I am wondering how many forum members have other, seemingly unrelated, conditions as well as MD. Exeter University medical school in England has found that there appears to be a link between MD and “immune system disorders and diseases related to the autonomic nervous system, such as Irritable Bowel Syndrome, Crohn’s Disease, and arthritis.”
What do members think about this?
Hi Misti,
In terms of autoimmune disorders, I have fairly diffuse osteoarthritis and chronic interstitial cystitis. When I was a young woman, I had polycystic ovary disease.
I have Factor V Leiden (blood clotting disorder), temporal lobe epilepsy, and was born with a number of congenital disorders of the GU system and bone. Severe motion sickness was a scourge throughout my life, from when I was a very little kid until I was in my late 40's. I also used to fall down a lot when I was young, but my doctors used to say it was due to my height and weight....quite tall and heavy for my age.
I began to experience Depression when I was a teenager, something I've battled for years. A
Sorry....I hit return by mistake!
I began to experience Depression as a teenager, but it was clearly related to growing up with domestic violence and abuse. Later in life, after a number of significant traumas, I was diagnosed with PTSD. I'm dedicated to finding redemption in all of this, and being hit with MD really threw a monkey wrench into my ongoing efforts at therapy.
Interestingly, my congenital deformities and neurological glitches are supposedly due to my mother being on amphetamines for the 9 months she was pregnant with me (Obocells...heavy duty speed). I wonder if that could have contributed in any way to making me a good candidate for MD.
I'm the first person in my family to have MD.
I'll be interested to hear from other members of the forum...I've always been interested in whether motion sickness as a young person, was any kind of predictor.
Take good care,
None apply to me.
Your post was interesting. Has anyone had Bell's Palsy with Meniere's? I had Bell's last summer and the hospital said it was caused by Lyme Disease. .As I reported earlier, my doctor in Philadelphia told me not Lyme's since I have had two tests that were negative for the disease. However what caused the Bell's? From googling, it says that 12% of oeople inflicted with Lyme's have an occurrence with Bell's.
I have jus joined this forum mistibuey because I saw your post. I have just spent hours reading about all the links of other conditions to Meniere's on a website [link removed by moderator]
A real eye opener I can tell you. Loads about the immune system and gut issues. So much I didn't know before and have never been told. I hope my ENT or GP will agree to get me tested for some of these.
Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.
http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts
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Oh, sorry. I didn't read the rules. Anyway, made me look at Meniere's very differently. Interested to see how many people have these other conditions because I think I need to checked for all this. Thank you for informing me moderator.
Hi Misti. Can you provide more details about the Exeter study? A link to it would be greatly appreciated and helpful.
thanks for bringing this to our attention!
Hi J
Girl, you had a rough start in life; it's hard to see how your mother's drug problems would not have had an effect on your growing body when she was pregnant with you. Have you ever looked that up? The effects of that particular drug and if it could create a malformation of the inner ear perhaps?
I have long wondered about severe trauma and how it might set people up for health problems later in life.
My friend also has to deal with PTSD from an horrendously abusive childhood, and it was after several years of therapy, just when she hoped for a better life that she developed all the health problems with CVI and then MD and diabetes.
I wonder about veterans as well - there seems to be several who have posted here. Many have been through so much in their service of their country.
I'm sorry you had so many problems, both with family and with physical health. It seems unfair to have MD on top of it all.
All best wishes - M
Hi again Angela
Thanks for replying
It's good to hear from you again, and really good to know that you have none of those conditions.
I do hope that you continue to do well with your diet and supplement regime.
Wishing you continued good health - M
Hi Pat
You have Bell's Palsy as well as MD?
When you were researching did you find any connection between those conditions and MD?
I have read that some doctors / researchers think that a small number of people with MD might have an eruption of an old herpes virus infection in their inner ear, similar to people who have had chicken px in the past getting shingles when the virus reactivates.
I hope you find a way to manage your health problems. All the best - M
Hi Phil
Do you think you could find a way to point us to what you found without posting a link?
I hope you are getting some help with your health problems.
Best wishes - M
Hi Tanney
I will try to post a link but usually they just send it to forum jail!
This is the link to the Exeter Medical School research:
[link removed by forum moderator]
I am hoping the moderators will allow it as it's not selling any product, it's genuine medical research
Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.
http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
Tanney
Well, that didn't work! They might let it out of the pokey later but if you try googling
Research provides new insights into Ménière’s Disease
it should take you to the article in hearing review. It's not a long article but interesting I think.
I have also read elsewhere that there are possible links between MD and obesity, circulatory disease and diabetes.
Researchers seem to be thinking more and more that MD is multi factorial in origin and stems from different problems in different people. But hopefully every new piece of information will eventually lead to a real solution to this horrible condition.
Hope you are doing well. Best wishes M
Thanks Misti. I sent a private message to you so maybe you can send the link back to me via private message....since moderator prefers that. Just click on the envelope sign under my name on left side of message
Hi Misti,
Was on that site all last night and have emailed them for help. They say they reply within 24hours, so we will see but I can see many things I am doing that might be making things worse. Just need a bit a guidence. Hmmm not sure how I can do this without a link, don't want to upset the moderator or anyone else. Maybe this is ok? Do a google search for 'Meniere's Help Thyroid' that was the page I landed on, their article about thyroid. It is on their blog. have spent most of my time on their main site since. Would love to know what you think and discuss what you find.
Hi again Phil
I found the site thanks. I'll have a good look later and get back to you but I have to go out now.
One thing I did notice though is that the guy running the site is selling two books. Meniere's completely turns people's lives upside down and is so unpredictable that everyone searches for "the answer" - I spend too much time consulting Dr Google myself!
I would not want to tell you what to do , but I think it might be wise to be very careful of anyone who is selling a product.
Misti
Thank you, Misti. I appreciate it. You know, I'm very lucky to have been a reader, and thus realized fairly early on that things weren't right, and that there was help available. Granted, when I began therapy, it was not "fashionable" or acceptable, as it is today. But still, it was a tremendous help.
I've done lots of research on the effects of amphetamines in utero and have consulted with a number of physicians on the subject, as well. It's pretty much a unanimous conclusion that the drugs had a significant effect on my neurological development, and were likely responsible for the bone and GU congenital deformities. Insofar as the GU problems, I would not have lived had certain technologies (like the IVP) not been developed when I was just a few years old. That resulted in my being able to have the corrective surgeries I needed in order to survive. As you probably know, we're still quite far behind in understanding the brain, and neurological problems in general...So, I'm still dogged with those issues. And trauma....well....thankfully, there are some new modalities that can be embraced, that are very effective in helping with everyday life. I've been working on it.
I've never discussed the pre-natal amphetamine connection with my otolaryngologist. I'm fairly sure that's not a common theme among MD patients. But I do know that my neurological wiring is screwed up, and I wouldn't be surprised if made me more vulnerable in some way, to MD.
In thinking back about unusual things that might have stressed my system, that might possibly have played a role in my getting MD, I thought of another thing: I had to work at my father's automotive garage from the time I was 9 until I was 21. I worked there 6 days a week, pumping (leaded!) gas and fixing cars. I inhaled a LOT of exhaust fumes in my day. Additionally, we wore no ear protection back then, and it was very loud in the bays. Who knows if that was a contributor.
Later on, during my 20's, when I began my own career, I was inadvertantently exposed to quite a few toxic chemicals, as well as radiation. I switched to an office envioronment in my 30's which was probably a lot safer!
So, for me....I feel as though there are simply too many variables to consider. I could spend the rest of my life trying to zero in on the causes. I'm willing to go with the immune theory, since it seems to underly so many diseases, and it makes so much sense. But with our polluted environment/food/water, I'm not so optimistic about our ability to really get a handle on it.
Well...I've rambled on for much too long!
I think this is great thread!
Take good care,
J-
HI Misti,
I sounds like you are at the same site. The guy's name is Mike. He answered last night with a very long and I have to say helpful email. I asked him about the thyroid possibility and he then sent me links to two of his articles about endocrine disorders and metabolism because they are connected. I asked him about his books and honestly? He said you can find most of what you need on the site and blog, didn't try to sell me anything. He also said he is happy to talk with me for as long as it takes. He even gave me his skype address, but I don't fancy that because of my hearing. He seems a really genuine guy though and you can tell he knows his stuff and has experience.
In the end I did buy one of his books and downloaded it. Read the first few chapters and truthfully I am glad I did. I am finding answers there that I cannot anywhere else. He has really done his research, that is easy to see and has a great way of communicating everything in easy to understand language. I am just about to email him again with a few questions I have. I trust my gut and my gut tells me Mike is a good guy. Will let you know how it goes.