Announcement

Collapse
No announcement yet.

Got my official diagnosis today

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
    #1

    Got my official diagnosis today

    My neurologist said My symptoms are so by the book... Its 100% Multiple Sclerosis. I have lesions on both my brain and spine.

    Its no shock to me (obviously) But it does kind of make me sad.. We are going to have a spinal tap done. So he can get more info. And from there we will start treatment.

    Im just glad I have an official diagnosis.

    Anyone have any experience stories about the spinal tap? I just know that they are going to be putting me under for it. So I probably shouldn't worry about it too much.
    Tags: None
    #2
    Hi and welcome,
    If you have lesions on your brain and spinal cord suggestive of MS in addition to symptoms you do not need to go through a spinal tap.

    They can be negative even if you have MS and unless you are doubting the diagnosis and need more proof I'd skip this procedure.
    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

    Comment

      #3
      It must be something different because the spinal tap's I've had are not painful at all and all I get is lidocane to deaded the injection point. The bad part is having to lay flat for about 4 to 6 hours before they release me from the hospital. I too was glad to get a DX and know what I am fighting against instead of having so many symptons and thinking I may be crazy! You've come to the right place for the best support group in the world!

      Comment

        #4
        Originally posted by Lexie View Post
        It must be something different because the spinal tap's I've had are not painful at all and all I get is lidocane to deaded the injection point. The bad part is having to lay flat for about 4 to 6 hours before they release me from the hospital. I too was glad to get a DX and know what I am fighting against instead of having so many symptons and thinking I may be crazy! You've come to the right place for the best support group in the world!
        I had the same thing. They did a fleuroscopy guided tap, and I had to lie in bed for four hours. Only problem was, I had pee desperately after hour one - the process of getting up on a bed pan was worse for me than actually getting up and going to the bathroom was! And even though we tried the bed pan like three time, my body was like, "Noooo, I'm not pottying in my bed!." As soon as that four hours was up, I went straight into the bathroom. I did end up getting a spinal headache from all the jostling around, but by the time I put two and two together was on a weekend, and then by Monday the headache was gone.
        Diagnosis: May, 2008
        Avonex, Copaxone, Tysabri starting 8/17/11

        Comment

          #5
          Hugs

          Hi Manda,

          I'm sorry. Even though it may be a relief to get the diagnosis (totally normal!), I'm sorry for the hope that it might be something else that you're grieving.

          I'm also confused why your neuro. would want a spinal tap if he's 100% sure. Just my opinion, but I'd ask if it's necessary and why. I think some docs order it out of habit even though their treatment plan wouldn't change.

          Do you have a neuro. that you trust? Hoping you have someone that listens to you and you feel confident that you can listen/trust in him/her.

          Praying for you tonight, Manda. Hang in there. You're not alone!

          Comment

            #6
            Originally posted by MomtoMiracle View Post
            I'm also confused why your neuro. would want a spinal tap if he's 100% sure. Just my opinion, but I'd ask if it's necessary and why. I think some docs order it out of habit even though their treatment plan wouldn't change.
            The first general neurologist who diagnosed me also wanted a spinal tap but after researching and reading posts here I went to see a MS specialist who said it wasn't necessary for diagnosis and unless I needed re-assurance that it was MS I could skip it.

            Being nearly blind and having a brain that looked like swiss cheese pretty much negated the need for me to want a needle inserted into my spinal column. It was what it was.
            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

            Comment

              #7
              Ive had a few neuros and none of them want a spinal tap even tho' my first over ten years ago was neg for ms technically.

              My sxs from then to now are clear according to them and lesions.

              They all say no point putting me thru' it, they do it to protect thier butts tho' a neuro once told me if you use crabs the cost of them is so high if you get mis dx'd the ins' company will sue the dxing doc sometimes if theyve been paying for crabs for no reason.

              Thats what this neuro told me anyway when i asked why they did it if they were sure and why it took so long to dx.

              My tap went very well (no floroscope no numb stuff) but It hurt during as they hit a nerve it was a wierd icky sensation but passed fast. Then after I had a golf ball sized knot that hurt for months when lifting.

              But folks can leak spinal fluid, have migraine for days etc.. it just depends.

              follow your heart, your spinal fluid can be - no signs of o bands and you still have ms so to me why bother unless they want to rule out other diseases.

              Comment

                #8
                Congratulations or Condolences?

                I'm glad you finally have a dx so you can deal wtih facts. I'm sorry that you have MS. I'm know you must have a lot of questions and decisions to make. Best wishes as you weigh your options. Praying you get relief.

                Comment

                  #9
                  Hi Manda - I got my dx on Tuesday. I too have lesions of different ages on both my brain and c-spine. I have symptoms and this is the third incident over the last 20 years. I've seen my PCP and a neuro and neither one has mentioned an LP. I think the Revised McDonald criteria does not require an LP if the MRI and Exam evidence supports the dx. I'm seeing an MS specialist next month and if he doesn't bring it up, I'n not going to
                  At weddings, my Aunts would poke me in the ribs and cackle "You're next!". They stopped when I started doing the same to them at funerals. Dave Barry

                  Comment

                    #10
                    Hi Manda,

                    Welcome and sorry for your diagnosis.

                    I had an LP after positive MS diagnosis so that I could decide if I wanted to start a DMD. They only used a little local anesthetic for the LP and didn't knock me out at all.

                    The LP was my choice to do or not.

                    Is there a reason that your doctor is requiring an LP, and a special reason he is going to knock you out for it ? It seems like overkill to knock you out for the LP.

                    Comment

                      #11
                      I was asked if i wanted a spinal tap but told i didn't need one. said the lesion in my brain and spine both active & inactive was enough to diagnose.

                      from what i have read. the doc's don't want a spinal tap its the patient that don't want a diagnosis as serious as MS to come in with a whimper of an MRI--they want thunder and lightening & drama, before being diagnosed with something as serious as MS...

                      and submitting to an LP seems to satisfy that need in patients..

                      i have read an LP may be needed when there is doubt in the diagnosis--like recently i read a post of a woman who had a cis not consistent with the lesions she had...an LP might be needed in that case. i doesn't sound like that's your situation, more you should use this time to contact the neuro and ask more detail about why he needs this information from the LP and what he will do if the test is positive & what he will do if its negative.

                      If he will do the same for each possible test result, its an unnecessary test.

                      Rocky Mountain MS center on Diagnosing MS. On page 6, last 2 paragraphs it discuss the less and less need for LP in diagnosing MS.

                      30 years ago 100% of patients got an LP, now much less.
                      we reserve spinal fluid for people whose exams ot histories are not typical, who do not fulfill formal criteria or when things don't fit, don't make sense.
                      http://www.mscenter.org/images/stori...MS_article.pdf


                      call the neuro and ask why he needs the information from this test & how his treatment will change with each test result: positive or negative. and go from there.
                      xxxxxxxxxxx

                      Comment

                        #12
                        Hi,
                        I am sorry you have to be here, but we can all support you along your journey.
                        Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
                        ~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~

                        Comment

                        Previous template Next
                        Working...
                        X