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Symptoms, but negative MRI and Dr. suggested spinal tap?

Hello, my husband has had some debilitating symptoms throughout the years, but only recently have I thought to look back at those and relay them to his neuro for his upcoming appointment.

Relieved it wasn't ALS

He had a neuro appointment back in 2011 and it was inconclusive at that point but the Dr. did say he’d like a spinal tap to help with a diagnosis and tentatively suggested MS, when at the time we were actually concerned it could possibly be ALS. My husband was not keen on the thought of a spinal tap, and we were relieved he didn’t get diagnosed with ALS especially because he was having swallowing and tongue issues. So we ran out immediately and signed up for life insurance and never went back to the neuro despite the fact that he still had issues that would wax and wane.

Episodes of vertigo and dizziness

His earliest symptoms of health issues began while working on the flightline in the Air Force. He was sent to the emergency room one day complaining of “feeling weak” and his heart skipping... EKG was normal. A few times in the military, he had short episodes of vertigo or dizziness. He excited the military and some years later ended up with constant vertigo issues that lasted on and off for about 4 years or more... with differences in severity. They at one point said perhaps viral? Fluid in the ears? Eventually being told he had labyrinthitis. He missed a lot of work and it just eventually went away one day.

He needed a cane for months

Started suffering from anxiety and depression around this time. He also got shingles on his face and around his eye at the age of only 35. Some years later he began having swallowing issues, and a problem with excessive saliva. Slurring his speech a bit and he’d complain of his tongue getting tired when eating or even singing in our congregation. At this same time he developed horrible cramps waking him in the night in his calves. Eventually his calf muscles balled up into tight balls and making his walking difficult. His foot actually lifted itself up one day while sitting crossed legged. He mistakenly thought I had pushed it up, but it had moved on its own.... One day while helping our son push a car with a dead battery, they both heard was sounded like a rock hitting the car but my husband felt immediate excruciating pain in his calf...believing he’d perhaps been shot by a BB gun? No, it was his tight calf muscle and it had RIPPED! He needed a cane for months. His legs felt weak and tight even after he healed up but he just dealt with it... some days were better than others... wearing compression socks seemed to help.

PLD and horrible fatigue

His legs would fasciculate and twitch after he’d get home from work. I’d watch in horror, worried it was ALS... he’d get them in his arms as well but not as often. He also began to snore horribly and had a sleep study and they said he had PLMD (Periodic Leg Movement Disorder) sometimes kicking me very hard at night. Snoring and kicking got so bad I wanted to sleep in another room. Snoring is not constant every night... he has periods where it’s much better. He can have days he is very fatigued and gets breathless just making a cup of coffee?! I would have sent him to a heart doctor, but the heavy breathing comes and goes!? If it were a true heart issue (blocked artery etc), he surely wouldn’t have good days and bad days with his breathing or getting quickly winded? He has horrible fatigue. He’s gone from being able to walk 5-6 miles each day for work, to only a 1/2 mile before his legs are hurting too much and muscles are too tired. He’s had MRI and EMG in the past... ruled out ALS but the neuro suggested MS... Although I’m not certain why they would still suggest MS if the MRI didn’t show anything and he wanted a spinal tap for extra info?

Reaching out to the REAL experts for MRI advice

I understand that Dr.’s are highly educated for years, but those WITH the disease are the REAL experts in my opinion because you all live with this disease every day. Did anyone here ever have clean MRI’s but still suspected of having MS? I believe the MRI was only of his head... should it have been of spine as well? The MRI was done in 2010 and not sure it had contrast? Thank you to anyone who takes the time to answer any questions or who may have thoughts on these symptoms...

  1. Hello MSdx,

    When I was going through the initial diagnosis process the final test was a spinal tap. The MRI's of the brain were normal at that time. They had ruled out ALS, rheumatoid arthritis, lupus, HIV and Lyme disease. After doing c-spine MRIs, with contrast they found lesions. And the spinal fluid had the protein that made them decide it was MS.

    It is not something anyone wants to have done, but unfortunately it does end up being the thing that confirms a diagnosis.

    Best of luck!


    1. Hey MSdx,

      My diagnosis was more conclusive. My first neuro - who was great and since retired - asked me to do the spinal tap pretty quickly. He explained that it can a very definitive test. If your spinal fluids come back negative, you may still have MS, but if they come back positive, you 100% have MS. I hope you guys get an answer soon.

      Good luck, Lisa

      1. Lisa

        Thank you so very much for the info. A friend had told us that her husband needed a spinal tap to confirm Guillain-Barré, so I wasn’t certain a spinal tap would show anything that definitive for MS. I’m not sure what they look for in the spinal fluid for Guillain-Barré as compared to MS?

        I really feel horrible for not doing more research and convincing my husband to get the spinal tap back in 2011.....the past 9 years I’ve struggled with severe issues with my own health, and his health just got put on the back burner. I hope the delay in diagnosis, ( if he finally does get the MS diagnosis) didn’t actually cause more issues since he could have been on medications all this time to help....Ugh!

        Again, thanks so much for your comment and the valuable information.I hope you are well.


        1. Kim,

          Thank you for taking time to address my questions with your own experience. It helps a-lot! I am rather dismayed that an MRI wouldn’t be the biggest smoking gun, but it sounds like a more specialized MRI on the spine was definitely more helpful, but the inal tap is still needed to be certain.

          I think that my husband feels he really does need to agree to the spinal tap. It’s difficult suffering so many years and not having a proper diagnosis.

          I hope you are well, and again thanks so much for the information.


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