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    Diagnosed yesterday

    Hi all, my name is Anne. I am 27 years old and was just given the RRMS diagnosis yesterday.

    My neurologist said that my MS symptoms were very atypical but my MRI was definitely consistent for MS lesions. My first symptom was left sided trigeminal neuralgia in December 2012. In September of this year, I had blurred vision and the feeling of being "spaced out". I saw both a neurologist and an ophthalmologist who did not feel it was optic neuritis. An MRI was recommended to rule out MS but the neurologist was not concerned for MS and the symptoms went away in about a month. I also had a completely normal neurological exam so I did not pursue the MRI. In November 2013 I had a cold and a few weeks later had a flare up of right sided bells palsy. The left sided trigeminal neuralgia and right sided bells palsy threw up a red flag to my PCP and recommended I have the MRI and follow up with the neurologist. Well, here I am today and the neurologist was just as surprised with the MRI findings as I was.

    My neurologist is recommending an MRI of my spine to see if there any any lesions. We decided against a lumbar tap at this time since it would just confirm the findings on the MRI. Labs were drawn yesterday to make sure I don't have anything that could be mimicking my symptoms such as Lyme's.

    A question I have for you on here is should I have a second opinion? Did you have a second opinion following your diagnosis of MS? Did you have the lumbar tap and is there any other benefit to having it other than to just confirm the MS diagnosis?

    Also, due to the severity of my lesions my neurologist is recommending that I start Vitamin D asap as well as research the medications available with a goal of starting one next month. The medications he has recommended include Copaxone, Avonex, Rebif, Betaseron, Gilenya, or Tecfidera. There are a few medications I turned down right away such as the infusion drug. What medication are you taking or have you tried? Did you have any serious side effects? I am not worried about having to give myself injections so that is not an issue. I am looking for a medication with the least amount of side effects (not too worried about side effects related to injection site irritation). My doctor said that Copaxone will have the least amount of side effects and if he were in my shoes, that is the one he would choose to take.

    Thank you in advance for your time and feedback!!!

    #2
    Hi Anne,

    It is good to meet you but of course not under the circumstances....I was just diagnosed in November of this year.

    Regarding your question about a second opinion...yes, I absolutely got a second opinion and it wasn't from a general neurologist but an MS specialist. I had MRIs on brain and spine and only had two lesions so my original neuro ordered a lumbar puncture. The LP indeed showed OCBs, which the specialist said confirmed it in light of my symptoms and MRIs.

    I decided to start Tecfidera, but I've only have been taking it for two days. I decided that because it is a pill twice a day and the efficacy appears to be quite good at delaying progression. The needles for the other drugs would have been fine (I've had to inject myself for other reasons about 10 years ago for a couple of weeks). Howevr, I travel quite a bit for work and airplane security and needles can be a problem...and given I've made the choice not to tell my employer at this point about my dx it would be hard to explain to coworkers traveling with me.

    I haven't had any stomach problems thus far, just some flushing that is kind of like a hot flash. I took a baby aspirin when I noticed today's flushing start and it stopped it right away. I've actually noticed my anxiety about my dx decrease since I've been taking the drug....but I think it's because now I feel like I'm doing all I can to delay progression .

    I send you cyber prayers and wish you the best as you embark on the new norm for you. I haven't been posting on this site long, but have found it to be a very supportive and informative place for MSers like us.

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      #3
      Hi Anne

      Welcome to MSworld! So sorry about your diagnosis. I am 10.5 months into mine.

      To answer some of your questions, yes I went to a MS specialist for a second opinion, no I did not have a lumbar tap. Like you my lesions were consistent with MS and all blood work ruled everything else out so I didn't see the need.

      I started taking vitamin D supplements and Rebif. I have very little side effects from Rebif and have not had another relapse since the first one at diagnosis. I am happy with it. However, Copaxone isn't available to me since I live overseas with my husband's job or I probably would have tried that one first.

      All the best to you!

      Comment


        #4
        Diagnosed Yesterday

        Hello Anne,

        "99% of American people are deficient in minerals and marked deficiency in any one of the more important minerals actually results in disease". Source: U.S. Senate Document #264.

        You mentioned Bell's Palsy according to the U.S. Senate Document #264 the nutritional deficiency is a Calcium (Calcium, Magnesium, Glucosamine & Chondroitin).

        For MS the nutritional deficiency is Essential Fats & Cholesterol (Omega 3,6,9 & Selenium).

        Comment


          #5
          Hi and welcome!
          I love how sensible and proactive you are right out of the gate, a person after my own heart.

          I was diagnosed with only a MRI of my brain and declined the LP because like you I also had symptoms that were indicative of MS. The following year a brain and spinal MRI were ordered and at that time I didn't have any spinal lesions but plenty of them on my brain. If your neurologist isn't a MS specialist it might be worth getting an appointment with one just to see if they have any other thoughts or advice regarding medication.

          I have been on Copaxone for almost 10 years now and other than the site reactions, lumps/dents in my thighs, I don't have any side effects that I am aware of. Although my MS has progressed in subtle ways I have not had any more flares in all these years since starting the medication.

          Unfortunately we will never know if it was the medicine or just my disease course but unless I take a quick turn into the crapper I'm not taking any chances and will keep taking Copaxone until a much better medication comes along.

          As miserable as this disease can be I am blessed to have been able to finish school and continue working like a savage so I can save for my unpredictable future, yippee, thanks, MS.

          Here's hoping MS is kind to you. Jules
          He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
          Anonymous

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