I started developing symptoms 2 weeks ago.but the one that worries ne is the difficulty swallowing. Ive been to ER twice over it. The last guy gave me a steroid to help. But my neurology appt ain’t till January 10,2023…im hoping its something different but my legS Arms and feet will go numb and then the inside of my mouth 1×s too
I am diagnosed as MS since nearly 2 years ago and I have started getting numb around and inside my mouth for a little while now. Initially I too got steroids, the usual prenisone thingie, and at first it got better, but as soon as I stopped it slowly came back and kept getting worse. Doctor reluctantly did another smaller round of steroid pills, and again it help a bit, but returned afterwards. Started talking about me perhaps imagining things. That is at least one thing I have learned from this forum, state clearly and strongly your ailing and what you need done, then you will be more likely to actually get things moving.
Finally getting a contrasting agent MRI in 2 weeks with talks of changing to a stronger medicine if needed. Last 2 MRIs showed nothing new in particular so doctor is brushing me off with “old wounds acting up, no treatment needed”. Hopefully the contrasting agent will prove that wrong. Getting numb in the tongue is downright terrible.
But to answer a little more relevant to your case perhaps, personally my attacks have all started in rather small areas and then spread little by little while the level of prickling and numbness increased. Like one finger for example. Then the tip of the next finger, then the hand under those 2 fingers, then the rest of the arm same side, then shoulder, etc etc. Or a little in the corner of the lips. Then more and more of the lips. Then tongue and cheek. Etc. Others might be different of course.
If the steroid you got was prenidsone or whatever it’s called, then it’ll help a bit quite quickly if your issue is due to immune system attacks like indeed MS, though perhaps not fix the problem. If the steroid is something else then I do not know. If the steroid doesn’t help even though it is prenidsone you might simply have something else, seems a lot of brain or nerve related illnesses cause numbness and such. MRI and like spine checks etc will make it clearer, so well it sucks but you probably have to wait until January to really find out. Hopefully you can get an MRI and won’t have to wait another half year for that.
Best of luck!
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I just had to go back last night and get more. Couldnt eat or drink or take my other medicine prescribed before all this started. My tongue and inside of my mouth went numb thursday too. My mom who also has MS told me it was all innmy head- so i dont believe shes had this symptom yet. My throat gets sooooo heavy. Anyway. Im calling the neurologist today to see if he has a closer appt cause going to the hospital just for the steroid is awful they wontngive me a script cause, "theres no diagnosis… " its very fruestrating. I appreciate your responce it really helped cause these days i feel like you have to diagnose yourself before getting into the actual dr. Its just like sometimes the swallowing reflex aint there at all. Its the worse feeling to me. Sitting down my symptoms worsen.
I’m very sorry to hear that you have such a hard time, but I am happy if my endlessly long reply could help even a little. I thought it might be nice to at least have a little bit of perspective for comparison and such. Even though every person has their own MS, there are often similarities it seems.
One thing I have particularly noticed and wanted to try to explain was that my symptoms have mostly started in very tiny areas and then expanded, like I can almost feel the exact point in my lips where the damage has arrived so far and then tell quite clearly it was damaged on one side and not yet on the other. And then little by little it’s like the prickling feeling and numbness takes baby steps into nearby areas. I have not had very big areas go boom damage all at once, for my own feeling (though the wounds in my brain certainly look large, so it could definitely just be coincidence.)
I do also like you mentioned have different levels at different times. Generally I feel numbness in my hand and tongue when I wake up in the morning for example, and then late morning it calms down, only to return early afternoon. Annoyingly enough it is generally weakest when I go to see the doctor! “So where do you feel it?” “err well right now I can’t really feel it…” “ah so no problem then eh, byebye.” Has happened every simple time I had an attack so far so that is pretty frustrating.
I guess you can at least tell your mother I have tongue numbness with MS I suppose, but my doctor also tells me it’s probably in my head so I guess I could be proven wrong at the next MRI and just be actually going insane on the side.
I do find my symptoms are generally worse when I relax very much, and better when I go jogging, even if just a little bit. That might be a little similar to you sitting down.
And yeah going to the hospital just for 1 “small” thing sucks, it takes time and effort to get there and it is also not exactly light one the mental state to be heading such a depressing place so I do sometimes hope they would help make it a little easier. The head neurology nurse at my hospital always makes me feel like I am just wasting everyone’s time, and that doesn’t exactly feel very encouraging either. Feel free to make my disease disappear so I won’t have to bother you anymore, I sometimes feel like saying to be honest.
But yeah, numbness in the mouth sure is horrible, I can only send you my deepest sympathies. I was worried when I lost the feeling in my leg for awhile, but losing the feeling in my tongue is just soul-crushingly horrible. I like baking and cooking in general and such so being unable to enjoy food and drink is mortifying. Crossing my fingers that you’ll be able to get that diagnosis.
Have to give it to my Japanese hospital there at least. They nailed me to the bed basically and scanned every nook and cranny of me to the point where I can just about sleep through my MRI scans, and they explicitly forbid me from leaving until they had a diagnosis and a choice of medicine ready. Loneliest two weeks of my life, but nice that they hammered it out of the way properly at least.
Hi taliabrush1988; while you are waiting on the neurology appointment, ask your GP for a referral to the Speech & Language Therapy dept. at your nearest hospital. S< don’t just deal with our ability to speak, they deal with the entire mouth, throat, vocal chords, swallowing, saliva production mechanism.
I have issues with swallowing and was referred to the S< dept. to determine which part of the swallowing process was causing the issues that I have.
It is important for them to evaluate which part of the swallowing process isn’t doing what it should; this will also help with the neurological aspect of the condition.
They are also in the best position to advise you on how best to tackle the swallowing issues you have.
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hi
i want to come up with a long emotional post with words of encouragement for you guys, but i can’t find the right words
so i’ll just say that i get you, i know how hard this is to deal with!
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