I’ll try the half dose w/benedryl and see if that takes care of
the rash. Man, it was bad!! I did get into the dr. and she said it definately was allergic reaction. Put me on prednizone and it did clear up in 3 days.
I keep reading the forums and I’m wondering how many of you have had a second opinion? I haven’t had a MRI for about 3 years. The last time was
when I had a very loud pulsating sound in my right ear. It drove me nuts
for about 6 months and would even make me nauseated. I had a EEG on my
head too then but my new neurologist hasn’t done much testing except for
blood test and a nerve conduction on my right arm and hand. I like her alot
and don’t want to switch …. should I ask her to perform more test?? I hate
test and don’t want them if I don’t need them. Any suggestions? Thanks
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