Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I know this has been brought up here a couple of times but I thought I would share me recent experience with this subject as I recently learned that my neural hearing loss has progressed over the last months and now needs to be dealt with.
Just about the time I was Dxd with MG in April of 2013, I had my mandatory Air Force hearing test and at that time the results were pretty darn good.
Since my first and hopefully last major MG crisis last June, I have noticed that my hearing has been going downhill in the months that followed. I spoke with my neurologist and she recomended a hearing test once I was finished with the Rituxan infusions.
Accordingly, last week I went for a hearing test and was pretty shocked at the results. While I knew there must be issues, but I did not expect to have severe / extreme hearing loss across a good part of the hearing range, basically the higher range, with the lower range being somewhat better, but still a significant isuse.
As I discussed the results with my ENT specialist, he mentioned that there has been a few studies over time that have shown that myasthenic patients have a higher likelihood of developing hearing loss as a result of disease activity. Here is a link he directed me to:
http://www.ncbi.nlm.nih.gov/pubmed/16367899
After disuccing the hearing results and given the probability that it most likely will worsen over time, it was suggested that I get setup for hearing aids. Last week I went to the audiologist and was setup and had the Lyric style hearing aids programmed and placed deep in my ear canals right next to the eardrum. I will admit I dont like the thought of having to depend on these for the rest of my life, but I am amazed at how much sound I was missing and how comfortable they are. These are the style that stay in for about 3 months and then are just quickly swapped out. They are on 24/7 and do not need any batteries changed or to be removed except when they are swapped out every 3 months.
The other casue of hearing loss that was mentioned was that various medications we take and are given in hogher doses in the hopital can be quite toxic to our ears. Here is a link to a list of medications that at certian doses can casue hearing loss:
http://www.ata.org/sites/ata.org/files/pdf/Oto_toxic_Drug_Packet_Oct12.pdf
I wonder if others here have noticed hearing loss that might be due to MG?
Joe
Just about the time I was Dxd with MG in April of 2013, I had my mandatory Air Force hearing test and at that time the results were pretty darn good.
Since my first and hopefully last major MG crisis last June, I have noticed that my hearing has been going downhill in the months that followed. I spoke with my neurologist and she recomended a hearing test once I was finished with the Rituxan infusions.
Accordingly, last week I went for a hearing test and was pretty shocked at the results. While I knew there must be issues, but I did not expect to have severe / extreme hearing loss across a good part of the hearing range, basically the higher range, with the lower range being somewhat better, but still a significant isuse.
As I discussed the results with my ENT specialist, he mentioned that there has been a few studies over time that have shown that myasthenic patients have a higher likelihood of developing hearing loss as a result of disease activity. Here is a link he directed me to:
http://www.ncbi.nlm.nih.gov/pubmed/16367899
After disuccing the hearing results and given the probability that it most likely will worsen over time, it was suggested that I get setup for hearing aids. Last week I went to the audiologist and was setup and had the Lyric style hearing aids programmed and placed deep in my ear canals right next to the eardrum. I will admit I dont like the thought of having to depend on these for the rest of my life, but I am amazed at how much sound I was missing and how comfortable they are. These are the style that stay in for about 3 months and then are just quickly swapped out. They are on 24/7 and do not need any batteries changed or to be removed except when they are swapped out every 3 months.
The other casue of hearing loss that was mentioned was that various medications we take and are given in hogher doses in the hopital can be quite toxic to our ears. Here is a link to a list of medications that at certian doses can casue hearing loss:
http://www.ata.org/sites/ata.org/files/pdf/Oto_toxic_Drug_Packet_Oct12.pdf
I wonder if others here have noticed hearing loss that might be due to MG?
Joe
MG can give us double vision, affect our speech and our swallowing. I am not surprised if some experience hearing issues.
Thanks for bringing the group up to speed on this. Take Care. Chris.
My hearing has followed the same path as yours.
Will check the info!
http://www.ncbi.nlm.nih.gov/pubmed/3346597
Good Luck
MG ohio, you bring up a good point the "Bulbar" symptoms are mediated by the cranial nerves that do not travel through the spine, but through the neck and hearing of course is one of the mosre local of the cranial functions. The cochlear is an incredibly sensitive very high nerve density organ that we hear with and it is based on acetylcholine.
Now for the fun part of life with hearing aids. You realize soon that you now have this incredible power of a volume control on life...imagine that, you can turn them way down or off depending on the conversation LOL Or you can turn them way up and have essentially bionic hearing (insert evil laugh) its amazing how many distant conversations I have been able to hear. Of course you cant tell I have hearing aids as they are fully in the ear so no one knows I have this new super power LOL
You see there is an upside once in while in dealing with MG Now I just have to make sure I dont get into to too much trouble, that will be the hard part :-)
Joe