Hi everybody. I'm a 20 year old male and I'm a little bit confused about what's been going on with me lately. I was hoping some of you could share your experiences from when you were first diagnosed with MS.
For me, I've had tinnitis in my right ear for about 4 years, occasional vertigo, and increasing headaches and dizziness lately. I had an MRI done about 2 years ago to check for an acoustic neuroma (a tumor on the acoustic nerve connecting the ear to the brain) and nothing was found. Later, I had another MRI done (without contrast) as part of a paid study. The researchers gave me a call and told me that they found some questionable spots and they would like to send their images to my primary care doctor. They sent them, and my doctor had me get a third MRI (this time, with contrast). He told me the results from that one were normal.
I saw an otolaryngologist who was not very good. She gave me some balance tests and always cut me off when I tried to answer her questions. However, she did mention something about my right frontal lobe when she was looking at my files, but since it didn't concern her as an ear doctor, she didn't say anything further.
Fast forward to last week. I saw a neurologist who had access to my other MRIs and she mentioned multiple lesions (she didn't specify where they were, but I assume right frontal lobe because of what the ear doctor said in passing). I am scheduled for yet another MRI this afternoon, and I am a bit worried because the neurologist mentioned MS as a possibility. When I googled "right frontal lobe lesions," one of the first search suggestions was "right frontal lobe lesions MS," which suggests that lesions in this particular area are fairly common among people with MS.
I'm interested in hearing from anybody who has had similar symptoms, or a similar course of action before getting a diagnosis. I have never really heard of tinnitis or vertigo being symptoms of MS, and those are the main reasons I even started pursuing medical help to begin with. The doctors have ruled out some explanations (like the acoustic neuroma), but there are still other possibilities on the table (Meniere's disease, or even high blood pressure for example). However, the right frontal lobe lesions have become the biggest concern to the doctors, not the tinnitis or vertigo, so that's what we're exploring for now. Anyway, please let me know if you guys have experienced these symptoms or if you have any idea from your own experience of what might be going on! Thank you so much.
Tinnitis and vertigo absolutely are symptoms of MS, and I’ve had both. The vertigo was particularly disabling on a few occasions prior to my diagnosis. I’m sorry you have to deal with those symptoms.
Many things mimic MS, so nobody here can tell you what disease you do or don’t have. But I hope the MRI today helps your doctors down the right track so you get answers soon. If it is MS, many tools are at your disposal to fight the disease, both in terms of drugs and of information at sites such as this, and you can live well!
Hearing issues are not actually a common sx of MS, rare is often stated in the research/articles across the web, that doesn't mean hearing issues never occur just that in comparison to other sx's, hearing issues are lower at around 10% but note that statistic doesn't separate tinnitus from hearing loss.
Vertigo is a less common sx at 20% than dizziness, which is suppose to be more common at 50%, they are different but often interchangeable in self reporting. Vertigo is basically when the environment feels like its moved and dizziness is feeling light headed or that your going to pass out, some MSers experience both so which is which can be hard to work out.
"Dizziness, as a symptom, is experienced by only 5% of all patients in the early stages of MS, but according to studies, over 50% of all patients will experience feelings of vertigo and dizziness during the course of the disease. Studies also indicated about 10% of MS patients also experience hearing loss, which only exacerbates more the feelings of dizziness and vertigo."
From what you've written, I gather they haven't found anything specifically wrong, nothing to explain why you've been experiencing tinnitus from 16-20yrs. The frontal lobe is not a specific MS location, spots (lesions) are not exclusive to MS either. There are many other conditions besides MS and because the frontal lobes are the emotional part of the brain there are many connections, even a few mental health conditions, rec drugs, ADHD etc have been connected to lesions in the right frontal lobe.
I really think with the information you've provided, MS would not be the most likely explanation over any other, so at this stage please try not to think to far ahead, you will probably have many tests to get through and hopefully something will shed some light into what is causing this.
Andy, if your neurologist cannot explain your symptoms of dizziness and tinnitus, you should see a neuro-otologist (otologist specializing in hearing and dizziness) or an oto-neurologist (neurologist specializing in hearing and dizziness). These are the super-specialists.
Many people (and doctors) are not aware of the fact that migraine can cause dizziness, vertigo, and ear/vestibular problems, not to mention many other symptoms. I don't know your history and I'm not saying this is what you have, only that it's one thing to keep in mind if another cause of your symptoms can't be found. Good luck to you.
(I have unilateral sudden hearing loss with tinnitus and LONGTIME low-level dizziness with a few vertigo episodes. None of it was ever explained, but I finally self-diagnosed my dizziness as migraine-related.)
Hi. Please get your own copies of all your reports of all types.. This includes both MRI images and the radiologists' comments. They are available to you as your right, though you may have to pay to get them, if you are in the US. Usually not much. It can be a hassle going back for past ones, but be persistent. And ask for these tomorrow (today) at the onset of your testing.
You will need this info as you plow your way through the diagnostic process. Let future doctors see all this material, but keep them as your own. Take this from one who's been there, etc.
Tinnitus is extremely common in the population as a whole, though not so much for someone as young as you. Vertigo is also common. Many doctors are not willing to pin these down, so it's not surprising that you haven't gotten answers yet. I'd say you're far from an MS diagnosis, but the new MRI should help.
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