Knees feel numb but I can feel them ? A... - My MSAA Community

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Knees feel numb but I can feel them ? Also approved for rituxan!

latellama profile image
35 Replies

Dx'd in late 2016. I've been on Copaxone and Aubagio. Just got word that insurance has approved Rituxan after a 6 month denial and appeal. Good thing since I've had the oddest sensation that my knees are numb, but I can feel when I touch them. Have any of you experienced this? Maybe a new exacerbation? Appt with Neurologist tomorrow.

Hopeful,

KimO.

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latellama
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35 Replies
jimeka profile image
jimeka

I hope you get some answers and I hope the Rituxan works at stopping the progression of your ms. Let us know what they say about your numbness, blessings Jimeka 🦋

latellama profile image
latellama in reply to jimeka

Thank you!

greaterexp profile image
greaterexp

That’s great that you see your neurologist tomorrow. I’m sorry about the new symptom. Let us know what you learn from the doctor. When will you start rituxin?

latellama profile image
latellama in reply to greaterexp

I will! The rituxan was ordered by my rheumatologist for the arthritis with agreement of the neuro. We'll have plenty to discuss today!

erash profile image
erash in reply to latellama

Great idea. Glad they r working together on you!

AlisonQ profile image
AlisonQ

Hi latellama,

I have experienced a head-to-toe numbness since I first started having symptoms. I can feel touch but it's dulled compared to what it once was. Numbness is a common symptom of MS but I'm not sure if my version if it is common.

latellama profile image
latellama in reply to AlisonQ

I've had numbness in my feet and fingers constantly since diagnosed and in my legs and arms at diagnosis, but not only in the knees. Weird. I hope th our numbness fades over time as mine did.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi latellama LTNS! How is the teaching? I hope your Neuro can help with the numbness that's going on. And you won't have to take the nerve conduction test!! 🤗💕

J🌠⛄

latellama profile image
latellama in reply to Jesmcd2

Work has been easier as the MS had stabilized. I've been away as my partner was dx'd with stage 4 colon cancer 1 year ago. It's been a roller coaster. We find out next week if the treatments did the job so he can be restaged. Good to see you all again!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to latellama

I'm so sorry to hear about your partner ! I do hope for the best next week! Please keep us updated!! 🤗💕

KelliJ profile image
KelliJ

The toes on my right foot feel like this. It's hard to explain numbness to people when you can still feel sensation 😜

latellama profile image
latellama

I've had complete block-of-wood numbness before, so its hard to realize that this is numbness too. Thank you for reminding me.

Kenu profile image
Kenu in reply to latellama

My right leg and arm at that way all the time😠. When I am doing things I will see drops of blood and then look around to see where it is coming from? I have to be very cautious and think about it all the time when walking 🚶‍♀️ as I don’t know where my foot is? That’s usually when I have a fall when I get lazy and forget to think about it 😞. Hope things go well for you 👍🙏. Ken 🐾

RoseySawyer profile image
RoseySawyer

I experience numbness alot when I'm overheated or touching something hot like hot water or if I'm very tired and I also get a fire feeling on my feet when I'm on them to long throughout the day. I haven't had that feeling in a long time but it sucks when I do. 😕😊❤🌷

carolek572 profile image
carolek572CommunityAmbassador

latellama Funny that you post about this because I was mentioning to my husband this morning that my left knee felt all puffy and swollen but looking at it, it looks perfectly fine. I am curious as to what your neuro has to say. Keep us informed.

Be Strong,

Carole :-D

latellama profile image
latellama in reply to carolek572

Sometimes my knees feel like volleyball, but they don't look swollen.

Raingrrl profile image
Raingrrl

starlight5 ...sounds like you have the same numbness that I have. Its only in my legs from just below my knees and in my feet. Its like this deep numbness because I can still feel some things on the surface. I can feel light touches or the pin poke the neuro does during my routine exam. What I can't feel is the vibration from the tuning fork he also uses in the exam. So strange. He told me at my last exam that he thinks that the numbness in my feet contributes to my problem with falling. Its like I'm missing some sensory input.

erash profile image
erash in reply to Raingrrl

When assessing sensation, vibration is lost before sense of touch. It’s often what we check with diabetics if sharp/dull is still preserved or we check what’s called 2-point discrimination. So your vibratory deficit makes sense.

Raingrrl profile image
Raingrrl in reply to erash

Thanks erash ! I didn't know that. Its the weirdest thing to be able to feel some sensations but feel numb at the same time. I call it schitzo sensory perception.

erash profile image
erash in reply to Raingrrl

Hmmm...I guess I have that too, schizo neuropathy and the odd thing is it can vary from day to day. Some Days the frozen coldness goes from my toes to my knees and other days it’s not there at all

Raingrrl profile image
Raingrrl in reply to erash

Same with me. Every day is different...the joys of MS!

latellama profile image
latellama

Update: Neuro says my symptoms are probably related to sleep deprivation since symptoms don't last more than 30 ish hours. So referral to urologist to eliminate the need to get up every 2 hours. Then a sleep study. Huh. MRI before I start rituximab. So now we know. ;)

bxrmom profile image
bxrmom in reply to latellama

Glad you got some answers. Hopefully, the urologist and other tests will get you more answers and back to feeling 'normal' 😉 Keep us updated when you can.

Jessie

erash profile image
erash in reply to latellama

Sounds like ur neuro took a good history and approached holistically rather than throwing a prescription at u 👍

congratulation on the Rituxan approval. I've had 8 infusions of Rituxan and after my 7th one my neuro told me my ms is now stable. No new lesions and no new activity. I only have ms and use Rituxan as off label. I am curious if Ocrevus would work for arthritis as an off-label use, lol, probable not since they have Rituxan for that. You mentioned you've been on Copaxone and Aubagio, is your neuro taking you off any of these since Rituxan works so well for ms? My best wishes for your partner, I hope his cancer goes into remission. I have numbness in my legs and both feet, I didn't find Rituxan to change that but it may have stopped it from spreading. ~terry

erash profile image
erash in reply to MS_Indestructible

Curious, how often r ur rituxan infusions? Is it every 6 mos like Ocrevus?

latellama profile image
latellama in reply to erash

Mine are scheduled for every 6 months

MS_Indestructible profile image
MS_Indestructible in reply to erash

yes, once every 6 months

RoseySawyer profile image
RoseySawyer in reply to erash

Every 6 months. 😊❤🌷

latellama profile image
latellama in reply to MS_Indestructible

Yes, I will get to be off all other meds. This makes me so happy.

Raingrrl profile image
Raingrrl

I don’t really have stiffness or spasticity in my legs. I do have neuropathy in the same numb areas in my legs and feet. I take gabapentin and have acupuncture as remedies. They help the neuropathy but not the numbness. One really weird thing that happens is that sometimes I get the sensation that my foot is slipping or skidding a little when I walk. It’s as if the surface is wet but when I look down its dry. It’s so strange.

erash profile image
erash

Hmmm...I guess I have that too, schizo neuropathy and the odd thing is it can vary from day to day. Some Days the frozen coldness goes from my toes to my knees and other days it’s not there at all

RoseySawyer profile image
RoseySawyer in reply to erash

At this moment my feet and all my toes feel frozen. 😕 Hopefully they warm up. 😊❤🌷

AlisonQ profile image
AlisonQ

Mine is a strange numbness as well. I can feel a pin prick but it's dulled. also pain sensation and cold sensation is reduced.

in the last year, I have pain when my hands or feet get hot or cold. That is very annoying. Also, i get burning sensations in my hands and feet. Strangely, those sensations started after i began after I started the aubagio so I'm not sure if it's related to the meds because that is listed as a side effect.

latellama Numdness is, generally, an initial symptom for MS. Treat your feet with any massage equipment, to remove the numbness "feeling".

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