Newly diagnosed and Numbness

Hello!

I was diagnosed with MS in January 2016 so I am still adjusting to my new normal. Mostly MS has affected the right side of my body with my right leg taking the brunt of it. For the last month or so, the toes on my right foot have been numb but still have feeling (contradictory? yeah, I know). I would like to know if anyone else suffers from lasting or temporary numbness, describe how it affects you and how you cope with it. Right now I am wearing open toed shoes in November (brrr!) because shoes make my whole foot go numb. Maybe it isn't due to the MS at all but I don't know what else it could be. My Neuro and I are working on it tho. Hello, MS, my new bestie!

Skip

Promoted Content

Get email updates from MSAA

MS news, local educational events, vital programs & services

Subscribe now

Promoted by My MSAA Community

63 Replies

oldest โ€ข newest
  • Hi and welcome. You will find that we are a big family and always welcoming new members. I'm Lynn.. I was just given a tentative diagnosis in August 2016. Your symptoms are almost identical to mine except mine have never let up or gone away it's started in my right side now is primarily in my right leg but my left leg is also affected. Both legs go through various stages of numbness tingling toes sometimes feel like they're disconnected. If I'm up for too long that I have like electrical shocks that don't hurt but go for my feet to my knees sometimes even further up to my hips and back side. Shoes are definitely a big problem, I run around the house and really soft socks and when I have to go outside I have rubber soled slippers that I wear with the socks, but it feels like there's a half a cup of sand between the socks and the slipper soul. I got a pair of sketchers that have the memory cushions soul that are comfortable but now that it's cooler weather I can't wear them with socks and I even went up a full size for extra comfort. The cold seems to exasperate all symptoms. Keep on coming

    back!!

  • Your description is very accurate! The cup of sand, that is a good one and the disconnect. That's how it feels under the toes of my foot. Sometimes it's painful even to the touch. I hasn't let up in over a month even after a heavy dose of steroids, so I am worried that it is here to stay. I also have the electrical shocks and tingling up my legs to my lower back if I've been busy through the day. I cannot squat long because it makes that feeling happen immediately. Thanks for your reply!

  • Sorry that you've also got the pain too. Mine is very, very uncomfortable at it's worst, but I can't say it's super pain. Pain to me is either one of the 2 back surgeries I had or a total knee replacement I had 2 yrs ago.. They gave me morphine in the hospital and 10MG Vicodin for after. I weened myself off of that in a relatively short time. I've found that keeping my feet and legs warm either with heating pad or laying in bed with electric blanket on helps with all the feet and leg symptoms. Getting to where I hate to go anywhere because I don't want to get dressed..

  • Hi, I echo what Lynn says. Mine too is my right side and by the middle of the afternoon it's like carrying 2 concrete blocks from my knees down. Like you my toes and right fingers go numb, but I have still got sensation. It's weird. I too wear sketchers or I found some cheaper eqivalents called diva rafts. I go through a pair a month with me dragging my right foot around all the time, I wear the sole of my shoe out.

  • Jimeka, I found some cheap knock offs at Walmart for like $11.00 that look like men's loafers.(maybe they are men's) They have the memory foam inner soles like sketchers and are pretty comfortable. I'm wearing them now with soft socks. I've gone up a size in all shoes now, can't stand anything tight on any part of body. Starts the tingles all over..

  • I too don't like anything tight, I get too hot, then we know what happens. I need to look for some lace up shoes so I can wear socks. Been out today in my summer shoes, 3*c outside but can't get used to socks.

  • I found some leg warmers on Ebay and ordered a couple of pairs. Will let you know how those work out. I also just wear slippers most of the time.

  • I wear the dives raft shoes as slippers, around the house, but if it is dry out I where them outside as well. My right foot is ice cold all the time, my doc says it's something to do with circulation but I don't pursue it as I have enough to contend with. I hope your leggings work for you, keep me posted. Anyway how are you coping, have you looked at any trikes? What's your weather like where you are? Cheers Jimeka

  • I'm doing well Jemika. I'm not driving, so I putter around the house. Most of the time I am crocheting Christmas gifts for all my grandkids. Will post a picture when they are done. I live in northern California. This week has been beautiful, high 70's Fahrenheit, low 50's at nite. I can walk about 1/4 block to the gym for swimming laps. We live around the corner from a small shopping center so we have most of what we need close by. What about you?

  • Calfeechick, I bought some leg warmers on Amazon $11. Would love to know brand u found on eBay?

  • I'm not sure of the brand. They were only a few dollars a pair. I think they're coming from China. So we'll see if they're any good.

  • I have the "electrical", not painful, little zings in my hands. I've dropped a couple things from them, and when I'm typing at work I'll "stutter" a letteror two on the keyboard when it happens.

    The only real (permanent?) issue I have is a sometimes pounding, sometimes tolerable, headache for 10 mos.....

  • I'm sorry you've joined the 'MS club,' but so happy you found us, vduckery. We hope you feel our warm welcome.

    I experience a myriad of sensory issues, including 'numb' sensations here and there. The foot or leg isn't clinically numb because I do feel the pin when my neuro pricks me with it. But I don't have the problem with wearing shoes that you do. Because of foot drop and related tendinitis, as well as unrelated arthritis in my feet, I must wear really supportive (Dansko and motion control tennies) shoes at all times. I attribute the painfully cold sensations in my toes and feet to poor circulation.

    Gabapentin helps calm my sensory issues. Elavil was tried years ago, but it 'zombied' me out all day and made me ravenous. But it works for others.

    I hope your neuro has an answer for you.

  • This has been a really informative post for me.

    Why is it numb but we still feel the poke? I've wondered about that. It's a weird feeling.

    Does anyone else get bad numbness if they put there feet on something, I have this box under my desk, it's always worse in certain positions. I wish I understood my body more.

    I don't get pain pain (unless, sort of, sometimes in my feet, like little daggers). My only real pain is on my good/strong side. I'm assuming from my awkward walk and taking up the weakness of my "bad" side.

    I also thought maybe it was only me that things got worse as the day goes on. In the morning is usually pretty good for me but as the day wears on, depending on the day or how much I've done, the numbness/weakness is much worse in my bad side. It's not always constant all day (sometimes it is though).

    Sorry you are having problems too.

  • Certain positions can make it better or worse. I was getting a pedicure and I had my foot hanging over the little flip thingy they use and the numbness went away. My foot felt like is was mine for a few minutes. It was awesome. I can't wait to go back but it's a double edged sword because all that manipulation of my foot was driving me crazy. I had to stop the massage part. It wasn't all painful just sensation overload. I already take Gabapentin but it doesn't help much.

  • It's a bummer we share symptoms but it always make me feel better I'm not the only one. My body no longer makes any sense but I keep trying to understand it. I don't like the feeling of not having control over my own body. Hugs.

  • My numbness is a frost bitten bilateral burning from toes to knees. Better if I keep feet warm (leg warmers, ski socks, chemical stick on heat pads like those used for camping). I also get right hand numbness but not sure if MS or an ulnar neuropathy from leaning on my elbow. Gabapentin and Lyrica make me a zombie. And it's nothing compared with the pain from my trigeminal neuralgia--so I choose not to medicate.

    Last night was the first time I could tell it was affecting my driving. Feet felt like I had wooden blocks and kept slipping off the gas/brake pedals. Was scary because I couldn't see very well, was unfamiliar with my destination and lots traffic. Too dangerous. Will refrain from night driving ๐Ÿ˜ฌ

  • Waving Hi vduckery and welcome to our "little" chat lol Sorry it's for this reason though. I was dx'ed last Mar of '15 and lm still adjusting to the new "normal" and that changes everday.

    As far as your feet go? All l can tell you is to ask your Dr about gabapentin or Lyrica. Those seem to work the best for most. I don't feel my feet at all. They fell asleep and never woke up.

    I also have to wear socks with my braces at all times, incase l cut my foot lol. But l find sketches sports work the best for me.

    I also have found that my arches have fallen so l got arch supports that really help.

    Welcome again :)

  • The outer left side of my body (outer two toes, outside of my leg and hip, outer side of my arm and left outer side of my face) went numb thirty something years ago. Numb but I still have some feeling, as you said. It definitely was my MS. Sometimes it is just slight numbness and sometimes it feels like it has a swarm of bees on it. It used to bother me but now I hardly notice it, unless those darned bees are buzzing, then it it can be a bother.

    Hope yours goes away.

    PS. I tried bug spray but it didn't help. Just kidding!

  • Too funny, Morilyn! ๐Ÿ˜‚ I never thought of using bug spray when the spiders were weaving webs around my calves. Brilliant! ๐Ÿ’ก

  • I'm so glad you found this wonderful group!

    I can relate to the "somewhat" numb feelings. Mine tend to come and go, but I was interested to read what others have said about shoes and warmth. Shoes I've worn just fine now make my left foot numb, especially after walking a bit, so I wear slippers around the house, sometimes with wool socks. I've nearly always had cold feet, but that has definitely changed since dx of MS in Sept. It seems a paradox that heat generally increases MS symptoms, but localized heat seems to help me quite a bit. I have my heating pad warming my bed before I get in, since I can't sleep when my feet are cold.

    Though we certainly are each unique in our symptoms, we share many of the same issues. I pray yours are few and mild.

  • Hi vduckery! I have the exact same symptoms. I take Gabepetin ( not sure of spelling) and am on Tecfedera. I also have the feeling of being drunk alot of the time. I get dizzy and my face feels like its on fire. Do you experience any of these symptoms? Does anyone? I feel like I am in a world of my own. :)

  • I haven't had the drunk feeling but I've never been drunk so I wouldn't know. But my brain fog is real! I definitely can't concentrate or remember anything. Not sure if it's menopause or MS, probably both! My legs and hands sometimes feel like they are on fire. I have electric shocks and I can relate to the bees feeling mentioned by Morilyn (gonna by some extra strength bug spray and see what happens). Fortunately my face hasn't been affected yet. But who knows, I could join your club any day. It really has been great to read these comments. I don't feel so alone anymore. My dad has MS too, so we swap stories often which helps. He is totally immobile now so that's a little scary. I know this is the 'snowflake" disease so everyone is different. For me, everyday is different LOL!

  • I like that, Snowflake disease.. we are all unique and the same๐Ÿ’•๐Ÿ˜Š๐Ÿ˜„.

  • I'm sorry about your dad, and so sorry for you too. I can see how watching him decline would frighten you. It would me too. But as you said, we are all different. And because MS is like that, it continues to give me hope.

  • Thanks Tutu!

  • Another new member to our family. Welcome Jammer1969 :)

    I also get vertigo and the hot flashes. I do know the vertigo is caused by MS. Since l have been dx'ed l have had the whole red faced hotness. Mine starts in my chest and burns up tho. Now that it's getting cold, l can just go on the porch to relieve it a bit.

    Welcome again :)

  • In my research, I read somewhere that our bodies lose the ability to regulate our body temperature, hence what we call hot flashes.. I stand I the garage at night to cool off and many times lay in bed with the electric blanket on covering just my feet, keeping cool by having window open.๐Ÿ˜Š

  • I didn't take the AC out of the window for the longest time. Just because of the hot flashes. I also still keep my neck wraps in the fridge just in case. I know when the holidays come and the house gets full l will be burning up. I'm taking no chances lol this is one thing l can control :)

  • Thank you for the welcome! I wish I could just go outside. If there is any change in temperature, I break out in a rash. I feel like I am living on Benadryl. I haven't had the chest burning but I have great sympathy for you!!

  • Yes! The face on fire-even with fire red cheeks! After ruling out rosacea (and I'm post menopausal), my neuro believes it is due to MS autonomic system involvement.

    I sometimes sway when I walk (like a drunk), but not as much as I did years ago when MS started. I often have a whoozy lightheadedness, which then affects everything. Sometimes it is so bad I can't drive.

    Are you new here, Jammer1969? If so, we're glad you are here! Well, not glad you have MS-just happy to meet you.

  • I am new here and since reading everyone's posts, I don't feel so alone. I am having a hard time getting certain family members to understand everything that is going on with my body and that I can't always do everything they want me too. So, thank you everyone for sharing!!!

  • That can be a difficult thing to do, Jammer1969. I hope they are open to learning more about MS and how it affects you, even when "you look so good" or "you were able to do that yesterday."

    We're 'happy' you're here. ๐Ÿ’•

  • only since 1986... one of the Monster's favorite souvenirs to leave behind... it's Ok, it comes and goes, and we just do things by rote... hard thing to explain just like sooooooooooooooo many MonSter symptoms... WELCOME TO THE CLUB, even though you'd not choose it... FAITH NOT FEAR, darlin'!!! xo Cj

  • Hi there, I'm not yet diagnosed but have experienced numbness. I've had 2 major attacks and lost feeling in my core ( in a band around my stomach/back area ) both times, after extreme 'buzzing', followed by weakness. I 've been v. lucky to have got a reasonable amount of core strength back after a while ( think flailing beetle stuck on back during worst phase ! ) It was odd... I had legs and an upper body but this 'gap' in the middle where the two didn't seem to join ! It was strange trying walking, driving hips from an area that was numb - no feedback . I've had other 'patches' : tailbone, right thigh, right shoulder etc. Nothing major permanent but my right toes tend to 'leave me' at times. Sometimes it feels like cool water flowing through them, reminds me of the film title 'A river runs through it' ! I have suffered from very cold hands/feet in colder weather for yreas. My sis has had the same problem with cold hands/feet and was diagnosed with Raynaud's syndrome ( another auto immune problem ) so it is possible some of us have this too ? x

  • The right side of my body going "numb" was how I was finally diagnosed this summer. It was as if my skin was "thawing" from novacaine. Cold, wet sensation when touched. Couldnt feel the warm water in the shower. Anyway, after 6 weeks, little by little I "thawed" out. Turned out I had developed a lesion on the right side of my spinal cord high in my neck. That was when I was diagnosed. I had a complete recovery from the numbness but I have other very small issues popping up here and there. My Neurologist attributes them to that lesion. I go for my next MRI in December to check for any new lesions. Best of luck to you!

  • Isn't MS weird? I often wonder if it is because no two people experience the exact same symptoms that they've had a harder time figuring this disease out. I have sensory issues, but nothing like you have described with the thawing, cold sensation.

    Chowell71, I see you were recently diagnosed. I'm sorry. I hope you find new friends and answers here. We look forward to your contributions too! See, you've already taught me something new and I've had MS for 25 years.

  • Thanks Tutu :) And yes, it is very weird! And confusing....now anytime something isn't "right", I blame MS. And a lot of it actually IS from MS...but I'm sure it all can't be. And then there are days...hours...that I feel as if there was a mistake in my diagnosis. I guess it's still pretty surreal to me. I come on here to read new posts almost daily to gather as much info as possible. Reading the medical websites isn't always as helpful as hearing things straight from people actually going through it. You've all helped keep me sane ;) THANK YOU!!!!

  • Just curious, I was also dx in August with numbness, tingling down right side then the left. Only treatments I've had were 2 courses of high dose steroids. I've been told I have 1 thoracic lesion and others in the brain. Did you get your recovery after any treatment or did it go away on it's own? I know we're all different, but always hopeful. Lynn

    #CalfeeChick

  • The only symptom I still had by the time I got into the Neurologist in June was my head ache. I still have it. But the numbness and tingling (it actually got painful in my right hand) was all gone by the time I got in. The headache started the last week of February and the numbness followed a week later in March. By the end of May I was back to "normal" w/out treatment. I am currently on Amitriptyline for the headache and recurring joint and nerve pain etc...it helps for all, but the headache seems to come and go at will.

    By the way you worded your question, it sounds like you still have the numbness and tingling? Yes, everyone is different. Hopefully yours will fade away the same way it faded in, like mine did. We did steroids for the headache too. They didn't help that either. I'm sorry I don't have anything too encouraging to say. And I hope it's not too unbearable for you right now. I know it wears you down. This is an awesome forum and full of friendly "faces" and a plethora of info! Chin up, you're among friends here :)

  • I still have all of my original symptoms just with less intensity. Mine started like I ran into a brick wall in less than 12 hours I went numb from my rib cage down on my right side and then my whole left side the next morning. I thought it was a stroke so we went to the ER. It actually took over a month of lots of tests etc. before I go is giving a tentative diagnosis.

  • I guess I should consider myself fortunate. Mine was only on the right side w/ the exception of my left eye. Yah, I thought I slept wrong on my neck. I noticed in on my rib cage first because I couldn't feel my bra on my skin, then when I showered I couldn't feel the water on the right side of my scalp and parts of my neck and face. I didn't lose any functions so I was convinced it wasn't a stroke. By day 3 it was my entire right side so I made an appt w/ my PCP who almost blew me off since he thought it was just the same thing I had seen him for the year before (my limbs falling asleep while I slept), once my mother and I convinced him this was completely different he didn't even examine me he just sat there talking to me while facing his computer screen (after that appt I changed PCP's), he told me he COULD order me an MRI but it was probably going to tell me something I didn't want to hear anyway, so instead he was just ordering a CT scan without contrast and X-rays of my neck and back. Needless to say they showed nothing. He did put in for a referral to a Neurologist and two days before that appt, they realized they didn't take my insurance. So it was a run around and then my symptoms were gone before I ever got the Ophthalmology appt, the Neuro Feedback appt, & all the MRI's done. I have to say I LOVE the Neuro I have, tho. She is so sweet. And tentative. I hope she never changes practices!

  • I'm coming to think most gp's just don't expect to diagnose MS. After the ER, we went to my ortho doc, he ran tests, MRI'S and xrays. No cause found and he recommended to see a Neuro. My first Neuro was a dud. Called me on phone with mri results, saying don't be upset, I'd had long life. I'm 68, and plan on many more yrs. Because of my age, he referred me to UCSF where I've got a great new doc and will get all test result and decide on treatments then..

  • Wow, sounds like that first Neuro pretty much wrote you off! That had to feel horrible! You DO have many great years ahead of you. Not a good time to be just brushed off like that. I'm soooo glad you have a good doctor now. :)

  • I have numbness pretty much from the waist down and in my hands for many years ! I know what you mean when you said it's hard to explain how you can have pain and still be numb it's just one of the perks of MS lol๐Ÿ˜€ You just learn to live with & be careful with hot or sharp items check for blood that's the only way I can tell that I have cut myself ๐Ÿ˜Š

  • Yikes! You have to be extra careful, don't you, Claudmich? Are you new here too? If not, please just ignore me. I'm still struggling to keep everyone straight in my head. But if you are, welcome. I'm happy to meet you!

  • Yes I am new to this website but it I think that it is very nice!

  • Hello Claudmich Welcome to This Wonderful Web Site. I hope you can find it helpful as others have. *smiles*

    I had to laugh at the looking for blood part, Not at you of course, but at myself when l stepped on a Lego and didn't even know it. I was bleeding all over the carpet and couldn't figure out where it was coming from.

  • In July and August, when my feet felt encased in ice blocks, I actually broke the same toe twice.. Each time, it hurt like heck, then joined the other numb toes.. didn't hurt until the next time I hit it on the bed frame. Guess that's a benefit of the numbness..

  • After reading about feeling no pain and not knowing of injury until you actually saw blood, I kind of wish I was numb. Did I really say that?!?! ๐Ÿ™„

  • I have the same problem. I have PPMS and it affects my right side. My arm and hand have limited movement. I use the right hand mainly as a support when opening a jar or anything else that needs stabilizing. I can not hold anything in it. My right leg is also bad, and my foot is permanently frozen. I wear an AFO for foot drop although I am mostly in a chair now. I used to be a righty but now I am a lefty. I now write and print left handed, eat with my left hand and even type left handed.

  • How long have you had MS Howard? My dad's name is Howard and he has MS too. I always tease him and say thanks for sharing! I know he feels bad that I have it too and he thinks he's kinda responsible but I assure him there's no way of knowing that but I'm sure it's because we ate the same food. LOL Seriously tho I try to keep him from feeling like that. He's totally in a chair. It only affects him from the waist down. I'm affected on my right side but mostly just my leg and foot.

  • I'm sure your dad appreciates the humor, vduckery.

  • Howard0425, I'm amazed at how well you have adjusted and made the best of a not-so-good situation.

  • Howard, I'm impressed with you adaptability. Taking what's dealt to you and overcoming it. You are versatile! I'm with the others, great name as Howard is my husband's name. I haven't been given a stage as yet, just preliminary DX then many tests, MRI's, spinal tap, nerve conduction tests, and lots of blood work. Neuro appt in about 5 wks to get all results and make decisions on treatments. Keep on joining us Howard. Lots of great folks here and very helpful..

  • I was diagnosed in 2007 with MS. No name but I was given a boatload of literature and asked to pick a DMD. I was confused and also did not know anything about MS. I called the Cleveland Clinic Mellon Center for MS for help. They did not like the MRIs and had me redo them. In April of 2008 they diagnosed me with PPMS and said there were approved DMDs for it. There still are not any drugs for it. I have become my own advocate. I also try to stay busy at home, doing chores, looking at this site and MyMSTeam. Plus I go on MS World and other sites. Hoping for the best for you.

  • Howard, It's great how you have found some great ways to combat this. Thanks so much for sharing your story. I love hearing how we've all gone through so much to find our MonSter. I have been complaining to my GP for nearly 5 years trying to tell her that something just wasn't right with me. I have been diagnosed with a gamut of illness, most of which my neuro and I have discovered I don't even have. Finally, in August 2015 my whole right side went numb and my GP said "I don't know what that could be, have you tried going gluten free?" REALLY??? I saw another doctor who thought I had injured my shoulder because I lift weights often. He insisted on x-rays and physical therapy even though I told him repeatedly that I did not injure myself. chiropractor who says that I had a pinched nerve but at least recommended that I see a neuro. Finally, I had to beg my GP in a late night email to send me to a doctor who could help me. She sent me to a neuro in December 2015 who told me I had a stroke. He did think it was strange that I had no other symptoms or risk factors to have a stroke and that my lesions are right sided and my symptoms are right sided which aren't characteristic of a stroke. He sent me for more tests and finally told me that I probably had MS. I went to another neuro in January 2016 for a second opinion who finally told me it was definitely MS. I am still seeing the second one. I am not OK with a "probably" type of doctor. I need more definitive answers than "probably" or might be. So here I am almost 1 year later learning to cope with my MonSter. I am currently taking Aubagio since February 2016. I haven't had any issues with it so far but we are watching my liver because my enzymes are starting to rise. I am terrified of needles so I am worried about having to switch DMTs. Copaxone is the only other one I think I am willing to try next though if necessary. I am glad to have found this site. You are all such a wealth of information. Connecting with real people managing this disease is just what I needed.

  • Hey howard0425 it's amazing how fast we turn amidextres. I had my left hand in a cast during the school year. They wouldn't let me out of finals go figure, hahaha.

    Welcome to the room btw :)

  • Hey again, just reading your profile. I was diagnosed in March of this year. It is mostly on my left side. And my toes tend to get numb at night. I take copaxone shots 3 x week. So I think the numbness is ms. I am like you shoes not very comfy. Socks with plast lines are good around house and when not too cold barefooted! I see neurologist inMonroe, la , which is about 1 1/2 hours from here.

  • Vduckery- Isn't this fun? I have had a right leg/foot that has been numb/tingly like it's almost asleep for a lot of years....since an auto accident in 1989. I was told it was nerve damage....may heal-sometime but it will take a long time-if it does...now I get a herniated disc and have experienced what I think is drop foot. Saw neuro and ortho yesterday. No answers. Neuro wants to run an EMG on the leg/foot next month. Both Drs. seem to want to say it is the other Dr.'s area of expertise! But ortho will run another test to see if shots in my back will help the hip pain that I am having which is apparently related to the disc herniation. I wonder if the numbness tingling could be because of the herniation.

    The numbness you get used to after a while. It becomes just a minor annoyance! Mine is in my right foot and almost up to the knee.

  • Wow! This is soooo much fun! I hope we both figure out what is causing this. I know the I too, have run into the doctor carousel where each say it's another's area of expertise. It's so frustrating not to know whether it's really MS or something else. So many issues mimic others.

  • MS is funny yet not so funny disease. I asked my dr. about my right side being affected. She told me some people have right side damage, some left side. Some are damaged in both arms, some in both legs, others have left arm and right leg or vice versa. That is one of the reasons it seems no two people are alike. I do the best I can with what I have been dealt. Happy Happy Joy Joy !

  • Hi vduckery, welcome to this wonderful forum! My neuropathy is a sensation of frostbite in my feet to my knees. It's everyday but some days worse than others. Keeping my feet warm helps. Look forward to you joining our discussions ๐Ÿ˜Š