Comments on my life and meniere's disease: Meniere’s stories about initial doctor’s visits

Anonymous, it is possible to have a light case, be...

2011-03-28T18:07:36.204-07:00

Anonymous, it is possible to have a light case, because every case of Meniere's is different. It's part of what makes it so hard to diagnose and treat this insane disease.

For the same reason, no one can tell you definitively whether you might go deaf, in one ear or both, or when. My hearing loss was very sudden... it happened all in one year after I'd had Meniere's for nearly 10 years, on and off. For some reason, the symptoms increased 100-fold in 2010, and by the end of the year I'd lost most of the hearing in my left ear.

I'm sorry you are so afraid... I understand the feeling perfectly. I spent all of last year terrified. This year, after all kinds of medication and treatment, including a surgery, I still have some dizziness, but at least the terror is gone.

It's tough; there's no doubt about that. But finding a good doctor helps enormously. You can see from the posts above that there's a wide range of doctor experiences out there, and not every doctor knows or cares about Meniere's. Find a good ENT who has a lot of Meniere's experience. And keep coming back here, because there are plenty of stories and some very good support on this blog.

I agree that it would be helpful for someone to get more of the stories out there. I've actually considered writing a book about Meniere's from the patients' point of view. Maybe it's not such a bad idea, huh?

I have just been diagnosed with MD and am only 28....

2011-03-28T10:49:07.900-07:00

I have just been diagnosed with MD and am only 28. I am terrified of the progression timeline, and afraid of going deaf. I cant find anything on th internet that alludes to a progressive timeline for hearing loss. I dont know what to expect... 10 years, 20years? I have only had a few episodes that started this year, so I am keeping my fingers crossed that I have a light case. Is it even possible to have a "light case"? I wish there was more answers.
All I find are a long list of varied symptoms and classic cases. What I find more helpful is reading about real people and their stories. As I read all the different stories, It helps me understand where I might be. There just needs to be more collection of these stories out there!

I am so glad that meniere's didn't stop yo...

2010-06-07T16:02:23.760-07:00

I am so glad that meniere's didn't stop you from doing what you wanted to do in life. You are a great example for all of us!
Stay in touch and let us know how you are doing.
David

I first started getting dizzy when I was 8. My ENT...

2010-06-07T12:04:36.318-07:00

I first started getting dizzy when I was 8. My ENT took 10 years to tell me there was nothing wrong with me. Then I had to move back home from uni and commute because things got really bad, so I insisted on being referred to a doctor in London I'd heard about. She diagnosed me in an afternoon! I'm now 20 and may be part deaf but I'm graduating with a music degree :)

I hate that you had such a bad experience with the...

2010-02-10T18:20:02.783-08:00

I hate that you had such a bad experience with the first doctor that you saw. Hopefully things will get better soon.
Stay in touch
David

My American story: I'm diagnozed with MD for ...

2010-02-10T06:35:48.026-08:00

My American story:

I'm diagnozed with MD for over 10 years by a neurologist in Belgium, and well treated over the years.
Moving to the USA, I first contacted an Neurologist (to get prescriptions) and his response was "Now that you live in a Civilized country we should re-examen you and get the right diagose, because I think you can't have MD"
Needless to say that I never walked into that office again.

Now I see a wonderfull ENT, he is very helpfull and wants to go with whatever I did over the past 10 years to stay good.

P.

Hi Jason, Exchanging links would be fine but I don...

2010-02-05T19:13:04.796-08:00

Hi Jason,
Exchanging links would be fine but I don't think that I want to do any reviews right now.
I'll post your link in a couple of days.
David

This proves how much we can trust a doctors intial...

2010-02-05T12:34:11.348-08:00

This proves how much we can trust a doctors intial diagnosis right. Specialists tenc to do a little better than this.

On a personal note, I am interested in exchanging links with you from my medical blog (medicalnoise.wordpress.com) over to your medical. Let me know how you want to be linked and I can get you listed in a few days.

On a business note, I know the owner over at JRS Medical and was wondering if they could get listed in this blog under a category like Medical Resources or something like that for a fee? I’m sure they would be open to a blog post reviewing their website or some of their products too? They can pay you by PayPal for your trouble.

Let me know if you’re interested in either. Look forward to hearing back from you.

--
Jason
(long time diabetic)
Let's practice love, acceptance, & forgiveness

Hi Jeff, I thought about doing that but it would b...

2010-02-04T18:22:51.212-08:00

Hi Jeff,
I thought about doing that but it would be hard to control the spam.
David

David, Some of your posts seem to develop over ti...

2010-02-04T11:00:08.503-08:00

David,

Some of your posts seem to develop over time into almost discussion threads. Is there any way you can add something to the sidebar like 'Most commented posts' - that way we could all automatically see where on the site things are happening.