Questioning my MS diagnosis

Hi everyone

My name is Kate and I was diagnosed with MS February of 2011 when I was 30. I woke up and started getting ready for work and noticed my feet were numb. I didn’t think much of it, just thought I slept funny and they will “come to” soon. Then I went to the bathroom and noticed that my “lady parts” were numb as well. That’s when I started to freak out a bit. But I went on with my day hoping it would pass.

Long story short, after 3 days of this numbness getting worse (the numbness lasted over a month) I went to the Dr. they thought it was a pinched nerve, did an MRI of my spine and found a lesion. MS Story Then they wanted an MRI of my brain because at that point they were thinking MS, so MRI of my brain showed many lesions so that’s when I was Diagnosed with MS.

Since I was DX, the only symptoms i have had is fatigue and some numbness here and there.

I was on Rebif a little over a year and now im on Aubagio and doing great on it. But more and more, listening to other Ms’rs stories, I feel bad because I have had it soooo easy compared to most.

I just feel like I have been Miss Diagnosed! has anyone else felt this way too? I feel bad second guessing my Doctors but this IS MY LIFE I’m dealing with! 🙂

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Comments

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  • Andrea
    6 years ago

    Kate,
    I felt the same way at first. After my diagnosis my symptoms went away and I began my copaxone. After two years being symptom free it got harder and harder for me to justify taking the copaxone, I kept wondering if maybe I was miss diagnosed. I stopped taking the copaxone and a year later I had another attack, exactly four years after my diagnosis. It is hard to accept this disease at first but it’s important to continue treatment because your next attack could be three years from now or next week, it is the nature of MS. Best of luck!

  • Sheri Stanfill
    6 years ago

    Hi Kate,
    I also feel sometimes that I have been mis-diagnosed. I had some pretty odd symptoms when my neurologist diagnosed me with ‘possible MS’! I had been sent to several different types of doctors trying to determine why I gained 63 pounds in less than 3 months (I have always weighed approx 130 – 150 at 5’9 even after having both my children). I now weighed over 200 lbs and was not eating any differently. Dr’s thought it could be anything from a virus, thyroid issue to a fibrous cystic condition on my ovaries. After years of testing and dieting, nothing worked so I was sent to a neurologist. I had also noticed that I was forgetting things that were too important to forget (like picking up my child from school), incontinence, and spasms in my toes. I had the spinal tap and MRI and the results of the spinal tap were ‘false/positive’ but their were 3 lesions on my brain from the MRI test. I have been on daily injections of Copaxone ever since. I have been told that I could have a benign form of MS (meaning I had the one exacerbation and then may never again get one). I rarely have symptoms now or at least I do not contribute them to MS but more old age. I see my neurologist once a year and each time voice my concern as to whether I really have MS or not and she always tells me that I am one of her ‘good’ symptomed patient’s. Suggesting I enjoy it as long as I can.

  • Lisa Emrich moderator
    6 years ago

    Sheri,
    Sometimes it is easy to question the MS dx when things are going well. One thing which is very nice is that several of the MS drugs, including Copaxone, are approved for use in patients who do have “clinically isolated syndrome”, meaning they’ve had one attack and lesions which look like MS lesions. It’s great that you are doing so well!!
    Lisa

  • Josh
    6 years ago

    Kate,
    Please remember that MS is, by its very nature, SEVERELY sporadic. There are days in which I can walk, play with my kid, even lift things. Then, there are days in which it is a trial to walk across the room. The main test that usually is definitive is a sampling of your spinal fluid. It is painful, but it is the most reliable. I did not need one on account of Lhermite’s Sign.
    A former collegue of mine also has MS and has been able to jog, mountain bike, and even go white water rafting. This person has had it longer than you and I put together.But, it is also your perogitive to seek a second opinion.

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