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MS without lesions? Is it possible?

Posted , 39 users are following.

Hayhue
Hayhue

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.

3 likes, 71 replies

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  • bic24773
    bic24773 Hayhue

    Posted

    Hi, not very helpful but I don't know if I have lesions nobody said but I've got diagnosis of ms no spine tap / lumbar puncture either. I had brain inflammation and was referred By orthopaedic consultant though I had suspected ms. Saw a new neuro after quite a few years past August and they've 'lost' my medical notes. Good luck

  • wendy80842
    wendy80842 Hayhue

    Posted

    Hi, unfortunately(?!) It's quite possible to have tiny lesions that can't be seen on MRI. It's also the case that, if a lumbar puncture is done when someone with MS that's inactive at the time of the LP, the sample taken can show a negative for MS. I realise that these facts can be way beyond frustrating, but they can be a reason why people with MS can go undiagnosed for a very long time. It's still a very worthwhile test, as it's generally necessary to be accurately diagnosed.

    • Hayhue
      Hayhue wendy80842

      Posted

      Thank you. I just had a CT/MRI of brain 4 months ago and now she's requesting another to make sure there isn't a brain tumor - quite scary news. If that comes back ok, I'm having the spinal tap.

      I just had full spine MRI 2 weeks ago and there are no lesions. She was thinking stenosis as my left leg feels considerably heavy when picked up which makes it hard to walk and stay balanced. It also stiffens as I walk. Along with blurred vision in left eye and the vertigo/dizziness.

      I appreciate your advice and will remember it.

  • bic24773
    bic24773 Hayhue

    Posted

    Hi, I know two people with a brain tumour, one presenting with ms symptoms both benign. Remember that you can have benign tumours and you can either live with them ir have Lazer treatment depending where the tumour is, its not always cancer l. Sending you positive thoughts and healing
  • tresha62856
    tresha62856 Hayhue

    Posted

    Hi Hayhue.... I am going through the same thing. It seems that all my symptoms point to MS but the tests say no. Of course, I pray that it isnt.... I requested a lumbar puncture from my neurologist. He seems to think it isn't time for that yet... although all other tests have been normal... MRIs, CT Scan, blood tests, EEG, etc.... im tired, scared and frustrated. I realize your post was 6mos ago. Have you gotten any answers?

    • Hayhue
      Hayhue tresha62856

      Posted

      I wish I could say that I have but I have not sad

      My neurologist changed her mind about the spinal tap and tried me going to physical therapy for my balance instead. Last time I was there, she looked me in the eyes and said, "I don't know what to tell you" so I'm assuming she's given up.

      Very frustrating. I am seeing a rheumatologist in 2 weeks at my own request and am praying for some insight. I am at my wits end as it's going on 2 years now and I have no answers.

      I know you as well as I just want relief. Thank God for the site or I would've went loco by now.

    • jenMSmaybe
      jenMSmaybe Hayhue

      Posted

      I too have been going thru the motions. At first dia was Pseudotumor Bc major headaches & swollen optic nerve (since has healed) i had spinal taps every 6 months for 3 years. Mri on brain yearly & still at it.

      I noticed my headaches,speech, vision, then came right side tremors arm, then left & now into entire body. I have the seizures of staring into space (New) & my memory sucks. I had to stop teaching bc it was so bad, its more of a word memory, then memory loss, basic words too. My balance is off buti take at least 1 water class, kinda like yoga, and it keeps me in shape mostly. However, today my urologist told me today, my nerves arent stimulating my bladder. Im going to do another 6 months of physical therapy & he is going to get with my neuro.

      Last mri--no lesions. Expecting another one soon. My uro asked about mri on spine--that hasnt been done yet. i refuse spinal taps. Keep us updated. This post has really helped me out.

    • wendy80842
      wendy80842 jenMSmaybe

      Posted

      Hi Jen, I've had various MRI's, ultimately I was diagnosed with MS. None of my brain MRI's ever had any clear evidence of lesions. The MRI's of my upper spine however, eventually showed a whole series of lesions, coiling round the top third of my spinal cord. I also had a lumbar puncture done, which also gave a positive result.

      Since I was last MRI'do, I've had both optic neuritis and further progression of various symptoms.

    • Hayhue
      Hayhue jenMSmaybe

      Posted

      Hi Jen,

      I think maybe you should seek another opinion or find a clinic that specializes in MS.

      I've heard from many people who were diagnosed without lesions.

    • JohnWar87
      JohnWar87 tresha62856

      Posted

      I'm going through the identical situation. My first episode was March 28th and at one point thought I was ok again.

      All test show nothing.

      I hope you're doing better!

    • mary69941
      mary69941 Hayhue

      Posted

      thank you for your input. Its so tiring. All these doctors and no two on the same page. My vision is changing and Iam still off balance amoung other symptoms.  They tell me the same stuff also. Having spent almost $6000 last year on copays and deutibles has ben crazy. I am so tired of being in debt.
    • rachelz
      rachelz tresha62856

      Posted

      My boyfriend has gone for a year with all

      The symptoma but has you same problem! All MRI from spin and brain don’t show any lesions. EMG normal. But still he has been having more symptoms. The only thing is that he basically does not present any problems on his balance, cognitive abilities or vision. All his symptoma are reduced to the sensitivity affected and the tingling sensations, muscle spasms and pain. In different parta of his body

    • jenMSmaybe
      jenMSmaybe Hayhue

      Posted

      Ive seen 3 different neuros, ive basically came to the conclusion, i have "episodes" without diagnosis. I stopped doing spinal taps, which was happening every 6 months. I came off all my meds, hide from the sun, try not to get stressed (HUGE), stay active, and take vitamins. Im doing better, but my did tremors got worse, i take meds for that only.

      When i have an episode, as i call it, im down for the count for a few days. My memory is as bad as ever, i double check im dressed b4 i walk out the door bc its that bad. Im tired of fighting for a diagnoses bc my dr said, im only here to treat symptoms..diagnosis dsnt matter. She is my 4th & insurance wont let me change again.

    • Bradford1979
      Bradford1979 rachelz

      Posted

      My situation has been identical to your boyfriend. Clear MRI of brain and spine but daily symptoms. Balance, vision and cog have never been a problem though. SOMETHING is going on, Docs just can't tell me what. I see you posted 4 years ago...has he gotten any answers?

  • tina28767
    tina28767 Hayhue

    Posted

    I too have all symptoms of MS but no diagnosis. Had mri no lesions so it's been written off as fibromyalgia..I don't think it's FM. Have joint pain not muscle or tissue pain. Have spinal issues with arthritis but tested for rheumatoid arthritus & that's negative too. I'm at a loss & I feel crazy. Every year is worse than the last. I never feel good & when I do I burn it at both ends getting stuff done. I feel so alone &

    I just want an answer.no one knows what I have. Been 6 years now. Dizzy pain so tired joint pain numbness all over that radiates. Heart races at times. Nausea at times & just feel flush. Sounds & smells bug me.

    • jenMSmaybe
      jenMSmaybe tina28767

      Posted

      My smeller comes & goes. Light is evil to me. I avoid tv bc of it...flashing lite especially

      Basically, all my senses are messed up. Ive had to alter my lifestyle to help. Took a much less paying job bc less stress, tinted all my windows and windshield on my car. I have 5+ pairs of sunglasses- has to be the polarized! I lose them, so i keep spares, $10 each target.

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