New to the site, new symptoms

Hi everyone,

My name is Danielle and I was diagnosed with RRMS at 16 in 2011.

I recently relapsed and now have nerve pain through out all of my body but last night my legs and feet, mostly the right foot, began to feel almost weightless. I want to say it was almost like numbness but still able to feel and walk, although at least once I felt my foot drop. Has anyone ever experienced this weightlessness in their limbs?

I'm currently waiting for an MRI on my T-spine.

Thanks in advance :)

25 Replies

  • Hi Danielle. I'm Angie. I'm sorry, I haven't experienced weightless; mine has been heaviness. My thighs, arms and lower back get the worst of it. I hope they get you scheduled soon and get you feeling better.

    If you don't mind my asking, how do you stay or get in a positive mood? I was diagnosed in 2013 at age 44 and managed to feel sorry for myself. You were sooo young when you were diagnosed. I can't even imagine how you delt with it.


  • Hi Angie! I hope you feel better too.

    well when I was first diagnosed and put on Rebif, a lot of new symptoms came out. I couldnt stand for too long or walk too far. the Rebif side effects kept me bed ridden and honestly I got to a point where I didn't want to get better. I went through holistic treatment doing cell therapy and taking whole food vitamins and I was the healthiest I've ever been. Of course I'm not advocating against medicine but thats what worked for me and i was in remission for about 3 years. Now I just stay positive reminding myself to some extent this is out of my control. and theres no use in stressing about something you can't fix. I also laugh at myself a lot. When I don't get my way I jokingly say "but I have MS!" lol Forcing myself to make a joke is really whats getting me through these new symptoms.

    I really hope you find something that puts you in a better mood, its tough.

  • Hi Danielle,

    I'm wondering if your doctor is quite sure about your diagnosis? I'm asking because you seem so young. It's a shame to have to live with that MS diagnosis so early in life. Did you ever seek out a second opinion?

    As Dpaige said too, I haven't felt the leg sensation you're describing but there has been heaviness and sometimes complete loss of sensation. Sometimes, strangely, I can still walk even when I have no sensation. Other times both legs have been paralyzed but luckily for only a short time. Heaviness is what I get much more often, and in the last couple of years a sensation that my legs aren't under my control if I'm walking.

    There are braces for foot drop. I've had some foot drop episodes but haven't yet looked into whether I might need a brace of some kind.

  • I recently asked my doctor that question, if there's any chance it could be something else but he told me he ruled everything else out. I have optic neuritis and since that goes hand in hand with MS I don't doubt the diagnoses very much.

    is it possible to have your spinal cord affected and NOT have paralysis in your legs? :( with the weightless feeling I got the other night I got so so scared that I'd lose feeling in my legs

  • Yes, your spinal cord can be affected even though you haven't had paralysis in your legs. Also, there are degrees of paralysis. Part of you can be paretic--numb, having paresthesias, maybe immobilized now and then, heavy-feeling. Paresis = a condition of muscular weakness caused by nerve damage or disease; partial paralysis (from an online medical dictionary).

    Having paresis does NOT mean you'll eventually be paralyzed. In fact, if part of you is paralyzed for a time, it might go away. I've had several episodes of paralysis that went away.

  • I learn something new every day, thank you! Sometimes I don't know whether something is MS related or not so I hesitate to call my doctor a lot

  • Don't hesitate to call your doctor with ANY questions. That's what they're there for. And if he doesn't like it or doesn't give you answers, then get a neurologist ho specializes in MS who is willing to give you the time you need.

  • Most of my lesions on are on my spinal cord, and I one on my brain stem that causes the problems with my legs and arms. I believe that the symptoms expressed depend on where in your spinal cord the lesions are.

  • Hi Sukie! I just had my MRI on my t spine this morning and I'm a little nervous. Can you tell me what your symptoms are? I'm having issues in my legs, almost like weakness or like they're about to but not quite cramp up and it makes walking feel funny. I wish I could explain better but I don't have the language for any of my symptoms and I'm hoping anyone might have some idea :( I appreciate your response!!

  • My legs are fairly numb from the upper thigh basically through the foot and toes. I can feel someone touching them inside, but not on the skin. I have to walk with a cane and sometimes my legs ache so much that I walk with them bent. I need to use a cain or walker for balance. I do get very bad cramps, usually mid-calf or in the foot. Sometimes my leg muscles go into spasm and start to shake badly, as in tremors. My left side is more impaired than my right. My legs also get very fatigued, and that's when they start to tremor. Everyone is different, though, and I have never met any two people with the exact same set of symptoms. You didn't say anything about your arms, but my hands and arms are affected as well. Most of it comes from the lesion on my brain stem, but I also have herniation of the discs in my c-spine and some in the t-spine, which is likely a product of age. Hopefully you are way too young to be worrying about disc degeneration. I know a lot of people just rave about Ampyra as it is made to improve walking in MS patients, but it gave me seizures. I am, however, very sensitive to medicine so that's not surprising. Again, everyone is different. Good luck, honey. I am so sorry that you got this at such a young age.

  • Hi Danielle! My first episode was when I turned 20 years old. Similar to what you are describing... My left leg from my hip to my ankle went numb, I realized it when I was shaving my legs but couldn't feel it. I was attending undergrad at the time and went to my local campus physician, who rolled a pin wheel down my legs without me watching, and mentioned I needed to see a neurologist. After a significant number of scans, blood work, and spinal tap my neurologist at the time diagnosed me with transverse myelitis... Come to find out now it was my first attack of RRMS.

    There wasn't much they could offer then except steroids, but my neurologist wasn't convinced it would necessarily help, and at my age of 20 there was a greater likelihood of my body healing and regenerating myelin on its own. So I passed on the steroids, and continued to focus on overall wellness...specifically nutrition, exercise-I found swimming to be the best, and relaxation-yoga, meditation, being in nature.

    After 3-4 months the sensation disappeared, but when I had my most recent art known 2014 I had and still have reoccurring tingling in my right leg when walking fast or long distances, and the same started to happen in my left hand.

    I would be sure to let your neurologist know immediately with these new symptoms, as they might be able to give you a steroid infusion to lessen or stop this current attack if it is MS.

    Best wishes, and if you have any questions let me know! I know this diagnosis is a challenge and the people who understand it best are experiencing the same thing.

  • Thank you for your response!

    curious, did your doctor say that the tingling in your left hand was MS related? Asking because I am having bad nerve pain in my hands and my neurologist referred me to a rheumatologist whom I have yet to see because he says nothing can explain the pain in my hands, even if my T-spine has lesions. :/

  • My tingling in my left had improvedover time, and now I get small sensations. They do believe it is MS related, but it's not nerve pain.

    I wonder about neuropathy, most people get it in their feet, but sounds a lot like what you are experiencing. It can be caused by diabetes, but they don't know much about other causes, but it is very much different than MS.

    Sounds like it might be advantageous to see if you can get a second opinion from a different neurologist...

    Wish I could be more helpful, :(

  • @Dpaige I use turmeric spice (organic) in two- three meals per day, or I drink it as a tea.

    Check with your doctor, it's a blood thinner in some people.

    2-3 Tbs turmeric in a tea bag

    1 C warm coconut milk (almond milk is good too)

    Steep for 3-5 minutes

    Add cinnamon to taste, I use 3 Tsp myself

    Add honey to sweeten

    Cinnamon lowered glucose that honey increases, so it balances them well.

    Turmeric spice goes well on vegetables,,beef, chicken, pork, fish-

    The key here is to try to reduce inflammation- so research foods that cause it and foods that help decrease it.

    I eat strictly organic, GMO free foods..

    I was diagnosed in 1993 w/ RR.

    I've had two 7 year stretches without relapsing, medication free.

    I tried Copaxone and Tysabur but I feel sick on those drugs.

    Today I feel healthy- yay!

    I hope this helps you as much as it's helped me!!

  • thank you very much! I'm going to try this.

    are there any foods in particular I should stay away from or any absolutely should have? I'm glad to hear you feel healthy today :) feel a little extra healthy for me please

  • @Dpaige You're very welcome! Thank you too!

    I found eliminating Surat completely was very helpful. For myself, if I eat it, I crave it for about 30 days afterwards. Yikes. Lol

    I limit red meant, though I also have ITP- a red blood cell problem- so I actually need to eat some to prevent heavy bleeding.

    But in the average person, red meat is known to be an inflammatory producer.

    I limit carbohydrates from grains like pasta, rice, and breads to no more than 15 go within a 3 hour time frame. That's one slice of bread. Not easy to make sandwiches with 1 slice. Lol

    I definitely recommend eating tons of organic vegetables. Most help reduce inflammation. Keep in mind some like carrots, corn and white potatoes, have a lot of natural sugars, so limit these to measuring a real serving size.

    I also limit dairy products- i switched using cow milk (half-n-half) to using Goat milk, in my coffee. This was to help my son's ADHD- it has less Casen (sp)-a protest that can aggravate hyper activity. Not necessarily an MS problem. However I lost weight faster by cutting out most cow dairy products.

    I hope this is helpful.

    I agree with DeeAma too.

    Except I drink 1 pot of organic coffee daily. It helped me overcome constipation.

    Pay attention to how your overall body feels after eating. Maybe keeping a journal to track what feels good, what feels uncomfortable.

    I haven't required a single antibiotic ever since cutting GMO's off . I used to develop sinus infections annually.. Today if I sense any signs of one, I eat 3 tbs of local honey, three times per day.

    Maybe the sinuses cleared up after I eliminated cow milk? I'm not sure.

    But I also stopped developing yeast infections from antibiotics, used to treat my sinus infections.

    Ironically, after I switched to organic foods, the yeast infections never reoccurred following antibiotics.

    Chickens were typically feed Cipro, an antibiotic, and maybe this was why I had chronic yeast, including thrush in my throat? I don't know for sure, but I'm very happy not to get them any more. Lol

  • I appreciate your response very much!! I'm going to keep your advice in mind. To be honest, ever since childhood I've had a horrible diet and to no surprise can't remember actually ever feeling healthy. Lol the sugar part is going to be the hardest I think. The makes me happy to hear you've found something that works great for you though. I hope I gain the discipline to follow a similar diet lol I'm going to make a list and head to the market for some organic veggies and turmeric! Thank you lots :)

  • @Dpaige I can relate- I used to work in fast food, and ate it daily. Ugh! I had a sweet tooth too. Chocolate was my downfall.

    If I eat sugar in any form, including bread, I crave it for 30 days. It's so addicting. So I feel your pain, concerning trying to quit the habit.

    Wishing you good luck! Eventually you'll be able to live without it. Take it one day at a time. See how you feel, and if you start feeling stronger, it will be worth it. 😺

  • Sounds very similar to what I am doing. One question I was told to stay away from caffeine ( coffee) but my doctor told me that it is fine to have my one cup a day. Do you drink decaf or regular coffee ?

  • I agree, to stay away from inflammatory causing foods.

    For me I know a few things make my MS worse, and new research is finding that MS could be related to our Digestive Tract Microbiome (basically the healthy bacteria that helps us digest in our GI system).

    I don't drink any alcohol, no caffeine, less sugar, less salt, no dairy, and no meat. Fish seem to be fine. I feel healthier, and have less sensations by eliminating these!

    Hope this helps!!

  • Thanks DeeAma! I'm gonna try cutting these things out of my diet. Hopefully it helps, I'm happy to hear diet change works for some!!

  • I also stopped dairy and land animals 2 mos ago ( after dx) I really feel more energy and I also see a major change in my skin and I am not a puffy anymore 😊 These days there are so many alternatives for dairy and meat it is amazing !

  • Hi, Dpaige. So sorry to hear that you are now a member of the club nobody wants to join. Although I have never experienced a weightless feeling, my legs and feet and my hands are numb and tingly most of the time. I get horrible nerve pain in my left shoulder, arm and leg, and my doctor has me on Lyrica for that, which I take anyway as a migraine preventative. When the nerve pain hits, I just increase the dose of Lyrica and it does seem to help, but it has some unpleasant side effects at higher doses. I also suffer from depression, and I am on Cymbalta for that but it also helps with nerve pain. If it gets to be too much, I get nerve blocks which provides temporary relief. Good luck!

  • I'm sorry I replied to your other response before I saw this one! Does lyrica make you drowsy? I've tried it once, and I remember it putting me out for a couple hours. Another question, what's causing the pain in your arm? My doctor told me he can't explain the nerve pain in my arms and hands and that it doesn't sound like MS and referred me to a rheumatologist that I have yet to see. I apologize for all of the questions, I feel like I still don't know anything about this disease lol

  • Hi ,

    My name is Teresa. I am new to this site. I was diagnosed 23 yrs ago. One day I woke up tingling from my waist down. I was able to move but as I walked the tingling was worse. Eventually it spread to my whole body. I could barely wear clothes. I was diagnosed with Peripheral Neuropathy. I did get some other symptoms such as fatigue. It took awhile to also be diagnosed with RRMS. For many years I took Tegretol which helped. I now take neurotin. I also take Copaxone and Zanaflex. I find that it is very important to keep moving. I exercise quite a bit. When needed I rest. Don't give up. You're young (I'm 62 yr young). I go to support groups and have very close friends. It's a journey with windy turns. 🌞

    PS good luck with you're MRI

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