By Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego We spend so much time discussing alterations in sight and tactile sensations (e.g. pins and needles, burning sensations, electrical sensations, itching) in MS that we often forget that the other senses may be affected as well. I thought I would briefly discuss these for you today. Acute hearing loss during the course of MS is relatively rare, although I suspect it occurs far more frequently than the reported 10 % incidence would suggest. Hearing loss at the onset of MS is even less frequent (1%) and often suggests another disorder masquerading as MS. Hearing loss may occur in isolation but is more readily associated with the multiple sclerosis when accompanied by other brainstem symptoms and signs such as vertigo, weakness or sensory disturbance on one side of the body, facial weakness or sensory disturbance sometimes opposite the affected side of the body, or incoordination of a limb. Unilateral hearing loss is more suggestive of an MS related cause, but MS may also rarely cause bilateral hearing loss. Many patients report symptoms such as tinnitus or fullness in the ear that may fall short of “hearing loss”, but still negatively affects auditory function and quality. Hearing loss is almost always caused by inflammatory demyelination in the part of the brain called the brainstem where the auditory nerve (also called the eighth cranial nerve) enters the central nervous system, or in the auditory pathways within the brainstem. It is said that high frequency hearing loss is more common with involvement of auditory nerve entry zone and tract, whereas low frequency hearing loss is more common with involvement of the auditory brainstem pathways. When hearing loss occurs acutely in MS, it often recovers along with other symptoms of a relapse after treatment with high dose steroids. However, like other symptoms there are some people who recover very little and are left nearly deaf. Tests can be done to determine if the hearing loss is caused by a problem in the cochlea (the inner ear and therefore not caused by MS) or the brainstem (more likely related to MS) but these tests are rarely necessary in a person known to have MS who experiences hearing loss. Altered smell and taste are reported more frequently in people MS (up to 2/3’s of people with MS may experience diminished smell perception and discrimination). Altered smell may even be a presenting symptom of MS, presenting either as diminished ability to smell (hypoguesia) or unpleasant abnormal smells (odors misinterpreted as smelling like gasoline, for instance). Rarely, patients will present with both altered smell and taste suggesting another problem such as a viral infection or a consequence of smoking. Altered taste can take many forms including inability to taste only sweet flavors, only sour or bitter flavors or both. The abnormal taste may affect only one or both sides and when it affects both sides the type of taste affected can differ on the two sides (i.e. sweet taste affected on one side and sour bitter tastes affected on the other side). In most situations people do not notice loss of taste when it affects only one side. Loss of or distorted smell is noticed with greater ease than loss of taste and often affects a person’s perception of smell as well. The proportion of people with MS who experience a decrease in smell perception and discrimination increases with the duration of disease and is related to amount of demyelination (white spots on MRI) in the inferior frontal lobes and temporal lobes of the brain. Not infrequently the diminished sense of smell is associated with problems controlling emotions or behavior, staying on task, planning activities or thoughts and seeing them through to the end. Both altered taste and smell have a large differential diagnosis. Common reversible causes of diminished smell include the common cold and other respiratory viruses, allergic rhinitis, chronic sinusitis, malnutrition and smoking. Other causes readily excluded by history, examination or imaging include head trauma, frontal lobe or suprasellar tumors, normal aging, Alzheimer’s disease and Parkinson’s disease. Diminished taste may also occur with common viral infections and with smoking but is particularly common with certain medications; for instance, most MS patients have noticed the bitter taste that occurs during the administration of high dose steroids to treat a relapse. Other correctable causes include vitamin B12 deficiency, zinc deficiency, and dry mouth either from medications or a disorder of salivary glands such as Sjogren’s syndrome. So the next time someone tries to tell you that MS does not affect hearing, smell or taste pull out this blog and educate them. But never assume a problem affecting these senses is related to your MS without a thorough evaluation by your MS Specialist.
Suzanne Shultz
4/4/2015 10:28:34 am
I can't tell you what it means to me to find this "site" and information on hearing and smell. I had exactly as you described (fullness, hearing loss, left with ringing in ears) years ago before ever being diagnosed with MS. An ENT took scan of ear and that's it. Was left with no answers. He was sure I had a tumor on the nerve and wanted me to come back again but I was tired of getting no answers, so I never went back. Years later, I was diagnosed with MS. I still have the hearing loss (I suppose because it was never treated) and terrible ringing in the ears, which seem to have gotten worse lately, along with this new "strange" almost floral-like smell and wacky taste buds. I hope to learn more from your site. Thank you so much for posting. I printed off this article for my neuro I am going to see next month. It's just nice to know "I'm not crazy". Suzanne Shultz
Diane Seaward
7/21/2017 07:39:00 am
OMG, I am thankful for your post also, as I have just (3 days ago) been diagnosis with Mild MS. An audiologist sent me to an ENT Specialist who in turn sent me for an MRI, as there was nothing in my ear, no water, no wax just a fullness and hearing loss in my left ear. and ringing in my ear. I received the results from the neurologosit and still cannot believe it. He indicated that my first episode was probably 15-18 years ago.
Ri An
12/17/2015 02:21:20 pm
I have very diminished smell perception, pins and needles sensation with itchiness on feet and hands, and optic neuritis in the last 8 months but my MRI didn't show any lesion. My neuro-optalmologist believe my chance of having MRI is close to never. He also didn't think olfactory loss is correlated with MS. Is it time to get a second opinion?
Noelle
9/26/2018 08:24:06 am
I am in the same situation, I have no sense of smell, taste not affected at onset, tingling in hands at night, had an MRI and no lesions. 15 years ago I had an issue with not being able to empty my bladder, found by accident by my OBGYN, went through a month of tests, but they could never figure out what the problem was. 9 years ago had issues with my vision prisms, occasional loss of some or all, for short amounts of time, DR. said it was Ocular Migraines, told me I was lucky not to get the headaches with it. I now am having a weird smoky taste in my mouth, still can't smell, tingling still there. After researching MS I realized all my symptoms are associated with MS. I have not gone back to the Dr. yet, I am afraid since my MRI was normal they will just give me the run around. Any advise on a next step? I was diagnosed with RA when I was 7. Still have the RA and now have Fibromyalgia and Chronic pain. I am 40 now. I get chronic optic neuritis. I had droopiness in my face that lasted about 12 hours. One week later it happened again but was a little worse. Dr said probably Bell's palsy. MRI showed white matter whereas my MRI from a year ago did not. Now a week ago I had severe pain in right ear and lost hearing in that ear, have almost no sense of taste or smell, and my right leg is numb in the thigh area. Dr said swimmers ear. Does anyone think this all could possibly be signs of MS??
Deborah Jones
5/10/2017 02:43:38 pm
It does sound like MS. I have the disease, and have had numerous symptoms over the years, and currently. I sometimes cannot taste food at all, but my sense of smell seemed okay. Other times, both my taste, and sense of smell do not work. I have had food poisoning because of these problems, and sometimes there is a metallic taste. I think this is what is known as sensory deficits. My symptoms are too numerous too list, and I am tired right now, but I hope I do not get sick from what I just ate, because someone just told me my food smelled rancid. Also, my refrigerator is non working, and I cannot afford to buy a new one.
joann
6/6/2018 10:34:24 am
I have been diagnosed with MS and have impaired taste and smell. I can now usually eat extremely hot food like ghost peppers and before I always had to get mild and sometimes it would be to hot. I can also eat extremely sour foods with little to no reaction. I need my food to be boiling hot or my food taste cold.
Noelle
9/26/2018 08:26:06 am
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