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Can0814 Can0814

Has Anyone been diagnosed with MS, with negative MRI but positive LP?

Hello! I have had Symptoms of MS for the past year. It started suddenly with extreme weakness/numbness of right leg. I was very off balance and could barely walk for a few weeks. I finally sought medical advice thinking I had injured my knee or had compressed a nerve. This led me down a long road until I eventually landed in neurology 6 months after my symptoms started. The initial symptoms improved so I only have a slight limp now, however new ones have come up. Numb patches on head, pain above ear, weak right hand/arm, muscle twitching, dizzy. My right leg is still the biggest issue. Lots of tests ran. MRI several months ago was normal other than some disc protrusions in thoracic and cervical spine. Negative blood labs for Lyme, lupus etc. Neuro is still leaning towards MS despite MRI. I'm currently awaiting results from LP to help confirm diagnosis. (Spinal headaches are not fun!!!) Does anyone have a similar experience?

13 Replies

  • gmatt13b gmatt13b Can0814


    I had the spinal headaches and it was not fun, ended up getting a blood patch done to stop leak. After several test that were normal I was diagnosed with Tolosa Hunt syndrome. Your case doesnt seem to fit my symptoms. My symtpoms include double vision, pain around left side kf eye and numbness. I hope you figure it out, it is just a relief to know. I will be praying.

    • Can0814 Can0814 gmatt13b

      Thank you, prayers to you as well! I went to ER for blood patch today but they couldn't find an adequate vein to draw blood from so I was sent home with strict orders of bed rest for 3 days in hopes the leak will close on its own... I guess my "good veins" were still to bruised from the IV and blood draws the day of the LP.

    • gmatt13b gmatt13b Can0814

      Well thats crap...i laid around for two days and then i got ringing in my ears. Try to see if there is an anestiliogist when u go in. They are the experts at it. Do not let an ER doc do it!! Demand it!! There has to be another vein they can use!!

  • sabrina 89576 sabrina 89576 Can0814

    I have had the opposite of what you are going through a positive MRI and a negative LP. I wish I could be more helpful. As I just had my LP last Friday and had 4 vials drawn. They have also checked me for meningitis, Gilliam Beret's, lupus and more ... I hope you get answers soon. I have found going gluten free and adding a root called asawanga excuse any spelling errors have helped me more than anything so far.

    • Can0814 Can0814 sabrina 89576

      So have you received an official diagnosis yet? I have found staying active (even when I don't feel like it) and a healthy diet/regular sleep help. If you don't mind me asking what symptoms do you have? I'm a 37 yo female. Perfectly healthy before last year. It's so frustrating. Do your symptoms happen to get worse just before your menstrual cycle?

    • sabrina 89576 sabrina 89576 Can0814

      I no longer have a cycle so that I can not answer. But no diagnosis yet. I have been suffering from a weird onset of tonic colonic seizure activity, leg pain that shoots down my left leg, pain in my right arm. I have had issues with my heart now, lungs during certain times of heat exposure, numbness and tingling kinda like fire ants biteing my feet and hands and my legs and arms, issues with random parts of my body like my body is being attacked piece by piece. Each time the symptoms get worse. I have been trying to get a diagnosis of what in the world is wrong with me for about 5 years , I feel like a guienie pig . I truly hope you get answers because the longer you go with out them the worse it can get early diagnosis is your best thing. My symptoms also include extreme hot flashes. My Blessings to you and my heart. I wish this on no one ever.

    • sabrina 89576 sabrina 89576

      Also before my first symptoms started I was perfectly healthy as well. It is a nightmare ! I am now 38 years old and for years I had Doctors who ignored my symptoms. I finally got a team that worked together. Once I got my team a ton of things have been ruled . I am glad that your Doctor listened and got on the ball.

    • Can0814 Can0814 sabrina 89576

      I'm so sorry to hear all you've been through! It's so frustrating! There has to be an explanation! I am lucky to have a neurologist who is taking me seriously. He also specializes in endocrinology so knows a lot about hormones etc. I can't wait for LP results. Honestly any diagnosis would be better than the limo land I've been living in. Good luck to you! Thanks for your responses!

    • sabrina 89576 sabrina 89576 Can0814

      Yes limbo definitely is not fun. Thank You and Best of Luck to you let us know how you are doing! I will try to do the same. I have been told that I might be a zebra ..If your curious about it , it basically means multiple conditions rolled into one person it is very rare to have the zebra diagnosis. But my doctor is leaning towards it.

    • SusanAUSA SusanAUSA sabrina 89576

      Hi, I am Diagnosed 2 yrs now MS RRM. It took 20 yrs. Yes negative on the LP. But I had 10 yrs of pet,ct,and mri scans for my neurologist to look back at, 1. Make sure that you are seeing a neurologist that has experience and training with MS patients if not find one that has. 2. Keep a journal of all your symptoms, important to include time of day, your activities at the time of symptoms, the temperature this will give your neurologist a better picture of what is triggering your symptoms. This journal should have the date on each page in the USA it can be used to help you with ssdi should you become unable to work. 3. Never ever give up or feel like your crazy your not. A good neurologist will test you for all kinds of neurological disorders, this is the ruling out process. Also many people with MS have eye problems that they ignore, stabbing pains, flashing lights and so much more, good eye Dr's can sometimes suspect MS. I hope this helps. Also get in touch with your National MS organization they can sometimes point you in the right direction.

  • tonya99306 tonya99306 Can0814

    Hi, my name is Tonya. I'm 46. Mother of 3 adult daughter's. 1 grandson. Texting is harder 4 me. Is there anyone that can call me me. 704-674-7771. U can block me after. I have questions. I have 7 specialty doctors. Still getting no answers

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