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    New, not yet diagnosed

    I hope someone reads this and responds although it might be lengthy. About 20 yrs ago I started having problems with fatigue then I started having a sort of generalized pain and my family dr diagnosed me with fibromyalgia, at that time I thought that seemed like the right dx but as years have gone past (it's been approx 12 yrs) I have been wondering if that dx was correct because the pain isn't too bad it's more the fatigue that gets to me.

    Then about a month ago my tongue and lips went numb and I have very diminished taste. My dr took me off of my medication thinking I was having a reaction to it, that didn't help so he gave me some swish and swallow med thinking it might be fungal, that didn't help, I thought maybe it was an issue with my teeth or gums so I went to the dentist and I have gingivitis but he said no way would that cause my symptoms so I went back to the dr and he put a request in to my insurance for a brain scan to see if I have ms.

    Some of the other symptoms I have are tingling in hands and feet, the numbness in tongue and lips, fatigue, an all over sort of pain, dizziness, vertigo, cramps in legs, confusion, headaches. I'm wondering from some of you that have been diagnosed with ms are these some of the symptoms that you have ?

    Is the brain scan the most accurate way to dx ms ? I'm tired of feeling like it's a big guessing game, which I know drs don't know everything but it just has been hard not really knowing for 20 yrs and no medicine I have taken has helped : (

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    Hi macaquemom2,

    Welcome to MSWorld! But, sorry to hear about your symptoms. I hope you do not have MS.

    Your symptoms very well could mean MS, but they could mean lots of other things, too. (And you could also have fibromyalgia and another condition.)

    A MRI is used to determine if you have any lesions (scar tissue ) in your brain. They form as a result of demyelination in MS, but could be there for other reasons as well. There is no one "test" that determines whether or not you have MS, but a MRI is a good place to start. A diagnosis of MS is only given after everything else is ruled out.

    Good luck with your MRI. Please let us know how that goes.
    Kimba

    “When you change the way you look at things, the things you look at change.” ― Max Planck

    Comment


      #3
      Thank you for your reply. You said a diagnosis is only given after everything else is ruled out, I'm curious what else has symptoms like this ? My Dr hasn't been on top of things lately and I'm always having to do research and ask him could it be.... ? So I'm at a loss myself on what other things to test for.

      Comment


        #4
        Hello macaquemom2 and welcome to MSWorld.

        Originally posted by macaquemom2 View Post
        You said a diagnosis is only given after everything else is ruled out, I'm curious what else has symptoms like this ?
        There are numerous other reasons for Neurological symptoms: other conditions/diseases, vitamin/mineral deficiencies, some medications and mental health issues.

        This link will provide you with some information about possible other reasons for symptoms:
        http://www.nationalmssociety.org/Sym...ns-to-Rule-Out
        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

        Comment


          #5
          Thank you for the reply, I will look into this, they did a blood test for vitamin deficiency and it was fine and they took me off my medicine and that didn't help either so I guess my Dr is on the right track, I have my MRI Thursday so I hope this gives me answers.

          Comment


            #6
            MRI results

            I had an MRI and the dr sent me an email and said it was probable ms so I have an appt February 18 with a neurologist.

            Comment


              #7
              Originally posted by macaquemom2 View Post
              I had an MRI and the dr sent me an email and said it was probable ms so I have an appt February 18 with a neurologist.
              I am sorry

              Please let us know how your appointment on the 18th goes and please feel free to keep posting and asking questions.
              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

              Comment


                #8
                Symptoms

                It seems like I am getting new symptoms almost weekly, like last week my left arm got very weak to the point I had trouble lifting my soda can, then 2 days ago I got a numb spot beside my left kneecap, does this sound normal ? My appt is the 18th but it seems so hard to wait until then when this is happening.

                Comment


                  #9
                  having an issue similar to yours

                  Originally posted by macaquemom2 View Post
                  I hope someone reads this and responds although it might be lengthy. About 20 yrs ago I started having problems with fatigue then I started having a sort of generalized pain and my family dr diagnosed me with fibromyalgia, at that time I thought that seemed like the right dx but as years have gone past (it's been approx 12 yrs) I have been wondering if that dx was correct because the pain isn't too bad it's more the fatigue that gets to me.



                  ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
                  I was also diagnosed with Fibro about 7 years ago. I was also thinking that that diagnosis may be right until other strange symptoms started to happen. So when I moved back to NJ I decided to see a new rheumatologist who disagrees with the diagnosis and think my symptoms are more consistent with MS. Went to the neurologist and they did an MRI and didn't mention a thing about a white spot on the images. I looked through all of them myself. My bf has MS and had been telling me for years that he thinks it's what I have as well. He isn't a doc but he had years of experience with it. I have loss of feeling in my feet and legs. Spasticity in my feet on and off. My toes will just freeze up and contort and it hurts. But it's on and off and last for a few minutes. I have extreme exhaustion that by 8pm I'm passed out on the couch and can't seem to wake from it. Sometimes I get tremors in my hands and spots that feel numb. It's weird. I have bladder issues as well. I can't seem to find anyone that wants to dig further so I just deal with it.

                  Comment


                    #10
                    Question LP

                    I am scheduled to do an LP tomorrow and am pretty scared. Does it hurt ? I've also heard about people getting extreme headaches from this that lasts for quite awhile. What's your experience with having this procedure ?

                    Comment


                      #11
                      Originally posted by macaquemom2 View Post
                      I am scheduled to do an LP tomorrow and am pretty scared. Does it hurt ? I've also heard about people getting extreme headaches from this that lasts for quite awhile. What's your experience with having this procedure ?
                      For me the actual procedure didn't really hurt - was more uncomfortable. And since I felt so good (and relieved) when it was over, I disregarded the instructions that I had been given about just laying around the rest of the day.
                      Because of my own hardheadedness I was one of the 'lucky ones' that got the terrible headache. It required a 'blood patch' to correct and THAT hurt.

                      Follow the instructions you are given and everything should be fine. This time tomorrow you should be laying on the couch watching TV.

                      Comment


                        #12
                        Spinal Headache

                        I also had no issues with the actual LP. However, I did follow all of the instructions afterwards and still got the spinal headache, which was horrible. This is before I switched doctors and I was put off for 6 days (during which I literally could not do anything but lay on the couch) and finally went in for a blood patch which worked immediately. My new doc said there is no reason to wait if you develop the headache because the blood patch works so fast. My advice….do exactly what they tell you after your LP and if you develop the headache, call immediately and insist on a blood patch. That being said, most people don't get the headache and are good to go after the 24 hours of laying flat. Good thoughts coming your way!

                        Comment


                          #13
                          The same story

                          This my story as well, down to every detail. I have an order for the MRI, not yet scheduled due to finances. I have numbness in my right leg, burning in my face and mouth, extreme left side weakness. Also dx with fibro 20 years ago. At this point, everything except MS has been ruled out. Please keep us posted on your journey.

                          Comment


                            #14
                            Looking at symptoms and MRI results, over time, and an LP were the tools used to dx me. Hopefully, you'll get a dx following your procedure, especially since it sounds like you have had symptoms occur more than once. That helps your condition fit the medical criteria that docs need to follow to dx MS.

                            Keep us posted on what's happening with you.
                            ~ 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


                              #15
                              Wow.

                              Originally posted by firemom31 View Post
                              This my story as well, down to every detail. I have an order for the MRI, not yet scheduled due to finances. I have numbness in my right leg, burning in my face and mouth, extreme left side weakness. Also dx with fibro 20 years ago. At this point, everything except MS has been ruled out. Please keep us posted on your journey.
                              I have been battling a burning senation on my face (and other areas) since 2002!!!!! No answers. Clear MRIs thru the years. Normal neuro exams. It's REALLY hard to have these symptoms pop up here and there and not have an answer.

                              And the pain with my face sizzling all day is unbearable sometimes!!!

                              Did you have clear MRIs thru the years or were they just inconclusive??

                              I'm interested in your story.

                              I don't want MS...but all symptoms I've experienced thru the years always Google back to MS. Not to mention an eye disease I was dx with in 1994 that is linked to MS. It's called Pars Planitis. I was one of the lucky few with no real issues from it and hope b it never returns.

                              I'm aiming for another neuro appt soon and asking for one more MRI and of its clear, I'll try to quit worrying about it being MS. Of course I've been told it's NOT by a number of neuros.

                              It's the in between doctors that mention it to me....and then it just makes me feel the neuros are missing something.

                              Again, I don't want MS.....just want an answer. All I get is anxiety. Hell yes I have anxiety!!

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