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    #1

    Finally an answer...

    Saw a wonderful neurologist (MS specialist) today who gave me a diagnosis I didn't want to hear but at least it's an answer. I too had made the rounds, told I was complicated since I also have orthopedic issues.

    So despite negative blood work and LP, MRI shows one major lesion and although written report says "non-specific", this doctor said it was specific for PPMS. Also said I definitely never noticed the first symptoms which could have been 10 years ago.

    I'm not happy but I am relieved that I have an answer and will now start on a combo of meds (not DMDs) and add specific supplements. Also exercise and PT.

    I'm still the same person I was yesterday only now I can make a plan to remain as mobile as long as I can. If I fall down, I'll fall down fighting, lol!!

    I would appreciate any info from other PPMS'ers on what they are doing (diet, exercise, meds, etc) to deal with this disease. And to all of you who are tired and frustrated going through the process...don't give up!!

    Thanks!
    Tags: None
    #2
    Hi, I'm also PPMS. It's a club that no one wants to belong to!

    I exercise to my ability, which isn't a lot, but it helps. I have been attending MS specific PT and OT for the past few months as well.

    I do have right sided weakness, spasticity, foot drop and a very weak right hip flexor so I have to wear an AFO, use a cane and for longer distances I use a rollator walker.

    Meds, just 4-aminopyridine for fatigue and movement. I'm still vegan and was before diagnosis. Generally my health is very good. I had one cold three years ago and before that, eight years prior. Bloodwork aside from vitamin D has always been great.

    Anyway, I'm glad you got a diagnosis even though it's sucky. I always think it's better knowing what you're dealing with.

    Comment

      #3
      hi I am also primary progressive. Getting a diagnosis of MS (RRMS, SPMS. PPMS...) it's like getting a 100 pound weight taken off of each shoulder. Then the realization sinks in, and there is a myriad of emotions you may or may not face. I was in limbo for seven years and I put off going to see the doctor for a few years before that. I'm now am 12+ years into this after a formal diagnosis.

      I am on all kinds of meds ( I am also diabetic and take pills for that also). I take 22 pills every morning (7 of them are vitamins), two more at lunch, six more at dinner, and two at bedtime! When the pharmacy is running low, they call me. ROFLMBO!

      Good luck to you.
      hunterd/HuntOP/Dave
      volunteer
      MS World
      hunterd@msworld.org
      PPMS DX 2001

      "ADAPT AND OVERCOME" - MY COUSIN

      Comment

        #4
        too many pills

        Hunterd, you are not alone!

        I say every month as I hit the out-patient pharmacy where I work...

        I tell them, "I'm here to pay the monthly rent payment! "

        The only OTC I take are cranberry extract. I may not top you, but, I use pill "cups" to measure out my night and next mornings meds. My purse...well, I carry a small pharmacy just in case! If I was pulled over and searched....!!??
        After all, I do live in an earthquake ridden area!
        Disabled RN, Cardiac Intensive Care
        Dx'd 11/03/2005, Sx's for 15+ years prior
        STOPPED DM's 10/15/2010, last one, Tysabri

        Don't ask for a better life, ask to be a stronger person!

        Comment

          #5
          I am happy to hear that you have gotten some answers. I am sorry that it has to be MS. I am PPMS, also. There is a thread here that is for PPMS/SPMS ers. I can only offer you a little advice. Keep a watch on your vitamin D and B-12 levels. Good luck

          Comment

            #6
            Vitamins

            Thanks for all your replies. Putting together a shopping list of vitamins and suggestions would certainly help!!

            Comment

              #7
              Number One on the list: Cranberry extract! I use "triple strength". Nature's Bounty makes the one I use...been UTI FREE for years now.
              I have a neurogenic bladder so I never drink enough water.

              Annie
              Disabled RN, Cardiac Intensive Care
              Dx'd 11/03/2005, Sx's for 15+ years prior
              STOPPED DM's 10/15/2010, last one, Tysabri

              Don't ask for a better life, ask to be a stronger person!

              Comment

                #8
                Definitely a good multivitamin, B12, D3 (5,000 ui), calcium and magnesium.

                Comment

                  #9
                  Originally posted by pyablon View Post
                  Saw a wonderful neurologist (MS specialist) today who gave me a diagnosis I didn't want to hear but at least it's an answer. I too had made the rounds, told I was complicated since I also have orthopedic issues.

                  So despite negative blood work and LP, MRI shows one major lesion and although written report says "non-specific", this doctor said it was specific for PPMS. Also said I definitely never noticed the first symptoms which could have been 10 years ago.

                  I'm not happy but I am relieved that I have an answer and will now start on a combo of meds (not DMDs) and add specific supplements. Also exercise and PT.

                  I'm still the same person I was yesterday only now I can make a plan to remain as mobile as long as I can. If I fall down, I'll fall down fighting, lol!!

                  I would appreciate any info from other PPMS'ers on what they are doing (diet, exercise, meds, etc) to deal with this disease. And to all of you who are tired and frustrated going through the process...don't give up!!

                  Thanks!
                  Hi there!
                  Can I ask you what sort of symptoms you were experiencing? I also have a spot on my brain MRI that was "unremarkable" but my drs say no ms. In their opinion, my MRI was normal. I have had ongoing symptoms for a yr and a half. I am 28 and female. Prime MS age. Would love to hear back from you. Thaks

                  Comment

                    #10
                    Hi

                    As I have been told..PPMS is most commonly found in the age group of 40-50. My neuro said I've probably had MS for close to 10 years (I'm 62) but didn't experience symptoms until 2 years ago.

                    Even then I wrote them off (stiffness, occaisional tripping) as orthopedic problems or trying to keep up with my grandkids. I then became very hyperreflexic and was sent to the first neuro. I took a bad fall and that led me to more DRs. Had all the usual tests and they found only 1 flare in the pons.

                    All other tests were negative. Hope this helps!

                    Comment

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