I've been debating whether to bring this up or not. Mostly, I've been trying to ignore this new fear I have about my illness. As some of you know, I am deaf in my left ear which may or may not be a result of my A/I disease. It happened several years ago and may just be the result of a virus, they just don't know for sure. Anyway, I've been having some ringing problems with my good ear and it's been determined there is some hearing loss there now. This, three doctors believe is the disease at work. It never occurred to me until this happened that my hearing could be affected. And now I'm starting to worry about my eyesight because of the chronic problems I have on the left side of my body. The tense/tired feeling on the left side of my face also envelops my eye and I'm starting to think that my vision could also be affected some day. I'm almost afraid to ask this but.....have any of you had permanent vision problems and/or loss as a result of your disease? Do you know why it happened? Was there anything that could have been done to prevent it? Just had an eye exam in October and I've developed steroid induced bilateral cataracts. I've had 3 RX changes for glasses in the last 4 years. Lindy
I haven't, but I understand your fear. Poor eyesight runs rampant in my family. Matter of fact....lemmie think real quick....Only myself, Jessica, and our cousin Cody DON'T have glasses. Every single other blood relative has them.
My mom took me to the eye doctor VERY regularly, I think she had the same fears. I haven't seen an eye doctor in several years now, and the second I get a little blur, I start to worry.
Your best bet, is to start monitoring. Especially if they believe the disease is hitting your ears. That's already proving that it doesn't like to be a "normal" disease. Your eyes probably are at risk. (Not to scare you, just....it is what it is)
If you get yourself checked regularly, I see no reason why it can't be caught early and treated.
*hugs* Sometimes this stuff is really scary, isn't it???
I'm sure you know this already but with Plaquenil use there is a risk of eye problems. That is why most RD's require a eye exam be done either once or twice a year while using it.What meds are you on? I'm on Minocin and my eyesight is getting better...but I thought that was just the disease reversing. Like it started getting worse while I was getting diagnosed and it's getting better now. Does that make sense?
Jesse, I am not really trying to jump on the band wagon here. I have posted before about having a ringing in my ears, or I should say it almost sounds like crickets. This has been going on for a little while had sinus surgury thought it would help it did'nt. I read somewhere it had something to do with inflamation. Now back to the eyes my have gotten worse not sure why. I've been getting mucus out of my left eye. I was on antibiotic eye drops ,but didn't do much good. You talk about having more problems on your left side, thats weird because when I first got D/X with FM it was mostly on my left side. I am rambling ,but I just find it strange.well if you are having vision problems and are on plaquenil then you should definitely see an eye dr. bc i think that if you are on plaquenil and on it for a long time or at a high dose its quite a concern for your vision-go to the dr...now! hope its all goodRight now I don't have any problems with my vision except for a blurry "feeling" of the left eye on occasion and sometimes it tears, but my vision is fine. In fact, I had Lasik surgery six months ago with my RD's blessing and I'm thrilled with the results. I would be terribly disappointed if I had to go back to distance glasses, but that's not what worries me. Having to wear glasses to see clearly is no big deal, I'm worried about blindness. I've seen an opthomologist for the Lasik several times in the last six months. He's also aware of the A/I disease and cleared me for the surgery beforehand. He also did the baseline retinal exam for the Plaquenil issue, so I'm really keeping on top of it, you can be sure of that. I'll see him soon for another post-op check and will ask him specifically about the threat to my eyesight, but I wanted to know if any of you have experienced a serious problem. So far it seems not, which is very encouraging. I have read that A/I related inflammation can cause blindness, which is irreversible. The fact that no one here seems affected that way is comforting and makes me think it's very rare. But I can't help picturing myself in ten years totally deaf and blind in at least one eye if the doctors can't get this under control. I'm not prone to depression, but that could be the clincher for me. Well, enough of that. There's no point in worrying too much about something that hasn't happened yet. I just have to keep on top of it and hope for the best.
That's interesting that near-sightedness can get better from the disease process. Maybe I should have waited instead of getting the Lasik?
Apeanut, I'd high-tail it back to the doctor just to be on the safe side if you haven't seen a specialist in a while. That mucos concerns me since you have inflammation issues too. I'm assuming you feel inflammation in your face and near your eye(s) too. My RD will be increasing my meds as suggested by the neuro who thinks the disease is not under control. The ear ringing is what makes him (and the RD and the ENT doc) think that. You seem to have similar issues. Those cricket sounds are just another form of tinnitus, which is often a sign of hearing loss. I'm not trying to scare you, just give you a heads up so you can fight this off if it is in fact something serious that needs better control. Make sure your doctor knows everything that's going on.
And Katie, thanks for the hug. I needed that. And please go to the doctor to have your vision checked. Please???
Who knows with any of this stuff!
Pip
I did research on this surgery about 2 years ago. Apparently 10% do not 'work it out' and have vision problems, vertigo, etc. for the rest of their lives. I figured my brains were addled enough.
:-)
Pip
Hi Jesse
I am sorry to hear about your ears. About a year ago I started having trouble with my ears. Every time I went in they said something along the line of pressure and sinus. Give me meds. It would work but within a week it was back. So when it hurts too much along with the snap crackle sounds I go back in get something and it's okay for a bit. *sigh* It is never an infection.
About my eyes as of two years ago I went from never needing glasses to needing them and bifocals too. I haven't bought them yet but will whenever we get caught up on things. Maybe I will stop misjudging stuff. I hate hate the thought of glasses along with everything else. But hey what ya gonna do ya know.
Ive worn glasses since I was 15, needed them since I was about 10. I have astigmatism, which just keeps progressing. Now I have very dry eye due to Sjogrens, and by the end of the day I'm darn near blind.
Everything is so blurry when I get tired and drops just make it blurrier AND more painful..why does it hurt so much to put eyedrops in? Man I HATE them.
Jesse, so sorry the trouble with your ears has continued, and now there are new worries too. The good news is that my eyes are the one thing on my whole entire body that actually work perfectly.
The blindness from AI can happen, but it is rare. Unfortunately, my stepson seems to be the rare case. He has Stevens-Johnson Syndrome, and has just lost most of the vision in his left eye due to inflammation. He has been seeing a specialist in Boston who works on nothing but eyes, so we are still hoping to preserve the vision in the right eye, and maybe even recover some in the left, although it sounds like he would need a cornea implant for that, and right now he's not even a candidate.
So the moral of my two stories is that it does happen but it is rare, so don't panic but do get it checked as soon as possible and then regularly after that.
Innerglow, your poor stepson! I'm assuming he's young and that makes it so much worse. I've had nearly 56 good years so far, so it would be much less of a problem for me to totally lose my hearing and maybe the sight of my left eye. I would be devastated, of course, but to hear of a young person dealing with these illnesses just breaks my heart. It's like they never even had a chance to live a normal life and that is so sad. My heart goes out to them all.
Yes, based on what I'm reading here the blindness issue is rare, but one never knows if he/she is going to be that rare unlucky one. It doesn't really matter how rare something is if you're the one that "got" it. I see the RD in a few days and I'll see what he's going to do, now that he has the neuro's report and recommendations. I'm sure he'll up the meds, but I won't fight it.
Hi Jesse,
I don't know much about AI and vision problems, but I know vasculitis and some of the meds we are on can cause vision problems. My neuro recommended I see an opthomolagist. My vision has changed greatly in the last year, and I have had to buy new glasses twice in the last six months. The opthamologist said he never had anyone my age with such a strong bifocal rx before. He felt meds were partly the cause and that as the dose changes, my vision is changing. He advised me to keep my old glasses in case my vision improves later when meds are reduced. I wish I knew more specifics but that is all I remember about it. The good news was that my insurance picked up the cost of the exam because of the RA and vasculitis dx.
I am really glad you posted about your ears because mine have been ringing for years and I have never told my dr. My brother was like this and did go suddenly nerve deaf in one ear.
Laker
Yikes, yes Laker, get your ears checked. Though I have to say, other than getting your disease under control, if that's what's causing your ringing as well, there's nothing else to be done. I have no good information on how to protect the ears otherwise. I asked the ENT doc this specifically and he just said the usual, no loud noises, avoid salt to minimize the ringing and if it's really a problem, start an antidepressant. I guess that's so I'll be so mellow that I don't care if my ears are ringing. I said no thanks to more drugs for now since I know more AI drugs are coming. Have you determined for sure what has caused the ringing? That's the first step. Since your brother had a similar issue I wonder if it's a congenital trait. A neighbor just recently got two hearing aids because her ringing and loss got progressively worse over the years, but it's totally congenital. There was nothing she could do to prevent it. Fortunately, that type of problem responds very well to hearing aids and she's doing great. Also, it's a very slow process. She's in her late 60s now and just got the hearing aids.
I see the opthomologist on Tuesday. He knows all about the AI but I never discussed the vasculitis specifically. It's time to now I guess.
Geeze
Not sure if this really relates... but I was just talking to hubby about this yesterday about my eye sight sucking so bad.
I had 20/20 vision throughtout childhood. My mother took me to get my eyes checked every year, because that is what the Dr's who DXed me told her to do.
I had 20/20 vision until I had my daughter at 19. Yep throughout my whole pregnancy no vision problems and then almost a year after she was born, my vision started getting bad. Which is around the same time my JRA started getting worse and worse as well.
Now that J/RA is doing worse, my vision is getting even more blurry. I just got a new pair of glasses less than a couple of years ago. BUT it is time to make a visit to the eye DR again, because even with my glasses on I have to squint to read things and I still can not see stuff that far away again with my glasses on.
The pair of lenses I have in my glasses now were actually obsolete 6 months after I had them, because I noticed I started having trouble reading things from a distance I was able to 6 months prior with the same lenses.
Going to Dr's is never ending, unless I just decide like I have before... to just deal with it. my ear started with ringing, it is totally deaf now except for the ringing, the left ear, many doctors many treatments i truly believe it was the arthritis or the meds. now my left eye has a blind spot in it. i do take plaquenil, the ear and eye all started when i started remicade but the doctors don't believe there is any connection but i know there is.I have had allergies and problems with my eyes since I was a toddler. My mom said when I was not quite two, I had my tear ducts opened. In all of my school pictures my eyes are always watery and my nose is running. No I have problems too except I go from one extreme to the next. My minute eyes and nose will be running and the next dry as the desert. I have had lots of sinus infections, ear infections, strept throat, pneumonia,, pleurisy, and pericarditis before I knew I had ra.