I learned a couple of things today that might be helpful to some of you in similar circumstances.
The ENT doc doesn't think either Plaq. or MTX caused the loud ringing in my ear recently, since I've already been on the meds for 6 months. He thinks it's best to continue RA drugs to help protect the ears from AI inner ear disease. In my case, there's only one ear left to save but I'm staying on the drugs, as advised. He and the RD both think the ringing is related to AI issues. The ringing itself (and all forms of tinnitus) does not CAUSE deafness and having it doesn't necessarily mean deafness is the end result, but it does mean there's been some damage. He said if I ever have ringing that lasts all day, into the next, take the predisone the RD doctor gave me for an emergency hearing loss. This is where the ENT doc differs from the RD. The RD said to take the pred. if I lose the hearing in my good ear altogether. Please take note, those of you who have a lot of tinnitus in your ears. It might be a good idea to talk to your ENT about your AI disease and what you can do to ensure your ears are not affected or at least mention it to your RD at your next visit.
Anyway, I don't think I accomplished much except to confirm the RD's advice to stay on the meds and also to learn that I have a small additional hearing loss in my good ear. It just gets better and better.
The ENT asked me an odd question..."Have you accepted the fact that you have an incurable disease that medicine may not be able to fully control?" Where did THAT come from? I told him, yeah, I've accepted it; I don't have much of a choice. Bummer.
Oh, I forgot. He also confirmed what a couple of you have said, that is, the difficulty I sometimes have swallowing can be because of the swelling/stiffness/inflammation of the AI disease. You guys are good, you know your stuff.
Sorry about your ears, Jesse. At least it is not the meds... always a good thing.
Jesse, please don't accept his pronouncement. There are people that get remission and cured every day.
Why not you? Why not any of us?
Hugs,
Pip
P.S. Did you have your old records for him?
AI inner ear disease? Learn something new everyday. Jesse, sorry you have to go through this. I'll vote for remission for all.Yes, Pip I had my records and he believes it was a virus that deafened the left ear but the right ear may be aggravated by the AI issue. I'm hopeful these awful meds will keep the right ear healthy, as much as possible.
jesse, i'm sorry that your dealing with this. i don't have any real advise but i wanted to give you some support. i have a few friends who are deaf in one ear or both due to viral infection- i met them after it happened. i hope things start to look up soon, i know it is a tough situation to deal with. i'll keep you in my thoughts.Sorry to be a pest, but did you ask him specifically about the hair? Or the pics?
Pip
Thanks, Jesse for this great information. It is always good to learn new things and try and protect ourselves as much as possible for extra damage.Thanks for the kind words, Jessica. I admit I'm running scared with the new hearing loss and last night I had some more ringing, though not nearly as bad as previously. I just feel like every time my ear rings it means I'm that much closer to becoming totally deaf. I've been told that I had a great attitude about my prior hearing loss and my UCTD diagnosis, but total deafness would be a very difficult pill for me to swallow and I'm not sure if I'd be able to ward off a major depression. I'm hoping it never comes to that.
Pip, I'm sorry, I'm not sure what you're referring to. Blame it on the MTX fog that often envelopes me. By pics do you mean the MRI films? He didn't even want to see the MRI reports or blood work, just the hearing tests. By the hair, the only thing I can think of you might mean is the problems I've had with hair coloring since on these meds, but that can't be what you mean and I'm not even sure the meds are the reason. Again, forgive my poor memory. What is your question about the hair?
Cordelia, I'm glad you've found something useful from this information. I know I've learned some very valuable things here that I might not have learned for a very long time, if at all. Please tell me, what kind of ear pain do you have? Is it within the ear or is the nerves around the outer edges of it? I've gotten the outer edge nerve pain and I've often wondered if any others get that and if it's RA related, as I think it may be. And yes, please be sure to mention anything unusual to your RD. I'm learning more and more that this disease manifests itself in so many different ways that nothing can be ignored or overlooked. A lesson for us all here.
I apologize for not referring to each person's post individually. I hope you know how much I appreciate the time you all put into helping me and calming my nerves. It helps a great deal.
Sweetie,
On the thread where you were first so scared there was a connection to AI diseases and the meds we take to suppress our symptoms or antibiotics. In the research there appears to be hope that if the hair folicles are damaged by autoimmune reactions it might be possible to repair. It's why I wanted you to get your own records and review it yourself. No, you're not a doc, but if this bozo "didn't even want to see the MRI reports or blood work, just the hearing tests" then you are no better off knowledge-wise than when you were going thru this years ago.
Not to be a jerk or anything...but if this were me, I'd get those records and look them over with a fine-tooth comb (brain fog or not :-). What exactly happened years ago may influence your hearing future.
Hugs,
Pip
Yes, now I understand. I was able bring the MRI reports, films, blood work and hearing tests, but never was able to find the ENT who had treated me years ago. I seriously doubt there was any mention of hair follicles anyway. He and the audiologist considered it a simple case of virus-induced hearing loss once the MRI came back clear. Is the hair folicle angle something that an ENT would be able to see/determine at this point? He did look in my ears and put a probe down my throat and asked some questions, but the only thing he said about hair folicles is that ringing means they are damaged. Assuming I still can't find the old ENT or that there's no specific folicle info there, as I believe, what do you think my next step should be? I'll call the ENT if there's still more to do. The only thing he suggested for the tinnitus was to take Xanax (sp?). Apparently it helps the brain ignore the noise, but I'm at the point right now where I can pretty much ignore the left ear noise anyway and would rather not add any more meds to the mix. There is still no procedure or hearing aide that can help, in his opinion. Thanks for your help, Pip.Ok, if my memory serves, you went in after the hearing loss and they put you on steroids and tested you. Correct? I thought you said they were looking in the ear? If that's right, and they took pictures, then the pics should show (along with the notes) what they found. It could be one of 3 things. I only remember 2 (so eventually I got to find your old post). One form of AI hearing loss attacks the choclea (spelling?) and I'm assuming it's the same as the joints - the bone/cartiledge gets destroyed. I doubt they can do anything about that except an implant. The second form is something that attacks the hair folicles. If that's what's happening - then there is a chance that some of the newer research linking infection within the hair follicle means there is a possibility it can be stopped and possibly reversed.
But first you have to find out exactly what they found.
Please, call the hospital where this all happened and ask to be transferred to their records division. Tell them you are requesting your records from dates X to Y and you want them all. The notes, the MRI's, the audiologists reports - everything. Fill out the paperwork, send it to them, and check back if you haven't gotten it in 2 weeks. I'm still waiting on some from the beginning of this whole RA thing for me! When it arrives, read it. If it doesn't spell out exactly what they think happened, you need to find a doc willing to go in an look again. Maybe those researchers on the first thread.
The fact that this guy said 'ringing indicates hearing loss' means it's probably the follicle. That gives you hope.
I'll help.
Pip
The ringing/folicle connection may be hopeful for my right ear, which is why he wants me to stay on the RA meds and use the prednisone the RD doctor gave me if the ringing goes on too long. But as for the left ear, the loss was sudden, went out on a Friday morning, came back 20 minutes later, went out 3:00 that afternoon and never came back. According to the ENT and my research, AI inner ear disease, which is rare, is a much slower process. The virus type is sudden onset, like mine. I was not seen at a hospital. The loss happened on a Friday, and I saw my PCP that Sat. morning in his office. He gave me something, forgot what, I think it was for congestion, but when it was no better Monday he said go to the ENT. I saw the ENT that same Monday afternoon and started the pred. immediately, but apparently it was too late. I got a second and third opinion, all at the doctors' offices and they all concurred. The only thing that may have helped, that I didn't get, was acyclovir. There's a theory a herpes type virus may be involved too. This angered me that I was never given that by the ENT, but my PCP said by the time I saw the ENT it was probably too late anyway. I have no hard feelings against the PCP who first treated me. How could he know it was so serious and not just some sort of congestion? But I sure do wish I knew there was such a thing as virus/sudden hearing loss. I would have been to an ENT doc. or the ER within hours instead of days. At that point it might have made some difference.
I'm at a loss how I can locate my old doctor who has either retired or disappeared. I do know, however, no pictures were taken of the inside of my ear. I guess when he didn't see any obstruction he assumed a virus. Apparently, my current ENT doesn't think there's anything to be done at this late date either and that all I can do is try to save the good, right ear.
Thank you so much for the interest you've taken in my tale of woe. How I wish there was something to be done for the deaf ear and I so very much appreciate your attempts to help me find an answer.