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27 year old female MS or Acoustic Neuroma?

Hi Im new on here and have a very very long story that ill try cut short… Iv been abroad for the last year where i started to experiencea pulsing sound like my heartbeat that i could hear constantly in my left ear. If i hold my breath, change position on press on the neck artery it stopd. Iv seen the ear doctor who said my ears were perfectly normal although i must say he performed a very basic test. Iv had an ultrasound of my neck arteries which was normal. Next i had an MRI which was repeatedtwuce on thr same day andthen again with contrast. I was then told there was something found or wrong with thr acoustic nerve in my brain on the left side. Bearing in mind no one in the hospital speaks english and im going only on what u can understand,i do speak the language but when medical terms are usued its impossible andtoo be gonest i dont think they were very sure how to explain the situstion. Anyway i had another neurological test do which releaved nerve firing impairment in my left ear. MS was mentioned as being suspected but has anyoneelse experienced a similar situation? I have no other symptoms. My gp mentioned back here in the uk the possibility of an acoustic neuroma but this was without seeing the scan itself. Advice needed please :frowning: thanks

Hi Amanda,

I apologise in advance if this reply doesn’t seem particularly helpful, but I’ve been diagnosed 4.5 years, and both I and my neurologist suspect I’ve had MS much longer (20 yrs???), but I’ve never had the symptom you describe.

You need to be aware that MS is very personal to each individual - almost to the point of seeming like a different illness - because symptoms all depend on where the lesions form, which is unique to each individual.

So me saying: “I’ve never had that”, or even that I’ve never heard most people on these forums complain of anything similar cannot rule it out.

However, it is unusual for MS to present with just a single symptom.

No unusual fatigue, that you’ve noticed? (Fatigue is a very common symptom, reported by a majority of people with MS). No aches and pains, or general sense of being unwell?

Troubles with eyesight, balance, strength or stamina? Any change in toilet habits - Urgency? Frequency? Trouble going? Trouble telling if you need to go?

Any numbness or tingling…anywhere?

Unusually accident prone? Bumping into things? Stumbling? Tripping over things that weren’t there?

I’m just pointing out some of the more common experiences of people with MS. I do not mean that everybody gets all these, or necessarily any at all. However, it does seem unusual to have just this ear thing, and no other sense at all that you are ill in any way.

MS can sometimes cause tinnitus, or even deafness, although I do not think the prevalence is high, and it would be an unusual first symptom. I occasionally get a fluttering sensation in my ear, which I describe as: “Like a moth being trapped in there”. I think it highly likely that this is a spasm of the very tiny muscles in my inner ear - especially as it tends to ease off when I take Baclofen - a drug for muscle spasms.

The sensation is somewhere between a sound and a feeling, but it does NOT correspond to my breathing or pulse in any way, and is unaffected if I change position or press on anything. So I’m not convinced it has anything in common with the symptom you describe.

I really have no idea about the symptoms of an acoustic neuroma, so I’m unable to compare, but I assume your UK doctor wouldn’t have mentioned it unless the symptoms were consistent?

I don’t know, but would have thought it looks rather different on MRI from a typical MS lesion, though. Perhaps I’m being a bit over-simplistic, but I would have thought they’re not too hard to distinguish, once you’ve got the pictures.

I don’t really know what to advise, because I don’t know what country you’re in, or how the system works over there. If you were in the UK, I’d say well, the normal thing is it needs to be followed up by a neuro, but they would say themselves what the next steps are, or what further tests they want. There is no definite test for MS, but there are usually a whole load of blood tests to rule out other things (MS itself does not show in blood), you may have something called a visual evoked potential test (VEP) which is a non-invasive test (just sticky electrodes on your head), to measure if there is any delay in visual signals from your eyes reaching your brain (which could indicate optic nerve damage), and finally you could be asked to have a lumbar puncture, which is the collection of a sample of spinal fluid, which is analysed for the presence of proteins (I think it’s proteins!) associated with broken-down myelin somewhere in the central nervous system.

Most people with MS - but not 100% - show evidence of this damaged myelin in their spinal fluid.

Although most neurologists like the evidence of a lumbar puncture, it’s not absolutely essential for diagnosis - I refused and was diagnosed without one, so don’t be duped into thinking it’s compulsory. It’s your body - you can say no to anything! It can be helpful, but it’s NOT conclusive, especially if it turns out clear, as it still wouldn’t mean you can’t have MS!

I think that’s about all I can tell you, really. My gut feeling is it doesn’t really sound like MS, or if it is, it’s a rather unusual first presentation. It’s rare not to feel ill at all, or to have any unusual sensations anywhere except your ear.

Can you return to the UK to get it dealt with here? Are you in a position to go privately, to see someone more quickly?

In NHS terms, MS is not regarded as urgent, because people don’t die of not being seen quickly, but I’m just thinking of whatever commitments you may have abroad, and whether it’s worth investing in seeing someone quickly in the UK, so you can get back quickly to whatever it is you’re doing overseas.

Although the UK doesn’t top many league tables for its handling of MS, so there might be better provisions where you are, BUT it will always be a drawback if you don’t understand what’s being said to you.

Tina

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Hi Amanda

An Acoustic neuroma can cause problems with hearing (tinnitus) and balance-feelings of dizziness/spinning sensation.

It can of course be treated if this is what the problem is.

Good luck with getting a diagnosis.

X

My own experience, for what it’s worth: I have had MS for years and went deaf in one ear a few years back. I was relapsing at the time and all sorts of typical MS things were going off like a firework display. The neurologist said that hearing was rarely affected by MS, but that it wasn’t unknown, and he mentioned the need to exclude a tumour of some sort. I had an MRI and they didn’t at first notice anything odd about the auditory nerve, but they saw the lesion all right when they had a closer look at the pictures some time later. So it was MS after all. By then, a course of high dose steroids (which I needed for other relapse symptoms) had cured the deafness.

Were you able to bring digital versions of your scans to the UK with you? Do you have copies of your notes from overseas that you could have translated? I am sure that this would all be useful for your medics here as they try to get to the bottom of things for you.

Alison

Hi… my symptoms started with pulsatile tinnitus … I’ve had it 24/7 for about three years now. I had ct scan/ Mri and cerebral angiogram because they saw something on mri. Since then I’ve been told I have probable Ms . My neuro does not think my ear is related as it is constant. I have other symptoms too but pulsating ear ( and head sometimes ) with a loud heartbeat sound and extreme fatigue get me the most! There is a good support site for pulsatile tinnitus that may help called whooshers.com I have spoken to a few people now who had this type of tinnitus as their first Ms symptom. Keep us posted with how things progress, Amanda x

Thanks everyone for your speedy replies. Sorry iv not been as fast to reply iv yet to have wifi installed after moving house.

No i dont have any other symptoms at all, no tingling, pain, numbness etc. I did have dizziness and nausea when this noise in my hear first started but i dont get it any more at all. I dont feel any tiredness thats not normal for me considering i have two young sons to run around after :slight_smile: !!. Am back in the UK now for good, previously i was in Italy where they wanted to send me to a specialist 4 hours away but this would have been on a private basis which i cannot afford to do at the moment.

I do have notes in Italian and digital versions of my scans which ill take along to my appointment, whenever this appointment comes through that is!

Alison if you dont mind me asking, which were your other symptoms when you relapsed at the same time as you experienced deafness? I dont notice any hearing loss myself and my Audiology hearing test was normal, it was just the potential neurological test that detected an impairment on the left ear. Although i do experience a feeling of everything sounding too loud, unbearably loud sometimes and also when people are speaking to me sometimes i cant catch everything they have said and find myself saying, what? can you repeat that? what did you say? but its strange as i still feel as though i can hear fine…

Debbiemoth Iv had my pulsatile tinnitus for one year and its been driving me insane. Do you have any other lesions in the brain or spine apart from the acoustic nerve one? and what other MS symptoms do you have if you dont mind me asking? Does you pulsatile tinnitus stop when pressure is applying to the neck artery? or get worse when your heart beats faster eg. with excitement, nervousness or excercise or when you hold your breath? And the people you have spoken to with pulsatile tinnitus as there first symptom, did they develop other MS symptoms too quickly?

Thanks everyone for all your help. I suppose im trying to come to terms with the fact it could be MS and in some strange way i was hoping it to be the tumor as at least this was easier to treat and i know it wouldnt come back…

Amanda.x

Hi Amanda,

my pulsatile tinnitus doesn’t stop with pressure but gets much louder when I move about or exercise for example, I had numerous lesions and they thought I had a blocked carotid artery , the cerebral angiogram ruled that out so they think it’s another lesion, my symptoms have mainly been numbness and tingling, extreme itching, very stiff and sore neck ,(this feels somehow related to my ear) fatigue and stiffness and weakness, some people I’ve spoken to had tinnitus as their first symptom. There’s loads of support on whooshers website for pulsatile tinnitus but sadly I’ve been told because they cannot trace cause I will have to live with it. Hope you find a diagnosis really soon. Limbo land not a nice place to be ! Good luck! X

Other symtoms at that time: one very weak leg, numb from waist down, legs feeling like weirdly stiff, overstuffed sausages…all garden-variety MS stuff. The deafness (and that is what it was - deaf as a post in the affected ear, but no tinnitus or distortion) was the only slightly exotic symptom I had that time around!

A