[koilover512]

So, I am in the process of being diagnosed with a second condition called Meniere's Disease. Has anyone else had this issue as well? I am wanting to see if there is any relation to MG and Meniere's.

[art chick]

They thought I had Meniere's but they revoked that diagnosis when they found out I had MG so that is interesting they are looking at both for you. Does your ENT know about your MG? I have severe and profound hearing loss in both ears and wear hearing aids. The hearing dropped off dramatically just before my first MG crisis and then just got progressively worse from there. The hearing has stabilized now for several months first with lots of prednisone (now only at 7.5mg per day) and then IVIG( 5 days every 3 weeks). There is some evidence that immunomodulators can help my ENT says. They just found out that there may be more than one cause to my loss: sensorineural, autoimmune (MG), and now cochlear otosclerosis.

I have tinnitus that also started at the exact same time of that big drop and has continued 24/7 for the last almost 5 years now. Vertigo started about 3 months before hearing loss and tinnitus began but I have it VERY seldom since MG treatment started one year ago. So, I really think that they are connected somehow. When I am better, the vertigo is maybe 1x every 3 months. I still have dizziness but I am on meds that can cause dizziness and otosclerosis can cause it too so not sure about that.

I have been told that to have hearing loss and MG is very rare but read that acetylcholine is the neurotransmitter of the hearing system so it does make sense. You can google "cochlear, myasthenia, hearing loss" and get the article.

Let me know what your symptoms are, k? Both with Meniere's and with MG...debra

[koilover512]

With the MG I am in remission. I was diagnosed with MG back in November of 2008. Back then I had about every symptom in the book. To start treatment on me I had to receive IVIG and a hospital stay because of my lungs weakening. From there I was on prednisone for a year. I also have been taking mestinon. I haven’t taken medication for my MG for about two to three weeks now. I was skating with the Texas Roller Derby Girls Rec Team for a bit until my ear started to bother me.
With the Meniere’s I haven’t been diagnosed yet. It all started with getting vertigo spells. I went to my family doctor and she said my left ear drum was swollen and put me on a regimen of prednisone for a week. The swelling went down and I was feeling really great for about a week. Then the vertigo started all over again. I went back to my family doctor and she referred me to an ENT. I am going to the Austin Ear Clinic. They did some testing for hearing and making sure your ear drum responds to noise. My hearing was fine. The ENT did a balance test and I explained my symptoms. He believes it to be Menieres. I did tell him about having MG. It didn’t raise any flags for him. We are doing the further testing just to confirm that it is Meniere’s. I recently had an MRI, CT, and a CT with contrast done. I will go for more testing at the end of July. When I go into a vertigo spell the first thing is I feel a weird pressure in my ear, then the room will start spinning. Once the vertigo has ended I hear a weird crackling noise. I have compared it to kind of like when you open a soda. The fizzing from the carbonation. Most of the time I just feel like im on a boat. Right now I have just lowered my sodium levels and hope it’s not meniers and just something temporary that will go away. Knowing my luck it wont be so and that sucks. Oh well life goes on right.

[AnnieB3]

There are muscles in the ear too! Hyperacusis, which is a sensitivity to certain frequencies of sounds, can happen in MG due to weakness. How the ear canal functions in receiving sounds can be affected by weak muscles.

Be aware of what sounds you encounter and when the symptoms get worse. Do you have any fans running? Is it worse after being in the car? There are so many factors, including things like hypoglycemia or other glucose issues, that can affect the ears.

Koilover, What do you mean by lowering your sodium levels? Do you mean that you've lowered the amount of sodium you eat? And the "swollen" ear drum . . . did they check any inflammatory markers on you? Do you have any signs of an infection? Do you clench your jaw, like when you sleep? What happens when you open your jaw widely? Is there a crackling? That could be your jaw.

I suggest asking your primary doctor for a metabolic panel to see what your electrolytes are up to, what your glucose is, etc. It should be a first thing in the morning/fasting lab to be accurate. Also, have they checked your body over for any signs of edema? Just in case you have "swelling" in other areas. Edema has other causes.

MG can cause all kinds of problems. But don't assume it's the MG.

Annie

[koilover512]

The vertigo isn’t triggered by sound but more by movement. I am noticing certain ways I move my head can trigger a vertigo spell. That is a sign of an inner ear issue. When I said I was lowering my sodium level I meant by lowering my sodium intake. Lowering your sodium intake to around 1500mg a day can help with the vertigo. My doctor is the one who told me she believed I had Meniere’s. I have no sign of infection which can be cancelled out with not having a fever. Right now we are still in the testing process. If they can positively conclude that I have Meniere’s then I will seek what treatment I can. But if not then I will look for other option. I will talk to me neuro to see what she thinks about Mg causing vertigo.