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    Thanks, and Hello!

    Ive been lurking around for a few weeks and just started posting. I am a 44 year old man, live in NYC, and am currently in Limbo with symptoms but no diagnosis. Its been very hard on me but I am trying to tough it out. I was wondering if anyone on the boards knew what MS Center in NYC was held in the highest regards? Ive been bouncing around thinking I will know the right one when I feel it, and have an appointment with my third MS specialist coming up in a few weeks. Any input on the NYC MS situation would be appreciated!

    #2
    Originally posted by Xyz789 View Post
    Ive been lurking around for a few weeks and just started posting. I am a 44 year old man, live in NYC, and am currently in Limbo with symptoms but no diagnosis. Its been very hard on me but I am trying to tough it out. I was wondering if anyone on the boards knew what MS Center in NYC was held in the highest regards? Ive been bouncing around thinking I will know the right one when I feel it, and have an appointment with my third MS specialist coming up in a few weeks. Any input on the NYC MS situation would be appreciated!
    Hello Xyz and welcome

    Have you seen this info, Find Doctors and Resources, on the National MS Society website?

    I entered the zip found in your profile (and within 50 miles), but you can change if you want to.

    https://www.nationalmssociety.org/Re...c-be265249a503

    Hopefully someone in NYC will see your post and help out too.

    In any case, good luck!

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Originally posted by KoKo View Post
      Hello Xyz and welcome

      Have you seen this info, Find Doctors and Resources, on the National MS Society website?

      I entered the zip found in your profile (and within 50 miles), but you can change if you want to.

      https://www.nationalmssociety.org/Re...c-be265249a503

      Hopefully someone in NYC will see your post and help out too.

      In any case, good luck!

      Take Care
      thanks so much!

      Comment


        #4
        Yeah; limbo is tough.

        Here's hoping you find a good doctor and get a dx soon.

        Welcome to MSWorld.
        ~ 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


          #5
          Welcome. Not having answers is frustrating. Hope you get some soon. Lots of luck.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            I know you all arent medical professionals, and I have had, and continue to have, plenty of appointments. But Ive also found a lot of information and perspectives here that doctors haven’t shared, and I am really taking my self advocacy very seriously. To that end, I have questions for your feedback.

            Im at a place where I think, as many people here do, that I may have been having symptoms going back over 18 years or so. Mostly bladder urgency, and then facial numbness a few years ago. Problems always resolved themselves within weeks, so I thought nothing of it.

            But my current situation has been going on for almost 7 months now. Tremor in hands, numbness in hands and feet, memory issues, bladder urgency, tightness in my calves, twitching all over, ringing and popping in my ears, now I am having crazy night sweats and trouble sleeping, etc. Everything comes and goes, like the bladder only lasted a few weeks, but the whole suite of symptoms is sticking around and rotating throughout my body. Memory issues everyday.

            I guess my question is: are the doctors looking for a flare? I see so much written about people going totally and temporarily numb or blind and it goes away. Something big and obvious. And it seems like the doctors are looking at me and not seeing a “flare” like that and being dismissive.

            Ive had a lot of tests since May. First MRI came back with “a few tiny foci” but nueros said not of a size, shape or location to cause concern. Spine MRI clear. Contrast MRI came back as “normal MRI of the Brain”, and Lumbar Puncture showed no obands in relation to my serum. These were all done at highly ranked Academic Med centers in NYC.

            Any thoughts on how to continue advocating for myself beside third and fourth opinions? Is it “just keep going”, have patience and wait? If, indeed, this has been going on for 18 years, there would be something distinct and irrefutable on my MRI, no?

            Any advice welcome.

            Comment


              #7
              Originally posted by Xyz789 View Post
              I guess my question is: are the doctors looking for a flare? I see so much written about people going totally and temporarily numb or blind and it goes away. Something big and obvious. And it seems like the doctors are looking at me and not seeing a “flare” like that and being dismissive.

              Ive had a lot of tests since May. First MRI came back with “a few tiny foci” but nueros said not of a size, shape or location to cause concern. Spine MRI clear. Contrast MRI came back as “normal MRI of the Brain”, and Lumbar Puncture showed no obands in relation to my serum. These were all done at highly ranked Academic Med centers in NYC.

              Any thoughts on how to continue advocating for myself beside third and fourth opinions? Is it “just keep going”, have patience and wait? If, indeed, this has been going on for 18 years, there would be something distinct and irrefutable on my MRI, no?

              Any advice welcome.
              Hmmm. Are doctors looking for a flare -- good question. It's, actually, a question I wouldn't have thought to ask. At this point, I suspect, they are looking for a diagnosis. Regardless of what the diagnosis turns out to be, multiple illnesses could have flares.

              If docs are looking for a dx, then, when they make a diagnosis, they can begin to look at strategies to treat the illness (DMD -- disease-modifying meds). But, if they're just looking for a dx and not a flare, then they may not be considering how to treat your symptoms.

              However, if they identify what you have as a likely flare, in whatever illness it may be, they could treat the symptoms of the flare. Even before they have diagnosed an illness. is that why you're asking? If it's a flare, it could be treated with steroids. Even if it's not a flare, the symptoms might benefit from treatment with other meds.

              The thoughts that your questions triggered in me take me back to my pre-diagnosis stage. My neuro was looking for a dx, and while considering MS as a possibility, was ruling out all kinds of other illnesses. But, he was focusing on finding a dx. And, my symptoms continued to become worse and worse. It was actually my husband's personal care physician, who was also a personal friend of the family, that prescribed steroids to help to manage the symptoms, because I was so very ill and still in limbo. He seemed to be quicker to realize that my symptoms needed to be acknowledged and managed, even while the process of being diagnosed was still underway.

              Is that the direction you're going with your question? That, if you are in a flare, regardless of the dx, the flare needs to be acknowledged and treated? Or, even if your symptoms aren't triggered by a flare, they still could benefit from treatment?

              Or, am I reading things in between the lines that aren't there? Are you asking for different reasons?
              ~ 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


                #8
                Its not necessarily what I was getting at, but its very helpful advice, regardless. Thank you very much.

                I am just wondering if I could possibly be in a flare for...what is going on almost 7 months now. With little to no evidence on any MRI or LP? In my attempt to just buck up and get through it till it goes away, I didnt think it would last this long. And the new night sweats just seem like a kick in the pants to anything getting better/remitting anytime soon.

                Comment


                  #9
                  Most flares don't last that long, even without steroids. I seem to be an exception to that.

                  Prior to diagnosis, my second flare went on and on and got worse untily husband's PCP rx'd steroids. After that, I always had steroids until two other times. I won't go into detail, but they were also not resolved, and got worse, until steroids were started. Maybe not seven months, but sometimes 3-5 months.

                  So, yeah. In your situation, I don't know if it's still a flare that would benefit from steroids.

                  But that's a question you could ask. You could also ask about meds for symptom management.

                  In the meantime, take care of yourself.
                  - Get enough sleep.
                  - Prevent stress when possible. Learn how to manage it when it's not preventable.
                  - Consider yoga, mindfulness, meditation, a cup of tea, a soothing bath, listening to relaxing music, deep breathing, identifying your "happy place" and going there in your mind, etc.
                  - Eat a healthy diet. Lots of greens and other fruits and vegetables (consider 9 total per day), grass fed meats / free range poultry (sparingly), as much wild- caught fish as you want,. Consider wheat free, dairy free, no can sugar or artificial sweeteners (honey and 100% maple syrup ok; stevia ok).
                  - Exercise moderately.
                  - Get rid of toxins in your environment.
                  ~ 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


                    #10
                    Since I had a negative LP, I am finding it hard to believe with my symptoms. Is that crazy? Is there grounds to ask for a second LP with the fear I had a false negative? Thoughts welcome.

                    Comment


                      #11
                      Originally posted by Xyz789 View Post
                      Since I had a negative LP, I am finding it hard to believe with my symptoms. Is that crazy? Is there grounds to ask for a second LP with the fear I had a false negative? Thoughts welcome.
                      Hello Xyz

                      Originally posted by Xyz789 View Post
                      Ive been bouncing around thinking I will know the right one when I feel it, and have an appointment with my third MS specialist coming up in a few weeks.
                      When you have the appointment with your third MS specialist, discuss this concern about a false negative LP.

                      He may want to do another one.

                      It's a good idea to write down all of your questions and concerns, as you think of them before the appointment, and take them with you.

                      Take Care
                      PPMS for 22 years (dx 1998)
                      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                      Comment


                        #12
                        Thanks KoKo. Will do.

                        Comment

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