What symptoms first got you checked for MS?

babybanks23
babybanks23 Posts: 6 Member
edited December 18 in Social Groups
WHi, I am early 30's. I have the possibility of MS but no diagnosis yet. It would explain a lot, but I'd probably still prefer a clean bill of health. The neurologist just might say, yep, your memory lapses, the desire to sit/ lie down /sleep 90% of the day, arm tingling & burning, foot jerking when stretching, the inability to control your body temperature very well, and oh yes, that right eye going fuzzy when you had an anxiety attack thinking you had early Alzheimer's is all just a figment of your imagination. I really don't know what to expect! Does this sound like MS or just low vitamin D? What were your first symptoms? What is the process for diagnosis? How much does diagnosis and treatment cost? Do you become "uninsurable?" Trying not to stress but it would be helpful to know what might happen...

Replies

  • wilprosper
    wilprosper Posts: 11 Member
    MRI of the brain and c-spine is how I got my diagnosis in 2003. Was tired all the time, kept dropping things and my legs were heavy and stiff. My friend, don't jump ahead of yourself. It could be anything could be nothing. Just pray and get the testing done and see what happens. :smile:
  • AshleyRKnutson
    AshleyRKnutson Posts: 98 Member
    The thing that got my testing going was optic neuritis. I lost complete and total vision in my right eye accompanied by a horrible constant headache. I've had symptoms before but I always explained them away and they always went away. Bc of the optic neuritis, I was sent for a brain MRI and then put into the hospital on an IV steroid and more testing was done while I was in there. Conformation came shortly after being released.
  • c3js80
    c3js80 Posts: 82 Member
    "Tingling" of left foot that gradually moved up my whole left side. Checked for stroke. MS confirmed with MRI and spinal tap. This was in 1992 when I was 35 years old.
  • Francesca3162
    Francesca3162 Posts: 520 Member
    Optic neuritis, had MRI and was lit up like a Christmas tree.... Then they ran a bunch of other tests and took family history etc... Led them to MS diagnosis!!!
  • KerrieB40
    KerrieB40 Posts: 13
    Horrible headaches that happened in the middle of the night...usually around 2am. I had an MRI then and found out that my brain has polka dots everywhere. After about 14 months and 6 additional MRIs, finally they saw a change in the MRI that they could conclusively diagnose me with MS.
  • I had optic neuritis in both eyes. This was 30 years ago, so MRIs were either new or nonexistent, so had a spinal tap for diagnosis. This was confirmed about eight years ago with my first MRI.
  • lorib75
    lorib75 Posts: 490 Member
    Sudden onset of left sided paralysis. BUT prior to that, in '98 I had Bell's Palsy on one side of my face. I had it again in '01 and at that time I got an MRI but wasn't diagnosed. Had another attack of Bell's Palsy in '03, still no diagnosis.
    When the paralysis happened I was sent to the ER and my BP was through the roof. They did a CT scan and it was negative, the next day I went in for an MRI and half way into it, they brought me out and sent me back to the ER. They assumed I had a stroke... probably because of all of the lesions. I was sent by Ambulance to a large hospital in Kansas City. They did a spinal tap ( which was mislabeled so unusable) and a Transesphageal Echo (TEE) which was inconclusive. Not until the neuro came to talk to me and I told her about the Bell's Palsy, did she take another look at my MRI and then I was diagnosed. It was such a battle. Good luck to you! This isn't something you want to go into quickly I guess. Hope they find out something for you!
  • AshleyRKnutson
    AshleyRKnutson Posts: 98 Member
    Did any of you get tested for NMO (Neuromyelitis Optica)? They symptoms often mimic MS but the treatments are very different (from what my drs told me). Just curious if I was the only one that was tested for that before getting the "official" MS diagnosis.

    Here's a link for those who don't know what it is.

    http://www.myelitis.org/nmo.htm
  • Jazzyjules71
    Jazzyjules71 Posts: 150 Member
    I had sudden paralysis of my left hand that lead to evaluation, but in retrospect was also having left leg weakness (thought it was from an old accident), and balance problems. I had an MRI which showed 2 lesions, and a spinal tap to confirm it. ANd like others, I had previous symptoms that subsided but I never connected the dots.

    No, it doesn't make you uninsurable......but it does make you have a pre-existing condition. For medical insurance, I've found small group policies and single policies have a "doesn't cover pre-existing condition" clause sometimes. Generally insurance for bigger coorporations cover pre-existing conditions. so it depends. Health insurance is more lenient than disability and long term care insurance I've found. I have turned down jobs because they don't cover pre-existing conditions on disability AT ALL, and my current company covered it after a year's waiting period and not needing it (I took the chance, didn't have a relapse, and am now covered). Long term care insurance is even MORE difficult to get. one representative at my health care benefits fair said, "oh yeah, most everything is covered unless you have something terrible, like MS." yeah, thanks bucko-- bye bye! He about fell over when I said that was me. I have since been able to get LT care insurance through my company because they offered a big "one time only, pre-existing condition" waiver.
  • moor9559
    moor9559 Posts: 22 Member
    I went numb starting in my heels and spreading up my legs and torso to my armpits, including my pinky, ring and some of my middle finger all within about a week. I was referred to a neurologist and had an MRI of my back and neck along with a lumbar puncture and a round of blood tests. Results came in had to have more blood tests and a chest x-ray to rule out other auto-immune diseases and was diagnosed about a month after the first symptoms (March 2012). I already had insurance so I haven't had any issues there.

    I hope you get an answer soon - I found the not knowing to be the hardest part!
  • Hootsmamma
    Hootsmamma Posts: 254 Member
    I lost the eye-sight in my right eye on my 37th birthday (later confirmed optic neuritus) I had been running in to the walls at work (when trying to go out the door) and even started just plain falling off my horse from time to time doing such routine things as moving to adjust my seat in the saddle. Legs just started to no longer to obey me. It has been a long road, but it is do-able. Never give up trying. Yoiu have to be your own advocate and find what does and does not work for you and your body. MS is never the same for anyone. It keeps you "on your toes"--so to speak. I too already had really good insurance (thank-goodness)--so it has never been an issue.

    Good luck!
  • DsAdvocate
    DsAdvocate Posts: 93 Member
    I went completely blind. Twice. After the 2nd time I went in for an MRI and was diagnosed.
  • Way_2_a_Healthy_Mel
    Way_2_a_Healthy_Mel Posts: 175 Member
    "Tingling" of left foot that gradually moved up my whole left side. Checked for stroke. MS confirmed with MRI and spinal tap. This was in 1992 when I was 35 years old.

    This is EXACTLY what is going on with me....I have an MRI scheduled on 5/10, and then back at the doc on 5/14. I wasn't even thinking MS, I was thinking pinched nerve, but the doc looked in my eyes, then ordered an MRI. I ended up in the ER last night, and they ordered a head CT, and it confirmed no stroke or brain bleed, but doc said to still keep MRI appointment, and started me on Prednisone, "just in case". I have been reading, and there are more symptoms I exhibit, like memory issues, dizziness, and a few more. I am still not wanting it to turn out to be MS, but I would like to find out what it is. It's just such a complicated illness, and so many varying symptoms, but the symptoms can also point to many other illnesses, so I am hoping and praying it is something completely different.
  • I was at work and my right foot and hand got tingly and numb,I hadnt slept well the night b4 so thought I was just too tired. Went home later and took a nap when I woke up my entire right side was numb. Went to the hospital where they tried to do a spinal tap and failed so they did an MRI and admitted me. The next day they did a spinal tap and said it was clean,MRI showed one lesion so they said I had ADEM which is like MS but only occurs once. I was in the hospital for five days getting IV steroids and physical therapy. My neurologist had another MRi done a week or two later because the right side of my face went numb. Then he said I had MS.Ive since then had little lesions show up but have not noticed relapses.
  • Bbwnomore2
    Bbwnomore2 Posts: 225 Member
    I became totally numb on my right side from head to toe. I was without insurance then and went on medicade. Went 6 years without working. Have been gainfully employed 8 years and took out the insuance option, so now I have it. Went years without anything. thank goodness I got in touch with some wonderful programs at hospitals in the state of ohio, Cleveland clinic being one. They tend to rule out all other possibilties before they diagnose with MS. My diagnosis came after I had a lumbar puncture. the dr went right for that because my mom also had MS at that time. i am 42 now and have had MS for 20 years. Best of luck to you
  • 23tjbk
    23tjbk Posts: 14 Member
    I woke up with tingling in my right foot and lower leg, thought I just slept on it "wrong". By that evening I was paralized from my waist down on the right side. Xrays, CT, MRI, blood tests all came back clean. Spinal tap showed 2 O bands but doc brushed it off but put me on iv prednisone "in case". I was sent to an inpatient rehab center for intense physical and occupational therapy. During the months following my release I had additional MRIs done at a facility with a stronger magnet (??) which showed an indeterminate brain lesion, spinal MRI showed inconclusive results. During a later appointment with my neuro I was told he also noticed weakness in my right arm. I was told it "might be MS" but I didn't currently meet the clinical criteria for a diagnosis. I have been put on Gabapentin and Baclofen to help with the muscle spasms and spasticity, and am just playing the waiting game to see what if anything happens next.
  • rachelroma
    rachelroma Posts: 22 Member
    Double vision was the symptom that finally got my attention. Even then, I waited almost 3 months before going to the eye doctor who sent me to the ER. Funny how easy it is to ignore our health until thing really come to a crisis.
  • shunggie
    shunggie Posts: 1,036 Member
    Tingling and numbness in my feet, I had bought a pair of tennis shoes on sale that were a little small (they were on sale) but still fit and I had walked around all day. I assumed the a little too small were way to small and assumed that's what the issue was. Unfortunately, it didn't get better the next day it got worse and creeped up my body. MRI was conculusive as far as my neurologist was concerned but the insurance company wanted a spinal tap before they would ok MS meds. Since then I've had a few incidents the worse being optic neuritis. I thought I had scratched my eye taking out or putting in my contacts. OOPS!
  • Slurred speech and terrible gag reflex...It was a Sunday and my sister and brother in law were over for dinner. We opened a bottle of wine and after two sips, I began to slur when speaking. We kidded that I was the world's biggest lightweight! When the slurring continued the next morning, I went to see my doctor. She immediately sent me to an Otolaryngologist and neurologist. After 5 months and many, many tests, I was diagnosed with M.S.
  • Hope228
    Hope228 Posts: 341 Member
    In 2006 I started to become a bit more of a klutz. At first I didn't think much about it, but then it got to the point there my co-workers
    were all talking. I also started to lose vision and experience fatigue.
  • sed1217
    sed1217 Posts: 228 Member
    A PT found something called a clonus response in one of my feet. Basically, if you hit the bottom of my right foot, it "bounces," goes slightly spastic for a minute. I had a few symptoms before then that I never associated with MS (limped for short periods of time over the years and thought I'd hurt my back, especially since it went away within a week). I actually argued with my neuro when he diagnosed me because I was so sure there'd been a mistake. But then he showed me the MRI and made me a believer, haha!
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