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    Old 11-13-2013, 07:40 AM   #1
    SicknTired777
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    Newbie here with a question looking for answers

    Good morning all,

    I hope this post finds you all feeling well today. I am an almost 34 year old woman with a diagnosis of undifferentiated connective tissue disease. I was 1st giving the diagnosis of lupus, but after a negative lupus specific test I was given the undifferentiated connective tissue disease. I have chronic fatigue, polymyalgias, swollen hot joints especially in hands, hair falls out sometimes, butterfly rash in the sun, and one time after being exposed to strep (when I was initially diagnosed) I broke out in a plague like rash from head to toe. About a week ago my hearing was totally normal and then I lost total hearing in my right ear. I can't even hear a tuning fork. The doctor said he believes it is sensorineural hearing loss and sent me for a brain MRI. Has anyone ever lost their hearing from an auto-immune disease? I was exposed to a sick child again right before this happened. Could this have caused an attack on my ear? Has anyone been successful in getting their hearing back after this kind of diagnosis? I was initially put on a Medrol Dosepak, but now will be taking prednisone 10 mg once a day for 30 days. I am scared that I won't ever be able to hear normally.

    Thank you for your time.

     
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    Old 11-13-2013, 07:48 AM   #2
    solofelix
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    Re: Newbie here with a question looking for answers

    Hi,
    Welcome to Healthboards, it's always good to welcome a new member,
    I'm sure you will get some replies soon,
    Best Wishes,

    Solofelix.

     
    Old 11-13-2013, 07:51 AM   #3
    SicknTired777
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    Re: Newbie here with a question looking for answers

    Quote:
    Originally Posted by solofelix View Post
    Hi,
    Welcome to Healthboards, it's always good to welcome a new member,
    I'm sure you will get some replies soon,
    Best Wishes,

    Solofelix.
    Thank you for the welcome.

     
    Old 11-13-2013, 07:57 AM   #4
    ladybud
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    Re: Newbie here with a question looking for answers

    Welcome to the boards. Hearing loss can occur uncommonly in CTD, and in your case, may be viral since you were exposed to a sick child. Viral episodes are usually recovered within 2-3 weeks. The other type that can occur is from the autoimmune disease itself It can be chronic, but in either case, Prednisone usually helps. The MRI is a good idea just to rule out something wrong with the auditory nerve. It is very scary to suddenly have your hearing lost, but hopefully it will return to normal fairly quickly with treatment. Good luck and keep us posted on your progress!

     
    Old 11-13-2013, 08:03 AM   #5
    SicknTired777
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    Re: Newbie here with a question looking for answers

    Quote:
    Originally Posted by ladybud View Post
    Welcome to the boards. Hearing loss can occur uncommonly in CTD, and in your case, may be viral since you were exposed to a sick child. Viral episodes are usually recovered within 2-3 weeks. The other type that can occur is from the autoimmune disease itself It can be chronic, but in either case, Prednisone usually helps. The MRI is a good idea just to rule out something wrong with the auditory nerve. It is very scary to suddenly have your hearing lost, but hopefully it will return to normal fairly quickly with treatment. Good luck and keep us posted on your progress!
    Thank you for the response. The strange thing is, I have had no symptoms of a cold virus or anything. No stuffiness, sneezing, cough, congestion, fever, absolutely NOTHING. Just fine one second and deaf in the ear the next. I am praying that my hearing is restored 100%. I will keep you updated.

     
    Old 11-15-2013, 10:07 AM   #6
    SicknTired777
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    Re: Newbie here with a question looking for answers

    Well, its been 1 week since the onset of total hearing loss. I have completed the steroid Dosepak and have started on 10 mg a day for 20 days of prednisone. I have also taken 10,500 mg of amoxicillin which the emergency room doctor put me on just to be safe. I still have not regained any hearing in my right ear. I have not heard back on my MRI results yet. I am so scared that I will never get hearing back in that ear and really believe this is related to my lupus/undifferentiated connective tissue disease. The doctor really believes it is sensorineural hearing loss and not conductive. I am uninsured and no ENT doctors around here will take a self pay. Even if I found one that did, I don't have money for an appointment. I don't know where to turn or what to do at this point other than lots of praying.

     
    Old 11-17-2013, 08:14 PM   #7
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    Re: Newbie here with a question looking for answers

    I understand about the no insurance and the hearing loss. I'm in a similar situation myself. I would call around to local hospitals and see if they have an ent department. Those places use c-cap and go by income for payment. You could also try a large city state university hospital. I would hope that it would be better than the one where I live. The state university has it's own hospital and ent department. They are booked over two months in advance. They have one ent doctor that sees uninsured low income people. What I found out is this doctor has two sanctions on her medical record for stimulant use and is currently on probation as I type this. I might be able to dismiss one sanction but two separate instances. You know there has to be something to it. I think the university doesn't care about sticking a problem doctor on non-insurance patients like myself. I've wanted to report this to the local newspaper or television station and bring that thought up. I'm sure I wouldn't be the only one thinking the same thing. Anyone reading this please comment. Am I being to prejudice? I don't want a doctor who is high operating on my ear. Sorry. I was doing a search on the doctor when it popped up. Any doctor that I see in the future I am going to thoroughly check out. I would recommend that to anyone. I don't want to be seen by this woman. Should I raise he.. about her record and ask to be seen by someone else? Please let me know what you think. Anyone else out there let me know as well. The question is, should people with no insurance get handed down second rate doctors? Good luck to the both of us.

     
    Old 11-22-2013, 09:48 AM   #8
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    Re: Newbie here with a question looking for answers

    Quote:
    Originally Posted by Narue View Post
    I understand about the no insurance and the hearing loss. I'm in a similar situation myself. I would call around to local hospitals and see if they have an ent department. Those places use c-cap and go by income for payment. You could also try a large city state university hospital. I would hope that it would be better than the one where I live. The state university has it's own hospital and ent department. They are booked over two months in advance. They have one ent doctor that sees uninsured low income people. What I found out is this doctor has two sanctions on her medical record for stimulant use and is currently on probation as I type this. I might be able to dismiss one sanction but two separate instances. You know there has to be something to it. I think the university doesn't care about sticking a problem doctor on non-insurance patients like myself. I've wanted to report this to the local newspaper or television station and bring that thought up. I'm sure I wouldn't be the only one thinking the same thing. Anyone reading this please comment. Am I being to prejudice? I don't want a doctor who is high operating on my ear. Sorry. I was doing a search on the doctor when it popped up. Any doctor that I see in the future I am going to thoroughly check out. I would recommend that to anyone. I don't want to be seen by this woman. Should I raise he.. about her record and ask to be seen by someone else? Please let me know what you think. Anyone else out there let me know as well. The question is, should people with no insurance get handed down second rate doctors? Good luck to the both of us.
    I will say a prayer that you get the proper care that you need also. I don't blame you for not wanting a high doctor operating on your ear, but you'd probably be surprised how many high doctors are walking around that we don't know about. The medical profession has a very high incidence of drug use and abuse. Sometimes in order to reinstate a medical license the doctor who was using drugs has to complete a rehabilitation program successfully and pass random drug screening. Hopefully this is the case with that doctor. I would ask to see someone else if at all possible.

    I found a doctor that would see me who is an excellent doctor and did my sons operation, but it will cost $200 plus to see him. Hopefully he will let me make payments because I don't have any extra money to spend. I still have not regained my hearing and it has been 2 weeks. I completed the antibiotics and have a few more days on 10 mg of prednisone daily. I am hoping the doctor will help me find a way to get it back. My MRI was negative and there was no fluid, wax, tumor, or anything like that.

     
    Old 11-22-2013, 10:55 AM   #9
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    Re: Newbie here with a question looking for answers

    I think it is important to consider all possibilities and avoid rushing to judgment on situations for which you may not have all the facts. It is possible, for example, that the Dr. has a legitimate medical reason for taking stimulants, such as narcolepsy, excessive daytime sleepiness caused by sleep apnea, attention deficit disorder, etc. I would not assume she is abusing them without knowing the facts, which will probably be impossible to obtain. She may actually have better mental clarity on them than off them, so "being high while operating" is an assumption that may be incorrect. I am just playing Devil's advocate here, to point out that things may not always be what they seem. If she is the only Dr. you have access to, I would at least meet with her and see for yourself if she seems to have it together or not. Have you gotten your MRI result back yet? I hope it comes back ok.

     
    Old 11-27-2013, 10:02 AM   #10
    SicknTired777
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    Re: Newbie here with a question looking for answers

    Well, I just got back from the ENT and got some not so good news. It is sensorineural hearing loss caused by my lupus/auto-immune disease. I had an audiogram and he said I have what they call a dead ear with profound loss, to the point a hearing aid wouldn't help. He injected a steroid into my middle ear and said about 10% of people get some hearing back with this so I figured it was worth a try. Please keep me in your prayers.

     
    Old 11-27-2013, 01:09 PM   #11
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    Re: Newbie here with a question looking for answers

    Quote:
    Originally Posted by SicknTired777 View Post
    Well, I just got back from the ENT and got some not so good news. It is sensorineural hearing loss caused by my lupus/auto-immune disease. I had an audiogram and he said I have what they call a dead ear with profound loss, to the point a hearing aid wouldn't help. He injected a steroid into my middle ear and said about 10% of people get some hearing back with this so I figured it was worth a try. Please keep me in your prayers.
    I'm sorry you got such discouraging news! We will hope you are in the 10% who respond to the steroid injection. It seems odd that such severe loss would occur so suddenly. Let us know how you do with the steroid. Hopefully your other ear hears well and you can compensate in time.

     
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