There were lots of great comments on the post Amazing statistic about Meniere’s disease.
Anonymous said...
You are right! My first ENT did the same thing, told me I had to live with it. While my kids were waiting at school for over an hour because mum couldn't get out of bed or down the stairs to pick them up. The ENT was even surprised when I said I had some questions about gent-injections or diets or other medications (I had read about on the web). And of course she didn't answer any of the questions.
Then I asked her how many M-patients she had. The answer (after soms calculations) was: five.
Jeff said...
I think the spontaneous remissions also contribute to the lack of visibility. I've spoken to several people who have clearly had Meniere's or a very similar condition, but did not follow all the way through to diagnosis because it just went away.
Possibly also the lack of pain, swelling and so on also makes occasional sufferers think it's just something to do with stress, allergy, cold, stomach upset or whatever; if there was pain or swelling I think they'd see the doctor sooner rather than waiting for the episode to pass.
Nicki said...
i was told by the first ENT i saw when i was 25 years old that "i would grow out of it." what??? i was so mad. he offered me exactly nothing in the way of treatment.
and you are dead on when you talk about people not getting this disease because we look like we're okay most of the time. i've lost friendships due to that misconception.
i'm so grateful to have such a great doctor now who believes in me and my disease.
bigdaddythinks said...
I have to chime in here. The ENT I saw gave me the standard treatment of diuretics, low-sodium diet, no caffeine, learn to live with it. That part about "learning to live with it" chaps me still and it was a year ago. In 2010 I will be seeking a new provider, one who will work with me. And I'll work my way through providers until I find the right fit. Nicki, I'm sorry you've lost friendships over this. I have been grateful and humbled by the support of my friends and family. I even had a client offer to come get me if I have an attack away from home.
Katey said...
Informing friends n family is key! I am advocating the viral school on this disease. I believe that so far they r the only ones who offer supported answers about Meniere's. It will be 29 years this year that i have had MD. Boy, am i sick of it all. I am in Stage 3 now, so at least the vertigo is not as bad as the first ten years or so. Wishing dizzy-free days to us all! Katey
Anonymous said...
I was told by my GP that my Meniere's would burn out in five years, i had already been suffering 9 years!!!
Thanks everybody I appreciate your very helpful and informative comments.
David
Wednesday, February 3, 2010
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10 comments:
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.
Hi Jeff,
I thought about doing that but it would be hard to control the spam.
David
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 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
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.
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
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 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 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!
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?
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