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Hello

I’m a 67 yr. old retired nurse who has had MS since a diagnosis in 1994 after many years of doctors guessing at my diagnosis since no lesions showed on my MRI. A really remarkable neuro was like a detective, and said he did not doubt I had MS with my symptoms of trigeminal neuralgia, numbness in my legs and hands, tremors and spasms in my legs and feet. Without his support, I would have been like a dangling participle. I know MS can take years to diagnose without showing directly on an MRI. Has anyone else had this experience?

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Comments

  • Margaret
    3 years ago

    Hi, this is to the nurse w no lesions, I was dx in 2012 at the time I had lesions, the recently did another mri cuz I got a new neurologist due to insurance. And now I have none on this recent mri, and I am so afraid they are going to take me off my meds, and all be a veggie before to long cuz u see I was really bad, and then they got me on copaxane, a mth later, I cud walk, I was happy I cud do things with my grandkids, I still wasn’t a 100% but I cud function, I’ve been a mess for two weeks now. My next appt is until june, I have been calling leaving messages for this new Dr to call me but nothing so far, I don’t know what to do. When I got dx I was happy, cuz now I had a name to what was going on w me, and tho there was no known cure there was treatment avaiable, now I feel like I am back at step one, I can not go back to how bad I was, I just can’t. I don’t know what to think or do esp w the Dr. Not returning my calls.

  • Sandra author
    3 years ago

    I’m sorry for your going thru this experience. Could you get your primary dr to give you a referral, as this one is either too busy with patients or putting you off? I’ve seen Neuros at 4 different places before I found one who took me seriously.

  • linda walters
    3 years ago

    I am recently going thru an outbreak of louder than normal syptoms. MRI showed no changes. Was told maybe it’s not Ms?!? Bull!spasms numb fatigued weakness legs collapsing under me. I am very upset n even forgot what I was responding too!! Sorry! Another symptom of this sickness.

  • Sandra author
    3 years ago

    Sounds like he doesn’t know…maybe a new opinion with a different neuro or just ask him what his plan is for you.

  • Sandra author
    3 years ago

    Maybe a different neuro opinion would help.

  • Margaret
    3 years ago

    Ure not alone if u read my post u’ll understand why. So I know what ure going thru.

  • Sandra author
    3 years ago

    I’m so sorry you’ve had such a poor experience with your 1st neuro. I’ve learned that if the lesions ate in the gray matter of the brain, they aren’t always picked up by MRI’s. I know I’ve had the same symptoms for over 20 yrs. …dizziness, imbalance, cognition issues, and many other symptoms connected with the cerebellum and brainstorm. Do your symptoms worsen with any change in weather?

    Sandra

  • Margaret
    3 years ago

    Yes, I can’t stand the cold. My legs will hurt so bad and I have a hard time functioning, and when I’m in the heat I get really, really shaky light headed and water will just pour off of me.

  • dschulze
    3 years ago

    I was just positively diagnosed with MS on March 9, 2016. I have known for over 9 years that it was a possibility. I lived in Kentucky at the time. I didn’t feel bad 9 years ago. A back MRI showed spots on my spine, and I was sent to a neurologist…had a brain MRI done. The neurologist was so cavalier about it…said he would say I did or didn’t have it and suggested I “go live my life the best I could”, which I did. The past couple of years, I have lost my balance and fallen way more, been dizzy, exhausted, etc. In having back medical records sent to my new orthopedist in Columbus, he asked what I was doing for my MS the past 8.5 years. He was upset I had no further MRI’s in all of that time. He sent me to a wonderful neurologist with further MRI’s. I have not begun medication, yet…waiting on Medicare to approve it. I go to a wonderful MS support group. I will be 69 in August.

  • itasara
    3 years ago

    I am fortunate that my diagnosis was quick and easy. My daughter was almost 20 and at college when she Transverse Myelitis. That cleared up ok but then she had Optic Neuritis and consequently dx’d with MRI. Three Yrs. Later when I was 57 I woke up with numbness from my chest down. I knew right away what it was and was diagnosis with MRI a few weeks later. But I then had a brain scan b/c of my daughter’s hx, and it was MS. But I belong to a number of groups including MyMSTeam.com. I read stories of many and some have been through more than one can imagine before a diagnosis is made.

  • Sandra author
    3 years ago

    I’m sorry to hear about your daughter…always wonder if my two children may have a “bad” penny as my neuro called it yrs. ago. I have a cousin who has primary progressive and is riding motorcycles! Good for her!

  • Loopyone
    3 years ago

    I was very fortunate in that I was diagnosed very quickly. I had all the most common symptoms and my GP saw it right away and sent me to a neuro.

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