General Category > AN Issues

Questions from a Lupie w/poss AN

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lupie1:
Hi everyone. To make a looooong story short. I am 40 DXd w/Lupus(SLE), Fibro, OA, APS(blood clotting disorder), Sjogrens, Corneal Erosion Syndrome-thanks to Sjogrens- and Raynauds, and Meralgia Paresthecia-severe nerve damage in r leg, etc...etc...
I take 9 diff meds a day-14-16 pills a day. I'm a wlaking pharmacy.

Currently, i am undergoing yet more testing with Rheumy, ENT, Neuro. Since mid to late Feb. I have been having issues of balance probs, ringing and noises in my right ear-24/7, worsening cognitive/neuro problems. I was in the hosp for 3 days in mid April because of it all. I have had a CT scan, bloodwork, xrays, carotid doppler, EKG, an MRI(but not of the IAC area w/GAD-thats coming up next week at Rheumy's request...no, insistance) I aslo had and ENG, ABR, basic Hearing test all at ENT-all NEG. No hearing loss, no meineres or vertigo-which I could have told them.lol My dizziness I have is a side-effect of Lupus,have had it for years, and my balance issues are more of a 'feel like the floor is dropping out from under me' thing. lol
My memory is shot-mostly short-term, I am forgetful, say words wrong, can't think of words I wnat to say, write and type all mixed up. I do the most stupid things-like trying to take my sneakers off...when they aren't even on my feet! Or putting the empty can of corn...INTO the bowl w/the corn in it and going to put it in the micro!...just to name a couple. My legs give out from under me too and I am even more exhausted lately than the norm LUPUS/FIBRO EXHAUSTION! Can't concentrate well, noises bug me(ear wise) which makes talking to people an effort. The ringing in my head is maddening!! It goes from a high-pitched ringing to a buzzing and humming. and NOW, when i scratch or rub my head/face on either side, or chew or bite my teeth together on the right side...it actually CAUSES my right ear to HUMMMMMMMMMMM!! Its nuts!!
I also get sudden sharp stabbing pains in the area of my right ear-like behind it in my skull.
Haven't been back to work since early March-can't function enough to do so. Its a very busy auto repair shop and between the machinery noise, not being able to hear things right or talk on the phone with ease, I just can't do it anymore. Luckily my boss is a long-time family friend, who BTW, has MS, so he totally understands my health issues-just told him today that it loos like I won't be able to return. I can't chance messing up his biz...ya know? I was the office manager, handling aco****s, money, etc. I can't remember to turn the oven off anymore-how can I run his office naymore??? :(

On a side-note: my left ear has had some as-of-yet un-DXd disorder-seen many ENTS-all are baffled. Its hard to explain, but for about 7-8 years now, I get a beating echo in my left ear when I talk!! Its an actual 'beating sound' which happens with EVERY SYLLABLE I speak! Like if I say, "Hello, how are you?" My left ear goes.... "Bum,bum...bum bum bum" on a slight delay. I have found a way to make others understand what it sound slike-put your palm over an ear and with a finger from your other hand-tap on the back of the hand over your ear. THAT'S what it sound slike!!! lol That ear had bene tested to the hilt too with no results. lol

Anyways, my old neuro, about 3-4 years back, tested me for AN in the LEFT ear because of that problem and some facial/temporal numbness I had then too-came out NEG.

Last week at my Rhemy's for my Lupus checkup, she about lost it when i told her I was in the hospital. My neuro never even called her (she's w/a diff hospital) nor did they call in an ENT(my own is on staff there!!) or call in a rheumy at all to see me during my 3 days there-neuro wound up blowing it all off as being 'Fibro-related' to which my Rheumy(God how I love her-she's my God-send! lol) lost it when I told her that too! She actually went and called both my neuro and my ENT, then and there!!! She asked my neuro 'how do you admit a patient with Lupus as the primary DX and NOT call in a rheumatologist when she is presenting with such symptoms!!?' lmao (needless to say, i am going to a NEW neuro now! lol)
Anyways, she told me she thinks I could have an Acoustic Neuroma-apparantly, it IS seen in us Lupies and there IS some connection via Autoimmune Inner Ear Disease-I was reading an older post her and Lupus was brought up) She is also ocncerned that this could be Lupus Cerebritis-which well, would be VERY bad news. So she told me she wnated me to go for an MRI-I told her I had one in the hospital-she said it doens't matter because if they weren't looking in the IAC FOR AN, they wouldn't find one on a basic MRI scan.

I'm just going crazy with all these worsening health problems...like they weren;t bad enough...and I'm trying to find out about certain things in particular associated with AN-like balance, cognitive issues, the ringing in the ears/Tinnitus, i know tinnitus is very common w/AN but I am wondering if any of you have also had that HUMMING I mentioned when I chew, scratch, etc...

I know my symptoms could be from the Lupus and/or overlapping with symptoms of other things-thta's the problem with having all the autoimmune disease-you never know what is causing what! Though...my most recent Lupus bloodwork shows no sign of activity right now-so that may rule that out-though not the brain area if it IS being now attacked by Lupus. I need yet another MRI for THAT!
I'm just so sick and tired of being sick and tired! Tested, re-tested, poked and prodded over and over. i long ago got use to needles, they don't bug me at all...its just the inconvienance and annoyance of so many appointments and tests!! lol Rheumy also thinks I have Libman-Sacs Endocarditis(a type onlu Lupies get) which is vegetations in the heart valves-have to have a special ECHO done to check that and soon  too! My heart has already been in trouble! A year ago I had a Cardiac Ablation to correct severe SVT(supraventricular tachycardia) and then last Sept. a cardiac cath to rule out an artery blockage due a suspicious shadow on my chemical stress tests results!! Thank God, it was just a shadow! lol ENOUGH ALREADY! lol

So much for making it short. lol But it involves so much its hard to put it in a 'little picture' lol

I'd appreciate any input here. I know quite a bit about AN from researching it years back when I was tested for it. But all the books, papers and websites cna't cover the individual experiences and symptoms you all have/deal with. I am especially interested in the autoimmune aspect and the strange new humming, as I mentioned.

Thanks for taking the time to read this.

 :)
Cathy

p.s. forgot to mention, i have taken to wearing ear plugs because frst of all, I've been wearing them when I sleep/nap due to my anxiety attacks-slightest noise wakes me quick and sets off an anxiety attack! But since all this ear stuff began in feb. I have been wearing an earplug in my right ear almost 24/7. ENT said if it helps, it can't hurt. lol I find it even helps w/the balance issues.
Oh and...see...I forget everything! lol Back in March when I first saw ENT, she found NO signs of blockage, infection or recent infection at all, to explain any of the problems. AND....lol forgot too, to mention the fullness/pressure feeling I get in the right ear as well. I THINK that's it, but probably not. lol

ppearl214:
Hi Cathy and welcome.  I'm sorry to hear you are living the trials and tribulations of health-gone-sour... like you, I can relate to much you note as I also have FMS, curable pancreatic cancer, AN, spinal fusion, sister with Lupus, oy.... and all at the age of *coff* 46.

the only true way to confirm IF you have an AN is by an MRI WITH contrast.  The MRI is the only way to truly give you a diagnosis (or not) of an AN.  Hoping your dr's will order one to help end the suspense.

Hang in there.. and as one sista-in-health-blahs to another..... I commend your strength and hope you gain answers soon.... you've earned that!

Again, welcome.
Phyl

lupie1:
Hi Phyl and thank you for the welcome and comments.
So, you have Fibro too, huh? Sux doens't it? lol
You've been through a lot yourself and must be a strong person as well.
 :)
Like I said, its just that it never seems to end. MS has even been suggested, but did my other neuro do a spinal MRI or a spinal tap? Nope, just the MRI of the brain, when even I know that MS lesions show up in either the brain or the spine. lol Unfortunatly, MS is not unheard of in Lupies either-matter of fact, i know several that have it w/Lupus/Fibro/etc. Lupus NEVER travels alone! lol

Thanks again and I hope all is going/goes well for you, hun.

:)
Cathy

Yvette:
Hi Cathy and welcome. My heart aches for you. You must be one strong lady to be so upbeat in spite of what you're enduring. I hope you get your MRI with contrast to verify an AN or not. Let us know! Blessings, Yvette

kippy6:
"I get a beating echo in my left ear when I talk!! Its an actual 'beating sound' which happens with EVERY SYLLABLE I speak! Like if I say, "Hello, how are you?" My left ear goes.... "Bum,bum...bum bum bum" on a slight delay."

Hi there Lupie,

Before being diagnosed with AN, I would get the same sound you are talking about (mentioned above in the quote). Also, sometimes instead of the 'beating sound' there would be clicking sounds after every syllable. And sometimes the clicking would just click on it's own during complete silence. That was really weird. Thankfully that didn't happen very often.

Interestingly enough, I had some blood work done at the doctor's office this past February. My ANA screening (tests for Lupus and/or rheumatoid arthritis among many other immunity-related diseases) was positive, along with some other minor things. Because of the positive ANA, my doc sent me to a Rheumatologist. He wants me to come back as there are some indicators in my new bloodwork that I still need to be seen. I'd be interested in knowing how many people who have had an AN have had a positive result on their ANA blood test.

Please let us know how this progresses. Best wishes. We are all here to support you along the way.

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