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    Ms with normal tests?

    Hi guys been on here before but still having issues
    basically started with

    December - lhermittes that has pretty much gone away, then constant hand tingling that is now rarely there,

    feb - left foot then right foot tingling then burning, now only left foot on and off

    march - arm aching only right side with pinching pains in legs

    april - legs go very stuff when starting to walk, calfs sometimes, then thighs, then hamstrings along with burning thighs on and off

    may - arms pains biceps and then they ache and get heavy painful from neck down to hands


    Ive had three neuro exams all normal except for lhermittes

    mri of brain in jan and April nornal
    mri of cervical spine feb and April normal
    mri of full spine may normal

    lumbar punxture may normal

    now my neuro is saying he doesn't think Ms but can't rule it out, the second opinion neuro says not Ms, had an emg and the chap said not Ms it's almost too all over and aggressive for ms

    what do I do next? Could it be Ms but not show yet? If it's ms would it be ppms or RRMS?

    im a 30 year old man previously healthy, had a sinus infection before all this, one neuro even suggested a post viral issue

    #2
    Hi Krisp,

    Sorry to hear you've been having these symptoms. But, none of them are exclusive of MS, not even the Lhermitte's sign . Your symptoms could be caused by other things, like the post viral thing a past neuro suggested, possibly a slipped disc, or even a vitamin B12 deficiency. Only a qualified neurologist, with years of training, can make a proper diagnosis. (Not sure where the EMG guy has gotten his information , but he's not qualified to make a diagnosis.)

    Since your neuro exams (minus the Lhermittes sign), MRIs, and lumbar puncture were all normal, according to the McDonald criteria (MS http://www.nationalmssociety.org/Nat...osis-of-MS.pdf) you would not be diagnosed with MS.

    If it were MS, you would be diagnosed with RRMS, because symptoms have gone away. http://www.nationalmssociety.org/What-is-MS/Types-of-MS. Whatever is going on, I hope it is treatable and not MS. If your symptoms continue, please keep pursuing a diagnosis of something.

    Best of luck
    Kimba

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

    Comment


      #3
      Hi Kimba

      thankyoi so much for taking time to give me such a detailed reply it's genuinely really appreciated

      im going through crap here worrying about not being here for my family so any advice is a great help

      i was hoping RRMS but then people with PPMS have told me their symptoms come and go. The mri's showed some degenerative disc issues and slight bulging discs at 4-5 levels but nothing major.

      ive had b12 done 450, vit d 110, EBV which had antibodies but waiting on numbers and waiting on Lyme disease.

      ive had this sore throat and ear when swallowing since this all started so maybe viral I really hope and pray so

      its the lhwrmittes and the leg muscles getting tight and painful that led me towards Ms but nothing's showing yet

      Comment


        #4
        Hi, and let me be clear that I think you have something bad going on. I am really sorry for this. I am not a doctor. IMO you need to get a lot of blood tests including vitamin D and B-12. There are other things in you blood that should be monitored like hormone levels etc. If you had several MRI' s of your spine and brain, your neurologist should see that there is a possibility of neurologic disease. Continue to ask your doctor about your condition/symptoms. Good luck

        Comment


          #5
          Hi jerry
          why do you say something bad? Also what do you mean my neuro should see something neurological with normal mris? I'm confused
          Also what hormone tests would you suggest? Like I said IVE had b12 vit d thyroid esr crp and others

          Comment


            #6
            Hi Krisp,
            I wasn't clear enough in my last post. I mean there is something bad going on if your tests are normal but you feel messed up . I know that you said you had these blood tests but do you know what your vitamin D and B-12 levels are? Some doctors will say that your levels are OK when the levels are borderline low. That isn't good enough! These levels need to be above median ! IMO but what do I know? I am not a doctor. You need to discuss this with your doctor, if the doctor can give you more than 5 minutes! I have just spent more than 5 minutes on this post ! Good luck

            Comment


              #7
              Hi Jerry
              tjanks for helping it's really appreciiated
              i think my b12 was 349 then 450
              i think my d level was 110 after supplementing for about 3 months 5,000iu every other day
              so all seemed normal
              im waiting on lymes results but really don't see it being that

              other than that I have the flu throat thing I had since this all started but that's about it, sumptoms come and go really on different days

              back in with the neuro tomorrow too so that should be interesting

              Comment


                #8
                Hi guys
                the neuro is dismissing Ms right now which I don't understand?
                he did another neuro exam basically the pin prick on legs, leg and arm reflexes, foot scratch thing and pulling the legs and pushing etc and said all normal

                the thing is the sympotms are still coming and going, this weekend I had the leg pains a lot when walking, the usual foot burning hand tingling and now a patch on my thigh that feels like waters on it for maybe ten minutes then goes away

                where do I go next? any ideas anyone?

                Comment


                  #9
                  Hi Krisp,

                  Originally posted by Krisp View Post
                  the neuro is dismissing Ms right now which I don't understand?
                  Multiple Sclerosis is off the table because you have no signs of the disease. All of your testing as well as your Neurological exam/evaluation is normal.

                  Krisp, please try not to hyper-focus on Multiple Sclerosis as something you have, it's really not mentally healthy.

                  Take care.
                  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


                    #10
                    Hi Krisp:

                    This scenario happens far too often. A person who has pain and weird body sensations does an Internet search to see what might be causing them. This is critical: multiple sclerosis ALWAYS comes up in a search as a possibility. ALWAYS. And because it always comes up as a possibility, too may people just assume -- based only on vague generalities they read -- that they have MS.

                    They don't even pay attention to the fact that there has to be EVIDENCE for MS in order for it to be diagnosed. Because it's the first possibility they read about, they assume -- again based on nothing but generalities -- that MS is what they have. And because they've already convinced themselves that they have MS, they're absolutely SHOCKED when there's no evidence of it.

                    It's apparent that, based only on general descriptions of what you read about MS, you convinced yourself that you have MS. You skipped over the parts about diagnostic criteria and the necessity for there to be evidence of MS in order to have it diagnosed. And that's why you don't understand why MS has been dismissed as a possibility.

                    You have been tested very well and you have no signs of MS. Everything else is just an assumption on your part.

                    No matter how many times you ask the questions, the answers are always going to be the same. You have absolutely NO evidence of MS. You can't be diagnosed with -- insert your disease of choice -- based on your fear and assumptions alone. Your symptoms aren't "all in your head," but your assumed cause of your symptoms, is. And it's not mentally healthy for you to keep believing that you're the one exception in the entire world who has a "mystery" case of MS -- with absolutely no evidence -- that no one is able to identify.

                    And, again, no matter how many times this comes up, the answer in another way is always going to be the same. You have at least one medical condition, and it isn't the one you think you have. Your anxiety is driving you to make unfounded assumptions about your health that are at least as harmful as any other physical condition you might have. And you won't be able to take a correct and active part in caring for your health if you're running on anxiety and assumptions.

                    I don't know what the healthcare system is like in Wales. But, in the US, a next step for you would be to have a full workup by a rheumatologist. There's a possibility that that might come up normal as well.

                    But, no matter what, you must get your anxiety under control and find a way to live with the uncertainty that a cause for your pains and other symptoms might not be able to be found.

                    Comment


                      #11
                      Hi snoopy, j reagan

                      thanks guys I really really appreciate your time

                      snoopy, I know your right about hyper focusing on Ms, as soon as I read about Lhermittes and Ms I can remember the exact moment I got up and ran about in a haze saying to my other half its Ms!

                      jreagan thankyou so much for the time you've taken to go to that extent with the answer. I've had an anxiety and ocd issue for about 15 years that had kicked off majorly about a Month before all this when we moved house and I hated the new house, then the lhermittes started and then the more I read the worse I seemed to get!
                      i know that anxiety is playing apart in All this I'm not sure how much though. I'm glad At this stage Ms has been ruled out but it's all this reading of people having nothing show early That worried me.
                      The one neuro did say for all the issues I have, the mri should be blatantly obvious
                      i guess I'll try deal with the anxiety and get in to see a rheumatologist asap
                      im away on holidays this week though so trying to relax
                      thanks again all

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