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pp, rr, sp????

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    pp, rr, sp????

    diagnosed last summer, 56 yr old, seeing ms neurologist in May, I have not started any DMD's, still working (barely). fatigue, stumbling brain, and more recently (last 6 weeks or so) pain in right arm and hip/leg stiffness which is painful. at this point I don't think that I have experienced a true remission....in 9 months. which makes me think this is not the relapsing remitting type. how do docs determine?? is there a test or is it simply seeing progression in symptoms? I had O bands on LP, lesions on cervical spine and brain when tested last summer. Should I request (or can I request) a new set of MRI's before appointment. I really do not want to treat RRMS if that is not what I have. Never have had steroids. take Provigil for fatigue, Vitamin D supplements and have made great strides in reducing work stress. Still feel crappy most days. Bummed.

    #2
    Hi frosty,
    I'm JerryD and I am 56, also. I was diagnosed in 2009 after struggling to work my job for 2 years. I knew there was something wrong but it took some time to get a definite diagnosis. You asked about the different types of MS and how the doctor makes the determination. Good question. It is difficult to make that determination. So, you should get a second opinion from an MS specialist. These are neurologists that take specialized training in MS treatment and such.
    You said that you take provigil. 100, 200, or what? Who wrote the script? You said that you take vitamin D. What was your level from your blood test? Everyone should know what their vitamin D values are. I hope that your doctor understands how MS works and he/she is working hard on your treatment. Good luck

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      #3
      Thank you

      I am seeing a MS neurologist at Rush in Chicago, he is the one who confirmed diagnosis after two local neuro docs diagnosed last summer. The Modafil (generic for Provigil) was prescribed by him. I do not know my Vit D levels but was told to take supplemental.Hoping to get more information at next appt in May.

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        #4
        I am sure that you have seen a credible doctor and that is encouraging. Why did your doctor tell you to start on a supplement and not specify a dosage or test your levels or give you the levels? If you know what your levels are, you can measure changes to verify if supplementing is working.

        From my previous experience, my PCP told me to start a vitamin D supplement. I found out that the vitamin D test was a blood draw. I did the blood test and it was in the 20's. I took 1000iu's daily and the numbers didn't improve measurably. I decided to begin 2000iu's daily. The levels improved very slightly, So, I started taking a 5000iu capsule, daily. After about 6 months my levels improved to above 50 ng/mL and have stayed above 60 ever since. That's my experience. You will need to figure on something similar for yourself. Good luck

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          #5
          Hey Frosty,

          I go to the same clinic at Rush. Good news is they are really sharp and were involved in getting Ampyra to market for walking and fatigue reduction. I see Balabanov and am on Tysabri. Diagnosed in 2010 (PPMS) after developing symptoms in 2008 (could not see a doc about the limping till 2009 becuase of family problems). Actually it was Dr. Weber at the orthopedic clinic who recognized that I had MS and not disc problems (I had incredible myoclonus, uncontrollable shaking in the legs if my foot was pushed a certain way. ) She got me the full spinal MRI and when they found the cervical lesions she referred me to Dr. Balabanov and after a brain MRI he confirmed I had PPMS and put me on Tysabri right away. I believe he told me that the guideline for diagnosis was 4 lesions in the spine and 8 in the brain. Anyway, you are in good hands. I still see Dr. Weber becuase she monitors and approves the PT I get 2-3 times a week. As a result I can still walk although with a cane and slowly. My GP, also associated with Rush put me on high dose Vit D for a month then 5000 iu daily and my vit D is normal now. I will be seeing her and Balabanov in june and will discuss the Biotin also. And guess what? I am 56 also! Think positive.

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            #6
            Just to add into the mix here, here is the link from NMSS describing the 4 types of MS. Might add some clarification. Hopefully, the neuro will help you in making the determination that is right for you.

            http://www.nationalmssociety.org/What-is-MS/Types-of-MS

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              #7
              Thank you

              Diggstech, I am also seeing Dr B. and have been very impressed and grateful to him for giving me time to wrap my mind around my diagnosis and come up with a plan. I also really appreciate that he is kind. I know the most important aspect is that your Dr. be very, very smart and up to date on treatments but for me his caring demeanor clinched the deal.

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