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.
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
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.
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.
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
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?
I wish I could say that I have but I have not 
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.
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.
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.
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.
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.
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.
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!
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
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.
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
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.
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!
Hope all went well for you!!
Thank you!! Hope your anxiety lessons for you. Stay strong!