Share your experience with numbness. Get the conversation started.
Share your experience with numbness. Get the conversation started.
I woke up on my 50th birthday 4/12/13 numb from the waist down. I finally went to a doctor and was misdiagnosed with a stroke. Doctor shrugged his shoulders when i asked why i was numb on both sides, sent me on my way and said see you in a year. On January 2014 I was diagnosed with MS, through an awesome doctor, but even she didn’t know why i have been numb for so long. No one can seem to answer the question I have, so i am hoping someone with MS can help explain. In 11 more days (April 12) it will be two years that i have been numb from the waist down. It feels like when you go to a dentist and he gives you a shot. You tap on your face, knowing your are tapping, but feels numb. Has anyone else had this problem for this length of time? And if so did the numbness finally go away?
I woke up last March with a totally numb right arm. Fearing that I too had suffered a stroke, I sought out medical attention. Great Dr. who referred me to an even greater Neurologist in October who diagnosed MS. She had ordered 4 MRIs (2 on my neck & 2 on my brain.) the cervical ones revealed 2 different lesions. The higher one (around C3 or C4) is probably responsible for the arm numbness. If I sit in a straight-backed chair and lean my head down between my knees, way down slowly stretching my neck, my right leg immediately goes all pins & needles. Neurologist says that it’s prob due to lower neck lesion (near C7) I wonder if your numbness stems from neck lesions……
For me, here we go….. Tysabri every month at the hospital. I call it a “Spa Day.”
Today, Dec 1 and the numbness is mostly in my hand & lower arm. My hand feels like it was emptied out and filled with sand. Intense, really intense internal itching. I have scratched my skin open in places without realizing I’m doing it. There’s also some loss of motor control. It just feels weird. My grip is strong, really strong but don’t ask me to pick up a fork because it’ll go flying across the room! I’m a dog groomer. Thank God I’m left-handed, huh? My right hand doesn’t get to handle any of the sharp, pointy tools but I still need it to be a team player. Had to teach my left hand to operate my computer mouse for the days when my right hand doesn’t wanna play ball. Some days that tactic works better than others. Fighting back the fear is a daily goal.
Thank you for your posting on numbness. I am sad that you are experiencing the numbness also. You are the 1st person i have spoken to that is also numb. Yes i do have lesions on spine, neck and brain. I am going on 3 years of this numbness. Nothing has changed, and none of the feeling has come back. It has creeped up to spots in my back also. I am also teaching my left hand to work for my right hand, as in addition to being numb waist down, my whole right side is very week. I fear waking up again, and more of me is numb. As for the itching, i have same problem. The itching feels like it is deep in my legs. And I have to scratch hard. I have also scratched my skin open.
Your experience with “waist-down numbness” reminded me of my own experience when I was 19. Woke up to that same numbness. The Neurologist my parents took me to suspected I had GBS (Guillain-Barre Syndrome), that my over-extended system (school/work) had simply skipped over mononucleosis and went straight to GBS. This was in the 70’s (I’m 4 years older than you 🙂 ) and an MRI wasn’t suggested. I had a spinal tap & a Mylo-gram. Not fun & my symptoms eventually went away without conclusions. Probably not relevant.
This fear of waking up to more symptoms is so real, isn’t it? Everybody tells me that sleep is SO important for MS patients but who can sleep through the night not knowing what tomorrow may bring? For me, the numbness ebbs & flows. When it’s more acute, I suspect sleeping wrong somehow exacerbated the neck lesions, I dunno.
Do you do any exercises to push your muscles? I find myself stretching my fingers or tightly gripping pillows or furniture cushions, just to feel like I’m exercising these muscles, get the blood flowing in my hand. I have no idea if it does any good overall but the fighter in me thinks it’s better than wringing my hands (ok, bad pun!). I’m also pumping my self full of Vitamin B (nervous system food) through juicing as well as vitamins. Again, I have no idea if it’s doing any good. Just trying to be proactive.
By Lisa Emrich Moderator
Hi Pegster and Nancy2015,
One of my on-again off-again symptoms has been numbness in the limbs and I too have cervical spine lesions. When the numbness and weakness were the worst in my left hand, arm, and fingers, I did 4 months of intense occupational therapy. I believe that the specialized exercises helped to build new neural pathways to control the muscles and made me stronger. It didn’t change the numbness, however. Continuing to work the weak areas, especially following the guidance of a specialist, may help you keep some strength and functionality.
About a year and a half ago I started experiencing numbness down half of my left arm and hand extending into 2 1/2 of my fingers. I thought it was a pinched nerve but didn’t have any pain. I had been diagnosed with MS earlier in the year but didn’t connect the two right away. I so wanted it to be a pinched nerve. I finally called my doctor after about a month of this odd numbness and she said it was a lesion in my brain stem pushing on a nerve and it is the nerve that supplies the feeling for the right half of my arm, hand an fingers. I still have the numbness and my doctor says it’s not likely to go away although it might get a little better with time. It’s one of the most annoying symptoms I have.
I have the exact same numbness only it’s my RIGHT hand & arm! Let me guess – lesion is located in the C-3 area? Same diagnosis/opinion from my Dr. Coming up on one year for me. In my case, I’m lucky to be left-handed.I’m also lucky to have a neurologist who’s very aggressive. She’s not ruling out other possible causes including infection. I’m seeing an Infectious Disease specialist Monday, getting another spinal tap Thursday (this time – different testing done) and getting an MRS next week. Never had one of those. Supposed to map metabolic changes. We’ll see….
Wow! I’ve never heard of anyone else with this same issue! I’m right handed so am thankful the numbness is on my left. But I have found that there are so many things I do with my left hand – like when I’m washing dishes, I scrub with my right hand but I feel the dishes with my left to make sure I got all the food off of them. I can’t feel the stuff any more with my left hand though so now I have to put the dish rag down and feel the dishes with my right hand. So annoying! Let me know what your testing turns up. I hope you can find a solution that will solve the numbness issue. The MRS sounds intriguing – let me know how it goes. I just can’t go through all that testing – I have young kids and almost no babysitting support. I have a hard time making even hair appointments let alone MRI’s, etc. Yup, C3 is the issue for me. It was an existing lesion that wasn’t bothering me until a high stress time and then it started to flare and causing problems for my left arm and hand. Ugh!
My feet and toes are almost always numb, it spreads up my legs from time to time and also my midsection goes numb from time to time. The feet are the oddest thing, trying to walk and only feeling an inch or two of them.
Has anyone had facial numbness ?
I have had facial numbness , However only on one side. I also have had some very weird fuzzy numbness in my feet and lower legs in the past week or so; it’s as if my feet and legs have gone to sleep on me, but it happens while I’m laying down and then get up to go for a very short walk around the house to another room. It’s getting to the point where the bottom of my feet start to feel as if they are on fire if I stand up for longer than 5 or 10 minutes. And of course, or doesn’t happen all of the time , but enough now that it’s becoming a regular nuisance on my list of MS symptoms, like having the bladder issues, ms hug, etc. This one scares me more than any , I guess because it makes me afraid that I am on the path to not being able to walk. And that would be abosolutely crushing now as my family is of little help and friends…well, I think we all know what happens when disabled and not able to join in on fun summertime activities because of the heat. That was , for me, at least, when the last of what friends I did have left dissappeared. The facial numbness has only happened to me a couple of times & it was on my left side of my face , it felt very weird, like my face was half “asleep”, but it went away pretty quickly & didn’t return again for probably months later; as I recall, I believe it was winter and I was outside in the cold weather. But still, very weird symptom, and not one I really want to have again.
By Erin Rush Moderator
I am sorry you both have dealt with facial numbness, B.L. and nyxtracey74. If you haven’t already, please let your doctor know that you are having this issue. I know some of our members and at least one of our site contributors have dealt with facial numbness. Here is a little information on numbness that you might find interesting — https://multiplesclerosis.net/symptoms/numbness-tingling/. I do hope you both get some relief from this annoying symptom. And B.L., in light of what you shared about fading friendships, I thought you could relate to this piece — https://multiplesclerosis.net/living-with-ms/ms-turns-friends-strangers-strangers-friends/. I hope it helps you to know that you are not alone in dealing with this change. I sincerely hope that you find a new group of friends and also have a few true friends that support you through the ups-and-downs of life with a chronic condition. Best, Erin, MultipleSclerosis.net Team Member.
hello everyone. i am new here. on october 3 2017 i had bladder retention. gradually i became completely numb in my entire groin/buttock/rectal region. we though cause equine syndrome. mri without contrast was negative. then numbness spread to my right leg and foot, and my left foot. had another mri of thoracic area and a spinal tap, mri of the brain and neck, ct of the pelvis, thoracic and abdomen. all were negative for any lesions, tumors, etc so at the time MS was ruled out. luckily got into a neurologist in two weeks and she is the one that started thinking gbs, hence the spinal tap or shingles of my nerves in my spinal chord, hence the spinal tap. came back with high protein levels but no shingles. she admitted me to the hospital two days later (this is october 22 2017). she and infectious disease dr were working together. they sent my spinal tap from three days before to mayo clinic to rule out any weird type of virus. one piece of blood work came back positive for sarcoid, but all the autoimmune bloodwork was negative. i do have reynauds and my mom has RA and OA. while in the hospital i was treated prophylactically for viral meningitis or other virus and for an autoimmune issue. i receives decadron in my iv as a push, iv acyclovir for 7 days and ivig for three days. after 12 days of bladder retention i could pee…yay!!!! discharged on october 29. two weeks go by and i begin having numbness in my right fingers. all of them. had an emg and nerve conduction study scheduled for november 14. did that and doctor said peripheral nerves were fine but my proximal nerves that are from my spinal column were not. she readmitted to hospital to get another lumbar and cervical mri with contrast and without. i hadn’t had a cervical one yet. today she told me there is a lesion in my servical spinal chord, inflammation and my lumbar area is still inflamed, but no lesions (which is weird to me bc thats my initial numbness.) yesterday when i was admitted she ordered iv solumedrol and ivig again.. but she really believes I have RRMS based on the two areas that are inflamed, the numbness in two areas now. she is sending my spinal fluid to mayo again for more extensive MS lab work. sooooo….i guess this is what I have. i do not have any pain yet, just complete numbness. im not driving right now and am on short term disability. I was an extremely active and vibrant 50 year old female 6 weeks ago. I feel fortunate to have all of this treatment and diagnosis rather quickly. i admit i pushed and pushed. i am going to finish the ivig for the 3 days since i am in the hosptial bc i have nothig to lose . i will finish 5 days of the solumedrol iv’s . i’ll go home and wait for results and take next steps for treatment. long story to discuss numbness! glad to be here!
By Erin Rush Moderator
Welcome, Staceyinga! I am glad you found this community. While I am sorry for your diagnosis, I am glad you persisted and advocated for yourself. Proper diagnosis and treatment are key components of managing any chronic condition like MS well. I hope your hospital stay goes well and you can be discharged as soon as your body is ready. Please don’t hesitate to reach out if you have any questions or concerns and again, welcome! Best, Erin, MultipleSclerosis.net Team Member.
I used to experience numbness and fortunately it went away. Then, after having surgery in December, I underwent two months of physical therapy, which I started at the end of January. I was getting better and stronger. Then, I started getting worse. One morning, I woke up and I couldn’t feel my feet or my legs which makes my weird wobble walk impossible now. I got kicked out of physical therapy. I just don’t know what I am going to do. I live in a condo with outside stairs which I can no longer use and I sure don’t want to be home-bound.
I was diagnosed oct 2003 initially justnumbness hands and feet my numbness never went away just progressed to the rest of my body it’s frustrating but you do eventually get used to it pt helps a lot