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Never a dull moment with MS

For the past week, hearing loss combined with tinnitus (sounds like a wind tunnel) and hyperacusis (sounds amplified to the point of ? Pain) intermittently in my right ear. I've had this before but usually only lasts a few days. Not sure how all of these things can occur at once but they do?

But a new one for me is my body quivering (fasciculations). It's just a brief mild sensation that I wasn't sure if I was imagining. So I had my husband touch my legs and he could feel it. Anyone else get this? It's different than the "vibrating" body parts associated with neuropathy.

Some times I think about where the lesion is in my brain that's causing a specific symptom ~medicalizing it in this way likely distances me from the emotional connection. 😜

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Awwww ~hugs~ erash ☺ I'm not sure if anyone can feel what l feel or not. They don't say anything if they do.?. I used to look all the time for what was against the couch. I jus got used to it.

I haven't heard about an appointment for my tinnitus, or my MRI. The white noise really helps though. Hey did you ever say why it would throw me off balance like it does? Lol l lost that thread! 😞😅😅

J 🌠

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Thanks! For the hugs Jesmcd2 and back at you 😊

I haven't heard about my MRI either. No news is good news?

The 8th cranial nerve affects hearing and balance and nystagmus/vertigo. I would guess that's being affected. Though we know location of lesions don't always correlate with MS symptoms this could be seen as lesions in the pons, medulla, or cerebellum (I know...TMI)

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As l pull out my medical book!😁😅😅 🌠

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Found it! I don't think l have lesions there😕 but like you said Never a full moment! Thank you for teaching me something new today!

erash 💕

J 🌠

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erash I am not totally sure I have the quivering but when you said you look for something vibrating in the couch (or was that Jes), I have done that. I have lesions in my pons. Can you explain what you meant? I'm a bit slow today....☺

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Hi Karen-x

That was Jesmcd2 who looked in the couch 😂😂😂

To me the vibrations are a stronger sensation, like a buzzing, often associated with numbness--usually in my feet or lower legs. The quiver is more of a very fine and rapid muscle twitching --usually of larger areas of my body.

Kind of like asking someone what their pain or dizziness feels like. We each likely have different descriptions and experiences?

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I know that you like to be a busy bee, but do you think if you just take time out and rest, give your ms body a breather, the symptoms may disapate. You are always doing something which I know is good for the soul, but maybe little and often might have to be the new you. Sincere hugs and blessings Jimeka 🦋 🌈

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I'm working on it jimeka 😉

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Lol, I am having real cog issues today! I was wondering what you meant by this: "Though we know location of lesions don't always correlate with MS symptoms this could be seen as lesions in the pons, medulla, or cerebellum (I know...TMI)"

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Karen-x

Mostly what is reported is that the number of lesions doesn't necessarily determine amount of disability.

But also...

If you have vertigo and nystagmus you would assume there's a lesion affecting the ocular and/or vestibular regions of the brain. But sometimes there may not be lesions in these areas seen on MRI.

By the way, my cog fog has been worse the last few days too. So take everything I write with due caution.

Walking into rooms today without a clue why I'm there and almost left the house w/o my keys. jimeka is right...I need to slow down a bit.

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erash I think that 'Caution, all things written in this post should be taken lightly or with a grain of salt" Should just be assumed and under all and every post! LMAO!

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I just want to say I am glad I came onto this site I have for a time i hear like adull buzzing in my ears more the rights than the left and sometimes my right ear lobe hurts really bad. So I take it this is my MS. and it does happen. Because when I go to my PCP she doesn't find anything wrong. It's good to know it's real, I mean I know it's real pain but know one else knows what is going on.

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Erash, it's Fancy1959. Keep chin up and try not to let this snowballing effect of your symptoms weigh you down too much. I wish I were closer as Jes said to give you a big bear hug! It's hard to do through this Electronic Connection we are sharing but know that I am hugging you in lifting some of that load off your shoulders. I had early in my diagnosis the vibration effect. I was laying in our bed one night and I asked my husband when he turned on the bed vibration mode. My legs were literally vibrating and I was completely blown away by the comment my husband made that he did not turn on the vibration on the bed! The first time it happened it was beyond scary! I don't get that very much anymore thank goodness. And my hearing is hanging in there along with my eyesight so I can't my blessings every day. Remember oftentimes the affects we feel throughout our body come from the lesions we have all our spinal cord, not just our brain lesions. 💕☺😘

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Fancy1959

I feel your hug! Thanks! 😊

thats true. Demyelination means messages are not getting through as well. So perhaps more distal lesions in the spine slow the messages and have odd effects.

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Oh, Erash! So sorry you are having a hard time! You are always so strong and supportive for us. Take it easy and give yourself time to bounce back!

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SueAB Fancy1959 jimeka Jesmcd2 and anyone else I missed...

Thank you all for your hugs and support but I wasn't complaining...I truly was just saying, "MS is always full of surprises"

And maybe there's something therapeutic in "just saying" or definitely in everyone's well wishes, because my hearing stuff is nearly resolved today 😊😊😊

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Sounds horrible and I wasn't trying to be funny by saying Sounds, Hope it goes away quickly.

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@erash, this certainly is quite the adventure. I'm sorry you've been dealing with things that are so uncomfortable.

I've noticed in the evenings many times that I feel a sort of buzzing in my arms and hands, but I've never thought to ask my husband if he could feel it by touching my arms. I thought it might be related to fatigue since I notice it in the late evenings, but who knows? I never guessed we'd experience such bizarre symptoms!

I hope these painful/irritating symptoms subside quickly for you.

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Erash, I often have the vibrations you described and yes my hubby can feel them. They kind of weird him out. He wonders how we all manage with all the bizarre symptoms our bodies throw at us. For instance, I always feel like something wet is running down my leg, but there is nothing there. That happens many,many times a day. And now my hearing is shot. Oh well. I am grateful for the good things. I'm so sorry you are having a rough patch and will send up some prayers for you. You are a great person, Liz. 😇 Love, Kelly

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Thank you Amore55

I feel bad that I even mentioned these things now because I'm not Complaining or upset about them. They are just weird things that I am watching happen to my body.

I'm a bit of a control freak and MS reminds me that despite my best efforts, I'm not always in control.

So much kindness here it's overwhelming 😍

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That's cause we love you! erash 💕

J 🌠

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Erash, I am a control freak also, but have learned to let go of a lot of stuff. I don't think for a second you were complaining, just venting and asking questions, both very good things. Thank you for all you give to the forum! ☺️ Love, Kelly

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Amore55, I had the vibrating in 2006/7 haven't had it since then. The wet feeling/ feeling like my legs are wrapped in latex was very annoying. Had the wet sensation last a year ago. The worst is depression, fatigue, anxiety, and restless legs at night keeping me awake. Last night I didn't sleep, was up until 7am then I took a nap. For meds i use beta interferon, take provigil for fatigue. Multi vitamins, zinc, and vitamin D.

In the past I had spots in my vision, loss of sensations waist down, tinnitus, needle sensatii....

I applied for retirement a few weeks ago because I couldn't go to work any more.

Mike

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Gman25n

Sorry to hear of all of your symptoms. Early retirement really reduced my stress and overall made me feel better. I hope it does the same for you!

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Hi Gman25n Welcome to our wonderful MSAA Community ☺. So sorry to hear that you had to put in for retirement. That can be a stresser in it's self, let alone what your already going through.

Are you taking anything for your depression? As there is more and more research on MS and depression combined. It does worry me. My neuro put me on baclafin for RLS. Turns out lm allergic, but it might help you.☺

How long have you had MS? Where are you from? Tell us about you! I'm nosey.😊

Jes 🌠

~Helpful Hint~ If you put an @ in front of person of who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

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Hi jes,

I'll see what happens with the retirement... Since I put in for government disability and social security disability. When applying for government disability I had to apply for the social security disability....

I was born in Germany, went to American schools. Joined the Army at 17, worked for the government in one way or another most my life.

The Army moved me to California in 2012 from Italy. Been living in the high desert of southern California since. I was diagnosed in 2006 with relapsing remitting multiple sclerosis.

🙂

Mike

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Hi Gman25n

Just curious where in Germany and desert in California?

I was stationed in Germany and N. Calif. and did desert training in Camp Irwin, Mohave.

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Hi, I was born and raised in Grafenwoehr Germany(grafenwoehr Vilseck Hohenfels) which is large training area for the Army.

In the desert I was working at AFRL Edwards (Air Force Rocket research laboratory) live at North Edwards to be close to the base and work.

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Gman25n I've Camped in Graf 😅

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LOL, camping in Graf... sounds more like a training exercise. I was K thru 6 in Grafenwoehr followed by high school in Nuremberg then Vilseck.

It's another beautiful sunny day here in the high desert...

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Gman25n

Loved Germany. Especially a short stint working in the Army Ski clinic in Garmisch.

"Camping" Army style in Graf, Fulda, or Baumholder was interesting....😬

And really! loved the high desert --Both the Mohave (Camp Irwin) and Ft. Huachuca Arizona.

Enjoy the beautiful day 😊

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Hi Gman25n Good Luck with your disability! That's cool you were born in Germany. Were your parents German or military? Told ya lm nosey😅 lm half German with the German temper😞 I scare myself 😅😅

I have lived up and down the state of Cali I miss it! But lm sure it's changed alot since l have lived there. Every once in awhile l will check out the San Diego Zoo Animal Web Cam's 😊

Sorry about your DX. Been 2yrs 1mos for me.😑 It's a work in progress.☺

How are you handling the heat out there? I think it would kill me😅

J 🌠

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My father was army for 27 years, he met my mother in Germany. He went to Vietnam and Korea for war and returned to my mother. My mother had a son when she met my father. My dad adopted him.. he is very different from me and lives in Germany. He never wanted anything to do with America or American ways. Guess you can't change DNA.

Heat...hmmm, there is AC, I actually feel better in the heat. Cold weather just makes my hands and feet feel even more numb. I dont go laying out in the sun, or spend hours in it. I prefer the mountains here and walking in the woods.

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Hi Gman25n nope you can't change dna l guess. I have a half brother and sister like that. All you can do is shrug your shoulders.☺ And say see ya.😅

MS has decided to take way my love of the sun ⛅ 😧😧😢 I used to be outside all summer long! Now it makes my physically​ ill. 😞 This yr I'm going to have to adjust my outside time.

I hear you about your hands hurting in the cold. I wear my tipless-gloves in the house!😅😅 I love them!

Where did you work? If you have any questions about all the paperwork for your disability, we have resources available.☺

J 🌠

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Thanks,

I worked for the Air Force Rocket research laboratory here at Edwards California. That would be great if you have resources that could help with my paperwork. I called a couple attorney and they said call after in disapproved. Couldn't believe what I heard, but guess they can probably charge more that way.

Thanks again,

Mike

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Hi erash, sorry you have embarked into this new area of MS strangeness, but I think we all can relate. It seems, as you say that demyelination can cause such a variety of symptoms that it becomes very subjective and we all have our own story. I get a vibrating or quivering in my left hand that feels like an electric shock and sometimes is associated with extreme pain in the arm and sometimes happens by itself.

Speaking of pain, my own episodes of pain, which were increasing in intensity, seems to have eased somewhat in the last few weeks. I don't know if this has anything to do with the Alpha Lipoic acid I am taking but I will keep you posted.

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BillD999 sorry to hear @ the increased pain 🙁 But glad the ALA seems to help!

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I have the ear tinnitus also. It is more constant then ever. I already have hearing aids, and the constant noise in my head is making my hearing problems way worse. I'm wondering if it's a side affect to meds. I'm going to wean off Baclofen muscle relaxer and see if I can get the ear noise to go on a cruise. It'll take a couple of weeks, but if it works, I'll let you know.

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Good_enough

Interesting...i'm reading that baclofen can either worsen or improve tinnitus depending on the L or R isomer used in research studies.

Hope weaning helps you though 👍

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I'm sorry to hear that you're going through these things erash , I will keep you in my prayers!!!

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Old post, with a fresh update.

In case this helps anyone, I've found out that I have Otosclerosis, which is a calcification on some tiny bones in the ear. Conduction of noise won't vibrate correctly. I'm thinking maybe that tinnitus is related to this disease as well. Worth a check out. The disease is actually genetically passed. I don't believe that Otosclerosis has anything to do with Multiple sclerosis.

But surgery has an 80% success rate. Hope it works for me in February.

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Good_enough

They tell me (3 ENTs) it's the MS

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So maybe the hearing tests alert the ear doctors to this without them thinking of the MS.?

I'll bring it up to my Nuero first.

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Still worth an audiologist hearing test. Have you had that done erash

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Good_enough

Several

All normal

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erash HI! I have been gone. I decided to come back and this is the first post I saw. Are we twinning? I am having the exact issues especially my ear. My left ear. Starts with a pulsating ringing moving to excruciating pain that knocks my balance way off. When that finally subsides my legs start to ache and shake. Very so very mildly i can barely feel it. My wife says she can see it. I just had my yearly MRI's. Head, neck and thoracic. No new lesions. Just old ones not healing and some signal abnormalities in t-1 and t-2 Also C something. I can't keep track of all the numbers and where they are. So, my point is this. I do not know if you get thoracic MRI's with and without contrast. If not maybe request it. Possible lesions or signal loss there. That is how MS was found in me was a Thoracic spine.

Praying you had a wonderful Christmas and have an amazing New Year!!!!

As usual, love all you guys. Hope to talk to you all soon!

Rob

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rlh1974

My symptoms are abated at the moment. Can't recall if t-spine ever done...unsure if it matters? Symptoms are what they are regardless of location. I've had unchanged MRI x 10 yrs

Happy. And healthy new year Rob🍾

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Hope u feel better soon erash I have no idea where my lesions are specifically. I just know I have brain c-spine and t-spine unfortunately 😕i think i need to know a bit more xx

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janetb1968

Nah... don't think knowin where matters 😜

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U are probably very right erash

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