AIED..Auitoimmune inner ear disease

[RSD_Angel]

Hello all..

I was wondering if any one on here has AIED? I was diagnosed 2 years ago with this and was supposed to take methotrexate for it but i never did bc the doctor was a jerk and dindt answer my questions... but I am now loooking into getting treated for it bc my symptoms have gotten steadily worse.

I was first diagnosed with menieres dz and then sent to a specialist that did bld work and said it was AIED and only suspected this because i have RSD and hypothyroidism.. both autoimmune.

So my questions are , what are you taking for treatment and has it helped with the ringing and vertigo spells that hit. and do hearing aids help with the hearing loss?

Thanks for the help!!

~Amber

[jccgf]

Hi Amber,

I had similar symptoms associated with a B12 deficiency. The ENT originally suspected Meniere's or BPPV. I also have autoimmune thyroid disease. Pernicious anemia is yet another autoimmune disease where one lacks the intrinsic factor to process B12, leading to B12 deficiency. Other things can cause B12 deficiency, too, like continued use of antacids, gluten sensitivity/celiac disease, or other malabsorptive disease.

I had crackling, buzzing, ringing, and painful pressure in my ears, muffled hearing, and vertigo attacks. For me, the symptoms all resolved when I corrected the B12 deficiency.

So...given you have thyroid disease which puts you more at risk for both pernicious anemia and celiac disease... you might want to ask to be tested for these conditions if you haven't already been. Especially check your B12 level if you haven't ... it is such a simple thing to correct, and the symptoms are usually reversible. Lab lows are set around 100-150, but you want a B12 level in the upper range. People with levels as high as 350-400 commonly have neurological problems. You can check out the B12 deficiency page in The Gluten File, just scan the right bar until the very bottom. Gluten sensitivity itself can also cause neurological problems, but the specific antibodies associated with neurological disease are just beginning to be researched.

Cara

[RSD_Angel]

OK I had bld work done this morning, i had them draw a full thyroid panal.. bc they only usually test the TSH to monitor my levels and also had them draw a B12 level.. soo hopefully this will shed some light on to alot of my prob's.. i will let you all know what comes outof it.. they said i should have them by thurs at the latest..

Thanks
Amber

[fanfaire]

I have ear problems that my ENT said were likely autoimmune related, but I didn't know there was actually a condition called autoimmune inner ear disease. My B12 levels are fine despite having celiac disease (I did supplementation for awhile though). But I have other autoimmune ailments that could be contributing.

I have not done hearing aids as they are quite expensive and my insurance won't cover them. I have not found anything that will help with the tinnitus, but I have grown accustomed to it despite it being quite loud. I tried a few medications (Valium and Meclazine, I think?) for the vertigo, and they helped some, but I didn't want to stay on them long term, so I tried something else.

What worked much better for my vertigo was vestibular rehabilitation. It's basically physical therapy to retrain your brain and body to work together when you're dizzy. I went from nearly falling down everytime I stood up to being able to stand on an uneven surface on one foot with my eyes closed.

I still get vertigo episodes, but I am able to cope with them. I've learned where to focus my attention to keep its effects to a minimum. I bump into things once in awhile, especially in the dark, but I no longer get the nausea and swimming head sensations.

Looking forward to finding out the results of your tests. Would also like to know if anyone else AIED.

fanfaire:cool:

[RSD_Angel]

Hi Fanfaire,

I never heard of it before and i worked in the medical field for 10 years.. here is a link to a site thats informative... I think if people read the article and took it to there docs i think there would be alot more aied patients then prob menieres bc its soo rare, but not much known aobut aied.

http://www.american-hearing.org/disorders/autoimmune/autoimmune.html

I am on prednisone for mine and still have break through vertigo spells and i have learned to cope with them to a point.. i can notice when i get them and focus on something and press on my temples to get them to go away.. My doc has suggested a hearing aid for my bad ear, but my insurance only covers 300.00 of it and the one i need is like 1200.. ahha.. im on SSD.. and cant afford rent.. sooo.. i deal with the hearing loss ...lol

I am only 29 and have too much on my plate and stuff just keeps on piling up.,. just wish i could scrape some off soon!! lol

Talk to u soon!

Amber

[fanfaire]

Wow! Excellent link! My ENT suspected my ear problems were likely caused by my Sjogren's syndrome.

However, the paragraph on "Intolerance" was really interesting. I have been 100 percent deaf in my right ear since I had spinal meningitis when I was seven years old. I wonder if this predisposed me to future problems with the left ear?

Yeah, I understand about being on SSDI and not being able to afford "extras" that should really be essentials. I hope your plate stops piling up too. It already sounds full enough. :eek:

fanfaire
:cool:

[RSD_Angel]

My docs here locally thought it was all menieres dz and said there is nothing to help the hearing once its gone.. but then went to a university aobut an hour and 1/2 away from me and got the AIED diagnosis and that if i do become 100% (im not 80%) or if sooner if i want to , that i can go in and have a cochlear implant done and i will be able to hear out of that ear. Have you been given that option??

:winky:
Amber

[Jocelyn]

I also have a inner ear problem and I have had several autoimmune problems. mine are Graves Disease, RSD, Asthma, Celiac Disease?, Osteoporosis and low iron levels. i had not thought about either AIED or low B12 symptoms. My B12 ws ok last time I checked.
But this is food for thought and considering the other problems with inflammatory problems, it might be the cause. One other cause of lack of balance is dehydration. Now that is something I can relate to as I often forget to drink water.

[RSD_Angel]

Jocelyn,

Have you been diagnosed with AIED?? and are you taking meds for it??

Amber

[Vowel Lady]

Following this link...I saw a possible issues with low magnesium and low B12 for these types of problems. ???
http://www.ctds.info/5_13_magnesium.html

[crytears]

I suffered long time with balance loss, ringing ears and "stuff" like that.
At the time I was on a merry-go-round of seeing Neuro's, Rhuemy, Gastro and Endo docs...non of them had the same conclusions...who the heck to beleive?
I had muscle weakness, muscle twitching, Peripheral Neuropathy, Hypo-thyroid=Hashi Moto's,(I had a very raspy horse voice and still continue having this because they can't get a handle on my thryroid levels.
I also had Crohns (had a double resection small bowel 3 ft in all)
2+ years of severe anemia w' lowest 5.1 hgb was from intestinal AVM (anuerism), I had so many blood transfusions I lost count after 25.
And last but not least...Firbromyalgia (who DOESN"T have this?).

I asked each doctor if I had some sort of vit or min deficiency because of my having 25+ years of diarreah first dx as IBS because of FM...
but later dx as Crohns disease BUT..
Since discovering these forums, I learned about B12 defeincy and began taking JUST the Methly B12 sublingual tabs...
within weeks I began to heal....
my loss of balance, dizzyness began to get much better no longer needing the rolla walker or hang onto walls or things just to walk without falling....
AND...I took the advice, given here and BT, to just try a gluten free diet to see if that helped my diarreah and gut pain issues.

But doctors kept telling me I did NOT have C-sprue and didn't need a wheat or gluten free diet.
They told me my B12 level was normal...didn't need supplimenting!:eek: as my B12 lvl was 232!:eek:yes within guidlines, but is horribly wrong!
Thank God for the great advice about Methyl B12!:o...I shout THANK GOD!

I've been tested for this thru biopsys and blood, stool test...all negative.
I did have positive serum for Crohns disease...something about being within certain percentile by Permethius Labs in Calif....so my gastro issues WERE auto Immune bowel disease!...thats what they told me all these years.

How could all those gastro's I'd seen be wrong...even the head of Gastro up at the med school of Oregon told me my symptoms were "just" Crohns disease and not because of gluten. Oh how wrong they all were!

I was being urged by many here on these forums to just try a GF diet, I'm stubborn...and what do THEY know anyways!...how foolish this sort of thinking is...wont hurt you to try it!
Finally, last April I began my journey with a gluten free diet...within a few days my diarreah began to disappear....I've enjoyed near normal BM's now ever since...and my gut pain...all gone!...as long as I stick to this GF diet.
I've weaned myself off all Crohns meds such as Immuran, Asocol, Pentasa, Steroids, and I no longer have gut pain!:p
And my balance issues wax and wayne but never as bad when wasn't taking the Methyl B12.
My Neuropathy is almost gone...I do have slight burning on bottoms of my feet and fingertips....and sometimes I have body wide skin sensitivity (I've been told is a FM issue)
If I fail to take enough B12, my first sign is loss of my balance.
I'd urge anyone with such ear problems, balance or dizzyness issues to at least try a few months of Methyl B12...
it can't hurt you, but must include other supps in order for this to work properly.
Rose has been a God-send for many....I hope you've been in touch with her.
All the doctors who'd seen me failed me miserably...is standard protocol to give Crohns patients B12 shots....especially when have any bowel surgerys such as I had.
I'll never forget my last "visit" with a woman Neuro...her Roll-eyes, huffing, dismissive and very sarcastic. 3 times was 3 too many with her.
I left her office in tears...she made me feel crazy and didn't beleive I was suffering as I'd told her. She told me the muscle twitching was nothing to worry over...was "JUST" BFS (benign muscle fistulations)...idio-pathic!
I was so fatigued and weak my husband had to help dress me and poured me into our car and wheeled me into my appts.
I'd only have my hair combed, teeth brushed when others helped me, i was THAT fatigued...no one could ever beleive this unless they'd experienced this themselves. My husband paid for inhome care givers when he got too busy or needed to focus on his work...he works here in our home and travels from time to time...his home office is right across our bedroom..I slept about 24/7 then and rarely got out of bed...a lot suggested was depression, perhaps if I'd ONLY put on some lipstick and smile I'd feel much better...
I was also seen by a well known Rheumy up at Med School...
she told me all symptoms were "just" Fibromyalgia...God...do they ever think outside the box???...NO!..she was the one who suggested I use lipstick!
Yes...I was very depressed....who wouldn't?...I struggle with crohnic pain on top of all these other issues.
I think because the first Neuro I'd seen, caused the rest of the doctors to disbeleive me...and is reason they refused to order or perform the testings my Rhuemy had asked for...he'd ordered EMG & NC test and a muscle biopsy. He'd diagnosed me with Polymyositis...but the neuros refused to perform any of these thinking I was just malingering.
Finally got the EMG and NC which proved I had moderate sock glove pattern of Perihperal Neuropathy...you cannot fake these test!
Finally they began beleiving something was seriously wrong with me, but still just ordered medications just to mask symptoms...how could they all be so stupid? They were!
Last weeks program on Disc Health Chn...Mystery Diagnosis segment called "Bizzarre Visions"...story of one womans 10 year battle, finally diagnosed as B12 deficiency!...her story nearly exactly mimics mine.
I have this onto DVD disk...if anyone interested I can mail them a copy.
Anyway...I hope this helps a bit....taking B12 certainly won't hurt you!:D
Blessings, cheryl