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    #16
    Sorry so long to respond.

    How often do I flare?
    Used to be 1 or 2 severe flares per year. When I switched from a general neurologist to an MS Specialist, she said, "If you have flares once a year, we think your medication is only borderline effective. You aren't even borderline."

    She switched me to a different Med. I've been having less than one fkate per year now. And much more minor. None since 2014.
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
    .

    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

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      #17
      Hi Beachbreeze, how are you feeling today? I just caught up with the entire thread. I'm curious. What have they ruled out so far aside from a heart condition?

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        #18
        Thank you everyone for your input and concern. I just got the EEG done today. Seemed fine enough to let me leave, though they say it takes two weeks to process. I had a very twitchy reaction to the strobe lights but she didn't say if that was normal and didn't seem concerned. My blood work came back normal again so I guess that rules out thyroid problems. The only thing that was off was vitamin D, which seems wrong because I live in Florida and am outside daily. He also took a look at my brain MRI imaging from previously and said it looks absolutely normal for someone my age, so I guess that rules out MS. He said nothing about potential vascular issues or it looking like an old brain. I have no idea why I'd have these two conflicting reports though!!! Radiologist says 65 year old's brain, neurologist says perfectly healthy?! They've pretty much ruled everything else out. Curious to see if the nerve test turns anything up. I had some sort of peripheral neuropathy happening but I don't understand why it would disappear completely. Well almost completely....(TMI alert: clitoris area loses feeling intermittently).

        Today I feel unremarkable. I still have some neck weakness and weird head feelings, can't concentrate as well, have a both stronger and lessened reaction to touch depending on area, and am breaking out in rashes, but generally normal. I'm at the point now with all these tests negative where I am questioning myself. Did anything even happen to me this summer? It's surreal. I mean, we work with these cold doctors who don't even feign interest in us and don't care when they provide answers. Follow up in January?? Meanwhile I've got bills to pay and have to wonder what just happened! Lol...sorry I got off track there.

        Pennstater, your story sounds eerily similar to me. Vertigo had never happened to me until all the other things showed up. Im glad you got it figured out, albeit over ten years later!! I'm not sure if I'd come across as nuts if I push for more testing or what, but it seems like it might be beneficial to have a neck MRI? Is that the difference for you or did it just take time for lesions to show?

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          #19
          Beachbreeze --

          Here's the beginning of my story. I posted it in the Creative Center quite awhile back.
          http://msworld.org/creative-center/?...f-in-the-night

          After that, it took almost 2 years for me to get diagnosed. Multiple additional flares, with new and different symptoms. A two-week visit to Mayo Clinic (they couldn't figure it out). And, finally, after 7 MRI's over time, my neuro said, "It looks more like MS now."

          So, yeah. It might just take awhile for things to be clear enough for docs to diagnose.
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
          .

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

          Comment


            #20
            2017 Update

            Hello all. As you know, I lost that second job last year. I got unemployment for a few months and then started nursing school this January. I am also working part time with the elderly and that is fine for me as long as its part time. School is extremely difficult for me. I have a lot of free time but I am mostly using it to recoup my energy, and I haven't even gotten into the hard stuff.

            Symptoms still happening:
            Balance issues
            Dizziness/ lightheadedness
            Lack of concentration
            Times where I have no energy to get up

            After my influx of symptoms I went without my period for 3 or 4 months and then was on it for three straight months. So hormonal issues, I think, are some of it. However, my thyroid test came back normal during testing last year (twice). Without insurance I am now using a community clinic gynecologist and she is running the same old, same old testing. I don't imagine it would turn up any differently than during the height of my symptoms. I have mostly tried to ignore everything since I know it won't be solved simply. In times like now where I am feeling ill I'll come to this site and look online. I have looked at POTS and BPPV and they sound like me but somehow don't tell the whole story. In trying to live life as normally as I can and do what I need to do so that I don't embarrass myself and my boyfriend. But now I'm on the floor exhausted and lightheaded after one load of laundry and folding.

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              #21
              Hi Beachbreeze,

              If you have not had MRIs (brain and spine) then that would be my suggestion. One MRI with only one lesion doesn't indicate MS and does not meet the criteria for MS (Revised McDonald Criteria). Symptoms alone cannot give a diagnosis of MS simply because there is no symptom that is unique to MS.

              I certainly cannot say you do or don't have MS this is up to your Drs. to determine.

              I do know Multiple Sclerosis would not cause what this:
              After my influx of symptoms I went without my period for 3 or 4 months and then was on it for three straight months.
              There can be many reasons for this to happen such as medications, being sick, stress, anxiety, GYN problems, and more.

              You could ask/request a Neuropsych evaluation. This is used in many conditions and might indicate what and why you are spacey and have a lack of concentration.
              http://emedicine.medscape.com/article/317596-overview
              Diagnosed 1984
              “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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                #22
                Hello Snoopy. Thanks for writing again. Yes, I am aware irregular menses is not a symptom of MS. As I've said previously, I am in the testing process but have had a few healthcare lapses. I write here because, right now, it is the most similar symptom-wise to me and I have already posted here. I am not looking for and haven't asked for a diagnosis from anyone here. Thank you.

                Comment


                  #23
                  Originally posted by SNOOPY View Post
                  If you have not had MRIs (brain and spine) then that would be my suggestion. One MRI with only one lesion doesn't indicate MS and does not meet the criteria for MS (Revised McDonald Criteria). Symptoms alone cannot give a diagnosis of MS simply because there is no symptom that is unique to MS.
                  Hi Beachbreeze

                  I agree with this.

                  You have said that you have no insurance, but it still might be possible to have an MRI done.

                  There are websites, such as Healthcare Bluebook, which give the fair market cash price of medical procedures. By entering your zip code, it will show the locations in your area that offer MRI's and then you could call around for the best price.

                  It's possible that there are imaging centers which might even allow payment plans.

                  Some hospitals (which usually cost the most) and also some imaging centers actually charge insurance companies 5X the fair price!

                  As you probably already know, MRI of brain and cervical spine is the most useful tool in determining whether there are lesions consistent with MS.

                  In any case, hopefully you will find the reason for your uncomfortable and worrying symptoms.

                  Take Care
                  PPMS for 26 years (dx 1998)
                  ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                  Comment


                    #24
                    Originally posted by Beachbreeze View Post
                    I am not looking for and haven't asked for a diagnosis from anyone here.
                    I didn't suggest you were. We can only give opinions and suggestions which was my point.

                    Why not respond about more MRIs and/or Neuropsych testing than assuming I was suggesting you were asking or looking for a diagnosis

                    Multiple Sclerosis Association of America (MSAA) Has a MRI access fund:
                    http://mymsaa.org/msaa-help/mri/
                    Diagnosed 1984
                    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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