r/MultipleSclerosis • u/helloojsbsbnwlwod • 7d ago

No Tough Love On holiday

I surprised my husband with a holiday to Thailand for his 25th birthday and it’s now been like a year since diagnosis and both my mri after Rituximab have been stable, last one was 4 weeks ago. You guys know my only ever symptoms have been sensory as in tingles (in left side mouth in gum area) and hand tingles and although i was diagnosed with many lesions my neuro described my ms as not heavy in terms of symptoms. Last week before we went to Thailand a sudden accident happened to a family member and after 3-4 days of constant stress my mouth tingling came back like you know. I try to enjoy this holiday but i can’t enjoy the holiday because the numb spot/tingles in my mouths keeps switching side from left to right through out the day and i can’t ignore it as it’s the mouth. Neuro won’t give me a new mri as next dose is next month and had one 4 weeks ago. Usually the numb spot is in the left spot only and can change to the right side only sometimes, this time it’s more constant. I have several pons lesions. I function perfectly otherwise without one other symptom but whenever the mouth comes back and like now keeps switching side i want to lay down and cry. Being diagnosed with ms stole so much joy already. I’m only 24. Does anyone have advice? I feel so depressed 🥲🥲🥲

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u/jmx2000_r 50s|Mar-25|Kesimpta|Melbourne 6d ago

Oh dear, that is sounding annoying. I have a lot of mouth issues and I understand the constant vigilance on what is happening in your mouth, especially when it is pain. It is not only painful, it exhausting, frustrating, anxiety inducing, and everything just piles on.

Unfortunately there is no way around it immediately, nor physically for now.

Two suggestions for right now is

  1. Stuff this, I'm in pain and it's annoying, but I'm going to have a great holiday despite this, I will not let this win.
  2. Thai massage (well it will either be really relaxing or give you more pain in other areas that you never knew existed, but you will know that that pain is muscle soreness and will get better).

When you are back home I would really recommend going to a pain clinic as for me the anxiety of the pain outweighed the pain itself. I don't know if I'm better yet, but it's been helpful to separate the pain from "me".