MS without lesions? Is it possible?

Posted , 39 users are following.

Hey all.

I've posted all over this site for possible reasons such as fibromyalgia and neuropathy; and spine; and MS; and now my neurologist has me back to MS.

I always felt like I matched the symptoms anyway (vertigo, blurred vision, gait disturbance, electric shock) but after a years worth of testing, this is my last stop - spinal tap.

There have been no lesions on my brain or entire spine and my neuro told me today that she is basically lost. She said that I'm in the age group for MS so that's what she's looking at.

I'm disheartened as its been an extremely tiring and long year. I've had so many tests.

Does anyone else have experience with no lesions but possible MS? I have no one in my family with MS either.

Any input would be appreciated. Thanks.

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  • Posted

    I realized I have not done an update here.

    I was diagnosed with Fibromyalgia by the rheumatologist I saw a month or so ago. He said it's possible it's something else as well but he really doesn't feel it's autoimmune. So as for now, I definitely have Fibro as I match all the symptoms.

    My eye doctor did recently notice that my optic nerve in my right eye is pale and that my vision in both eyes has went from -2.75, -3.00 to -3.75 within a year or two.

    So is it something else as well? Maybe. But it's a waiting game.

    • Posted

      Have you had your vitamins tested? I'm awaiting results from vitamin B12 I do have ms, spinal problems and the same symptoms as you. Check out your vitamin Deficiency B12, D, magnesium, A and zinc. You can get serious neuro problems with a deficiency including visual. Good luck

    • Posted

      I have, actually. They're not in the range of being low like that. Wish it was that easy! Hopefully yours was just vitamin related!

    • Posted

      Hi no my vitamin B12 us ok Dr said. In fact funny i just saw this as I'm having a bad night, legs going crazy and I went to the loo to see blood all over my foot, I don't know what I've done mustn't have felt it. It's so annoying it must be my ms but Neurologist said not. Wishing you get your answers 💜💠

    • Posted

      Not being rude, are you over weight? I am, i weighed about 280, im 5'8. Once i started doing water workouts, i lost 20# in one year--huge 4 me--my optic nerves started to heal. My balance & twitches got a lot better too. Optic nerve still looks great!

  • Posted

    I too have all th ms symptoms but no diagnoses yet and no lesions. Done brain MRI and lumbar. I am headed to Mayo clinic on Nov 1st. I'll let you know what my results are when I get back. Good luck everyone.

    • Posted

      Did you get your entire spine MRI? Can I ask you where you are based? I lost power in my left leg last week and lost focus in my left eye. Are you going to the mayo clinic privately? My doctor is referring me back to a neurologist who I have v little faith in.
  • Posted

    Hi, I had an MRI spine and brain in April. I have ms and I thought I was in an episode, my neurologist says not. No new lesions and I'm left feeling like a hypochondriac. He did say I've got spinal stenosis and asked for me to be referred but I've yet to get that appointment despite him sending my GP a reminder, she on the other hand had asked me to find another Dr despite the fact I hardly go to her. It's just made my anxiety worse. I hope you can get answers as I know the frustration. Good luck

    • Posted

      Thank you!! Hope your anxiety lessons for you. Stay strong!
  • Posted

    Yes. I'm in same boat. Have not had spine examined just brain scan. But I have all the symptoms of MS. The numbness and lack of control in my left leg be disturbing. I get blurred vision hen it attacks, and alot of neck pain. Frequent urinating, fatigue, low immune system. Electric currents running down my legs. I have been given a diagnosis of CFS and FM.

    • Posted

      All these symptoms that are so hard to pin point. I feel like I've just accepted the fact that it is what it is which sounds terrible but what else can we do, ya know? I've heard sometimes it can take years.

  • Posted

    Hi hayhue,

    Im new to his forum as Im also new ad of ay with a MS diagnoses. Ive had major symptoms for 9 years with them being unbearable since June. My MRI also shows no lesions however after numerous blood test, I recieved the dreaded call today. If you dont mind me asking, what blood test have you had?

  • Posted

    Holy crap, sorry about all of the misspellings lol My phone has a mind of its own.
  • Posted

    Hello all 

    I just found this thread and know it’s old so I may not get responses but was so happy when I found it to see that I’m not alone and not CRAZY! I too have literally every MS symptoms known and have had clean normal MRI’s my dr will not order a spinal tap yet which makes me crazy. It’s been 3.5 years of no answers. And of course all my symptoms just keep getting g worse most noticeably my double blurry vision and vertigo. It’s so bad I walk with a cane because my balance was so bad I was falling and ending up in the er constantly. My anxiety if through the roof because I never know if today will be a good day or a bad one and even on a pretty high dose of pain meds I’m in constant pain. I haven’t been able to hold a full time job in over two years I’m barely getting by and can’t get disability because I don’t have a diagnosis yet. They did say it could also be peripheral neuropathy but I recently had a nerve conduction study which came back normal. Then I think the dr’s actually don’t believe me! One thing I learned was that my attitude affects everything so I have really worked hard on trying to be happy no matter how I feel and try and always have a smile on my face and be as positive as I can which has helped my team of mind in this horribly difficult and painful time but in doing so I think my dr’s don’t believe how bad the pain and problems are because I’m saying them with a smile it’s like they need me to be screaming or crying to take me seriously. Aaaaaagh

    I know you all know my pain. I do hope you all feel better, get answers and have better days but thank you all so much for sharing and helping this girl feel less alone you have no idea what it means to me!

    Take care and be well! 

    • Posted

      Wow it is so good to know I’m not only one. Getting ready to hit one year anniversary of what’s been the worst year of my life. MRI’s show only one lesion so doctor says he doesn’t know. I have so many symptoms of MS he’s baffled. Just had a lumbar and getting results in a week and a half so we shall see if that shows anything. Meanwhile I’m numb on my left side, my left arm is always freezing cold so this time of year is the worst. I have memory and coordination problems. And just recently I keep getting pretty bad dizzy spells that last for about 30 secs but then I feel sick after. It has changed my whole life. I’m very depressed now and have severe anxiety. My mood is s**t. I’ve lost friends and my boyfriend of eight years. Life has been pretty miserable. I’m trying to be more positive but it’s really really hard. I hope the lumbar shows something. The not knowing is very hard. 
    • Posted

      I'm new to this site. Wanted to share my story. For almost 2 years I experienced tingling in my right arm. One morning in February 2017 I woke up dizzy as the day progressed my vision became double. Went to ER that night they gave me a CT scan sent me home with a vertigo diagnoses. I went 4 more days and my vision got worse. Went to eye doc she said this is a brain thing. So back I went to the ER. They did a MRI found 1 leasion. Came into my room at the ER and said you had a stroke. They admitted me. Neurologist came in the next morning looking at my MRI and stood there and argued with the doctor saying this isn't a stroke this is MS. Then all the test started. I had every test done for a stroke. In the mean time the neurologist ordered a lumbar tap and a MRI of my spine. No lesions on my spine only lesion I had was the one on my brain. I was eventually discharged and sent home with a stroke diagnoses and all the stroke medications you can think of. I followed up 4 weeks later with the neurologist I saw in the hospital. I had to wait a whole month to get my lumbar tap results. Longest 4 weeks of my life. my results were that I had MS bands in my spinal fluid. At the appt she started talking MS meds. I said I don't want to take meds. I don't want to even have this horrible disease. I heard the side effects of these kind of meds were horrible. Fast forward to Late september went back to see my neurologist and agreed to start meds. I begged and begged to be on the med with the least side effects. He told me this med is givin to pregnant MS patients. So he agreed to start me on copaxone 40mg injections 3 days a week. It took a couple months but I feel sooooo much better. When I was diagnosed I felt alone. I couldn't understand why me? I am 41 and have 4 kids 19, 15 year old twins and a 7 year old. 2017 was a horrible year for me. Please please reach out to me with questions if I can help anyone that is or has gone thru what I have gone thru. 

      Take care,


    • Posted

      jaime, I have had four mris. No lesions  but there are some dark spots on my brain. Also my spinal tap fluid is 5 from the lumbar puncture. i also suffer from osteo and rheumotoid arthritis as well as a seizure disorder.  its overwhelming. 
    • Posted

      agreed Katie.. I have been feeling so down lately and if you ask too many questions they look at you like you are crazy. 
    • Posted


      I read your story and if you really don't mind me asking for help I would really appreciate it.

      A person that I love has been suffering from many MS symptoms for a year now without a diagnosis. He has seen more than 6 different specialist, all of them telling him they have no idea what is wrong with him, among those 2 or 3 have been neurologist, but the one who performed the MRI on his neck, brain and spinal cord is from an MS special center. His answer after the last MRI  of his spinal cord that came normal was "No, you do not have MS, this might be all IN YOUR HEAD". They don't want to do a spinal tap, they won't let him to change to a different specialist within the center. They don't think is MS because his balance is normal and he doesn't seem to present any cognitive nor evident eye problems by the time he consulted for MS( although at this point he is having some nearsightedness / farsightnedness). The three MRI has been performed with a space separated in time of almost 2-3 months.

      This person has been suffering physically and emotionally because he is unable to do work outs at the gym or play sports as he used to and now he is seeing his life being ripped apart.  I am suffering for him too because I know how much it means to him to be able to use his muscles and body to keep active because that is also my way to free from stress....not to mention the pain he is in some times, and I have seen it with my own eyes, and I have seen how they hands shake, how his muscles get tight from the weakness. 

      He tested almost normal for EMG, and all blood tests ( not sure for how many diseases they tested for) but they all came out normal except for Vitamin D that was lower than normal. He has been taking supplements for a while now.

      He also seems to have severe allergic reaction to gluten. He breaks in hives, and gets terrible headaches after. He is trying to leave gluten at all but is taking him time to learn all products that can contain gluten.  We have both been doing research trying to find a possible cause.

      But the more we look into it, the more desperate we get, the symptoms and the disease course resembles a lot to MS ( started with muscle weakness, nerve entrapment, in cervical region, then nerve entrapment in lumbar region with hemyparesthesias /hemiparesis this was in  a period of months, then 7 months later after the onset, more nerve entrapment symptoms with nerve reflexes severely affected plus headaches, plus sudden abdominal muscle spasms, plus days that he feels dizzy at moments, severe frontal headaches with the feeling of throwing up, and now his throat feels funny, feeling as if it was swollen, hard to swallow, ). Only treatment he has received since he started with this was PT and vitamins supplement. 

      At this point he is actually just wondering if this could be coming from his head, but the signals of a demyelinating  process is clear, we just don't know the cause of this. 

      His doctors have been trying to relate all of his neuropathy to a trauma he had while playing hockey, but if that was the case, how's possible he shows no signs of lesion on MRI, except for cervical bull discs. 

      So my question is , what other tests can be done? is there something we are missing or the MRI test might not be as accurate depending on the type or something? 

      And most important overall, WHAT CAN BE DONE TO AT LEAST IMPROVE HIS QUALITY OF LIFE, to at least relieve him from some of the pain. No answers means no treatment course to follow. We don't know if this will get worse( but it looks like it) and he is terrified he will become paralytic , I am scared he could have a seizure at one point and at the same time that all the stress added to this situation is definitely messing with his head for sure. We are scared everytime he starts a headache , we try not to think about it but the symptoms come when we less expected.

      So, dear jaime, what is your personal opinion on this matter.. can you relate any of this to what happened to you? Is there a specific place we could reach to to seek for further advise or a better approach? Is there a way he could start a treatment( beside leaving gluten 100% which he is doing already) to alleviate his pain, his symptoms?

      Thank you for listening to our story and any words we would consider them as a constructive feedback.


    • Posted

      Hi there. I have a seizure disorder too, and I'm having crazy symptoms that point to MS. You jumped out at me, how did you distinguish the medication side effects from the seizure disorder from the symptoms for MS? Specifically fatigue, balance, cognitive. I feel like no one will believe me if I take this to my neurologist. How did you approach yours?

    • Posted

      I'm so sorry. I undrstand totally. I have seen three neurologists and no answer.  I  too have all the symptoms and they make me feel mri shgows no leisons, but my brain mri shows some "insignificant" spots.  I fall alot , muscle weakness(muscle tone gone) in pain etc.  the list goes on. There are times i have to hold onto the wall when going up the stairs. I did have a spinal tap and the proyein number is 59 which i was told is high.  i am anemi, vitamin d dficient and b12 deficient. My mind takes longer to think, albumin is off and wbc is down to 3.3  The last neurologist told me that  sometimes there is a small percentage of people that never get a diagnosis.  i find this unacceptable.  I will persist, but like you I have no idea where to go next. I will keep you in my prayers..  I looked back over this and saw all the grammer and spelling errors, please excuuse, but this seems to be a problem  .

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