I cant taste anything, I just tried to posion my boyfriend with too much salt in the spagetti bolognaise. It just tastes bitter to me with very vague hint of tomatoes. I developed spinal and brain lesions nearly 4 months ago and I am now on rebif. Hopefully its just a blip. I could taste this morning! I thought I was getting a cold because I have had bad headaches for the past few days and like sinus pain. My face has been a bit twitchy. I hope it’s just a blip but I properly cant taste- everything is just bitter. Do other people have this? Could it be a drug sideffect perhaps?
Hi Cookie Monster. Yes, I had this - was one of first symptoms that led to dx. I then had it again about two months later but that time was only cold food and drinks that tasted weird. Kind of off. Was reading about parasthesias. Apparently taste is an uncommon one but is recognised. Mine was related to relapse and not drugs. I’m on rebif now but wasn’t at the time
Hi sunflower77 thanks for your reply. It is hard not being able to speak to someone- I would worry all weekend otherwise. I had double vision last year but it resolved I have a terrible headche this morning and my temperature is up- I dont suppose rebif is helping that. I feel a bit reassured. Think I’ll cancel a few things this weekend and take it easy! Thanks again
I get this, but usually just before/during a migraine. You say you’ve got a terrible headache, could it be that?
Hope you start to feel better soon x
How long have you been on rebif for cookiemonster? Raised temp and headaches are common side effects. However, combined with th sinus pain and things tasting funny could be a virus or infection? Do you suffer from sinus infections? I did (funnily I’ve not had one for a couple of years) and the pain is awful. How are you feeling today?
i lost all sense of taste for about 6 weeks earlier this year-its mostly back. on the plus side i lost over 4 stone-and its stayed off because my appetite has not come back. (my head was ‘frozen’ so it was more complicated than just losing taste)
hope all sorts itself out for you
I’ve been on rebif for 3 weeks- tookmy 3rd dose of 22mg last night. Ill take 22mg next week then onto 44 mg as maintenence. I had this transverse myelitis lesion and multiple brain lesions with a very bright lesion near my brain stem. My cranial nerves om this event have been fine. I have had terrible fatigue and general muscle aches and pains. 2 frozen shoulders and I’ve been off work since july and im desperately tring to pull myself together. I worry that ive been misdiagnosed with rrms cos I havn’t really recovered. I was diagnosed with hypthyroidism too which is a worry with the rebif. How was your head frozen Ellie?..
‘frozen’ is best way to describe it. u know at dentist u get frozen feeling-well 3/4 of my head felt like that. i could feel nothing! so lots of choking cos i had no idea where food/drink was in my mouth. i thought i could just try to swallow and hope that it went down-but its more complicated that than-as speech therapist told me! i suppose numbness is common with ms-i never expected 3/4 of my head to be affected! it was scarier for those watching me as i have lots of ‘rare’ symptoms and nothing surprises me anymore. what does surprise me is the ability of the body to try plan b (tho somethings i have got to plan p/q!!! lol)
ps i was never offered dmds and just had my 3rd dose of tysabri yest-no positive changes yet but its early days…