Symptoms & coping mechanism

[Jenjus]

So I've been experiencing random parts of my legs having cold sensation and banded type feelings. I've also been experiencing my tongue and bottom lip feeling numb but not to the point where I cannot talk. I'm constantly worrying about my vision which feels like there's blurred spots from time to time but I was told I had dry eyes.

It's been well over 2 months of me experiencing these and my doctor will not prescribe me with anything. Instead he wants me to just start the Kesimpta.

I'm beginning to wonder if I have RLS and want to know if there are any coping mechanics to the uncomfortable sensations.

So far, I've been managing with meditation, stretching and baths.

[Jesmcd2 CommunityAmbassador]

Why don't you want to take the Kesimpta? 🤗💕🌠

[Jenjus in reply to Jesmcd2]

I guess not trusting the doctors and lack of blood test preparations.

[Helpmeup]

There are a few things to keep in mind. If you follow your doctors advice and start taking Kesimpta, it will not help with symptoms. The DMTs are meant to slow disease progression, not treat ongoing symptoms. Also, it's good that you are doing meditation and stretching. It's very important to keep those muscles moving. You did mention taking baths, and although baths are very relaxing, hot baths can temporarily make your symptoms worse. Heat intolerance is extremely common in MS. 🤗

[Jenjus in reply to Helpmeup]

Yes, so I've been trying to find a best way to cope with these uncomfortable leg feelings since it wakes me out of sleep 😣My doc keeps telling me he can't prescribe anything at this time and wants to do an MRI of my spine. Maybe this will give us some answers but it's been challenging managing the dull numbness pain.

[CatsandCars]

You could try calling the manufacturer of Kesimpa - look it up online by searching Kesimpta patient contact Japan, Novartis patient contact Japan, etc. I tried to do it for you, but all the results were in Japanese so I couldn't tell if it was what I was looking for! You can ask if they recommend any blood work ahead of time. (Ocrevus didn't used to require it). You could even ask them if they know of a doctor to see. You never know.

[Jenjus in reply to CatsandCars]

You're the sweetest!!! Thank you for this valuable info. I have so much uncertainty these days and this good around with the MS. I'm constantly doubting information.

[CatsandCars in reply to Jenjus]

You definitely shouldn't have to worry about your doctor not knowing what to do. I am sorry I'm not more familiar with Japan's health care system, referrals, etc. If your worsening symptoms are pretty new, like the week or two, I wonder if you could go to the hospital and see if they will give you steroid infusions or help you somehow? Good luck to you. I hope you can find better care.

[Jenjus in reply to CatsandCars]

No need to apologize at all!! I was able to get a referral to a specialist hospital so we'll see if I can seek better care there.Thank you for your support ❤️

[CatsandCars in reply to Jenjus]

Yay! That's amazing. I'm really happy for you. Let us know how it goes! ❤️

[kdali]

It sounds like MS symptoms. I had a thing I called "cold socks" with my feet for a while; a tight, painfully frozen feeling. It was wild since the skin was warm and pink. I would see an ophthalmologist, if possible, for any vision change. If you don't like the idea of Kesimpta, but wish to be treated with MS medication, there are several other options. They all work to prevent new damage.

[Jenjus in reply to kdali]

I was thinking it could either be MS or anxiety or RLS. But this has been going on for 2 months now and the only improvement is my coping mechanisms.I'll def keep monitoring my vision though!

[irhunter]

I’ve bought a monster massage gun. For the RLS, I’ve found a quick hammering on the outside of my quads will slow or stop the RLS for a while. Of course, a stretching program should help also. That’s my 8pm nightly routine.

Good Luck!

[Jenjus in reply to irhunter]

Thanks!!! Def looking for a good massage gun.

[Writter]

kesimpta is good for all the people? it is an oral tratament or it is inyections?

[Jenjus in reply to Writter]

Sorry to just be posting this; so many ups and down emotions.Kesimpta is an injection much similar to the insulin shots. It's self administered and is injected right underneath the skin.

I would recommend consulting your doctor before starting and medication.

kesimpta.com/taking-kesimpta

[CatsandCars]

There was just a discussion on here about RLS.healthunlocked.com/mymsaa/p...

Health Unlocked also has a group for it; they get pretty deep into conversations about meds and things. But if you want to check it out, you can use your existing user name.

healthunlocked.com/rlsuk