Announcement

Collapse
No announcement yet.

New to this...what might happen from here?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    New to this...what might happen from here?

    **PLEASE forgive me if I am somehow posting in an inappropriate place. I am totally new to this board...thanks!**

    If anyone can share insight about the process from here, I’d appreciate it!

    I am a 51-year-old woman whose brain MRI with contrast shows “scattered nonspecific hyper intense foci”...and I think I’m still quite young for that.


    For over a decade, we’ve been trying to chase down a diagnosis for my days-to-months-long “spells” —ones that include dizziness, extreme fatigue, blood pressure swings, eye pain/blurry sight, headaches, weakness, brain fog, muscle twitches, numbness/tingling, gastrointestinal stuff. They often come on when I get an infection, deal with major stress, and/or just physically overdo it.

    I’d recently become passive-aggressive re doctors and just stopped chasing an answer. That is, until my latest “spell”—now lasting over a month with symptoms keeping me homebound—sent us to the ER. The doc there recommended an MRI and suggested something like MS.

    That was two weeks ago.

    Out of all the gastroenterologists, endocrinologists, rheumatologists, hematologists, allergists, internists (and yes...even a neurologist!) I’ve seen, not one ever suggested brain imaging!. The neurologist even suggested “conversion disorder”...i.e., I was TELLING my body it was sick. Ugh.

    So...I go to my primary doc to request the MRI at the ER guy’s recommendation. I get it done, and the results are as mentioned earlier. I have an initial consult with a neurologist in two weeks, being very fortunate to get in so fast because I can self-pay.

    I’ve waited several days to look at any info about MS because it was much easier to speculate and now harder to deal with facts.

    That’s my story, really. I know many of you have struggled longer and harder for a diagnosis, and my heart goes out to you,

    I guess I’m posting here because I wonder what happens next. My husband and I are pretty darned sure it’s MS at this point. I know it takes a long time and usually several tests to confirm it....so do you think it will it be much longer before I can receive treatment? AND can get on with LIFE...?

    My family visits NYC at Thanksgiving every year, and I’m used to traipsing all over the city (in the past years, to my detriment). This is a “first-world” problem indeed, but I’m trying to grasp what the trip will look like for me this year and if I should do some extra planning.

    I guess it’s kinda hard to anticipate next month when you don’t even know how much worse you’ll feel tomorrow. I also deal with Hypermobile Ehlers-Danlos Syndrome.

    Thanks for any ideas/thoughts you can share. Truly. Bless you.

    #2
    Originally posted by artgurl View Post
    I guess I’m posting here because I wonder what happens next. My husband and I are pretty darned sure it’s MS at this point.


    While I'm sure it is a relief to have hopefully found something to explain your symptoms I would attempt to avoid speculating until you see the neurologist. Easier said than done, I know, but a waste of time and energy to get overly invested in MS if that isn't what you end up having.

    Originally posted by artgurl View Post
    I know it takes a long time and usually several tests to confirm it....so do you think it will it be much longer before I can receive treatment? AND can get on with LIFE...?
    If you get a diagnosis of whatever I can't imagine it would take too long to start treatment. It sounds as if you have been continuing to live your life throughout this entire process so I would recommend you continue with that excellent strategy.

    Originally posted by artgurl View Post
    My family visits NYC at Thanksgiving every year, and I’m used to traipsing all over the city (in the past years, to my detriment). This is a “first-world” problem indeed, but I’m trying to grasp what the trip will look like for me this year and if I should do some extra planning. [/FONT][/COLOR]
    I guess whatever extra planning you may have required in the past? The only thing different about my vacations since diagnosis is that I bring my medication with me.

    Best wishes and please keep us posted.
    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
    Anonymous

    Comment


      #3
      Originally posted by artgurl View Post
      **PLEASE forgive me if I am somehow posting in an inappropriate place. I am totally new to this board...thanks!**

      If anyone can share insight about the process from here, I’d appreciate it!

      I am a 51-year-old woman whose brain MRI with contrast shows “scattered nonspecific hyper intense foci”...and I think I’m still quite young for that.


      For over a decade, we’ve been trying to chase down a diagnosis for my days-to-months-long “spells” —ones that include dizziness, extreme fatigue, blood pressure swings, eye pain/blurry sight, headaches, weakness, brain fog, muscle twitches, numbness/tingling, gastrointestinal stuff. They often come on when I get an infection, deal with major stress, and/or just physically overdo it.

      I’d recently become passive-aggressive re doctors and just stopped chasing an answer. That is, until my latest “spell”—now lasting over a month with symptoms keeping me homebound—sent us to the ER. The doc there recommended an MRI and suggested something like MS.

      That was two weeks ago.

      Out of all the gastroenterologists, endocrinologists, rheumatologists, hematologists, allergists, internists (and yes...even a neurologist!) I’ve seen, not one ever suggested brain imaging!. The neurologist even suggested “conversion disorder”...i.e., I was TELLING my body it was sick. Ugh.

      So...I go to my primary doc to request the MRI at the ER guy’s recommendation. I get it done, and the results are as mentioned earlier. I have an initial consult with a neurologist in two weeks, being very fortunate to get in so fast because I can self-pay.

      I’ve waited several days to look at any info about MS because it was much easier to speculate and now harder to deal with facts.

      That’s my story, really. I know many of you have struggled longer and harder for a diagnosis, and my heart goes out to you,

      I guess I’m posting here because I wonder what happens next. My husband and I are pretty darned sure it’s MS at this point. I know it takes a long time and usually several tests to confirm it....so do you think it will it be much longer before I can receive treatment? AND can get on with LIFE...?

      My family visits NYC at Thanksgiving every year, and I’m used to traipsing all over the city (in the past years, to my detriment). This is a “first-world” problem indeed, but I’m trying to grasp what the trip will look like for me this year and if I should do some extra planning.

      I guess it’s kinda hard to anticipate next month when you don’t even know how much worse you’ll feel tomorrow. I also deal with Hypermobile Ehlers-Danlos Syndrome.

      Thanks for any ideas/thoughts you can share. Truly. Bless you.
      Hello artgurl and welcome

      This info from the National MS Society explains the MS Diagnosing process:

      https://www.nationalmssociety.org/Sy.../Diagnosing-MS

      Not everyone has to wait forever for a diagnosis. It does take some time, though, for tests to be scheduled, then done, and then results.

      Let us know if the above link helped to answer some of your questions, ok?

      Take Care
      PPMS for 24 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        I could have written your post. I was dx at 50 also and had most of the same symptoms. My doctor kept telling me I was stressed. Finally got a new doctor who ordered a MRI and that's all she wrote. When she got the results she immediately sent me to a neuro who diagnosed and had a nurse at my door that same day to start an IV.

        This was in 2001. I am still having some of the same symptoms as I had back then. For some of them there is not much you can do. I was on Copaxone for years until I started having some side effects. Now I'm doing fairly well. Still walking etc. But still dizzy and exhausted. Of course, at 69 years old things have changed and I'm sure will continue to do so. But basically I'm okay.

        Take an active course in your treatment. Stay here with us and ask lots of questions. Your symptoms really do sound like MS.

        Hang in there.
        Marti




        The only cure for insomnia is to get more sleep.

        Comment


          #5
          Hi artgurl and welcome. I was diagnosed just after my 51st birthday. That was 10 years ago. There is one suggestion that I have for you . Find an MS Specialist neurologist to make your diagnosis . Don't let a general neurologist treat you like they are painting a picture by numbers. And if you can spend a weekend in NYC, do it . There is nothing 'predictable' in MS from my experience. Good Luck

          Comment


            #6
            Thanks so much for that tip re the neurologist....very useful! I’ll plan on having fun in the city, come what may 😊 Cheers,
            Originally posted by JerryD;[URL="[URL
            tel:1522544[/URL]"]1522544[/URL]]Don't let a general neurologist treat you like they are painting a picture by numbers. And if you can spend a weekend in NYC, do it . There is nothing 'predictable' in MS from my experience. Good Luck

            Comment


              #7
              Thanks!

              Originally posted by JerryD;[URL="[URL
              tel:1522544[/URL]"]1522544[/URL]]Find an MS Specialist neurologist to make your diagnosis . Don't let a general neurologist treat you like they are painting a picture by numbers. And if you can spend a weekend in NYC, do it . There is nothing 'predictable' in MS from my experience. Good Luck
              Ver useful information re the neurologist...and thanks for the encouragement about visiting the city! It’s hard to think about missing out on all the fun, MS diagnosis or not. I want to believe that hearing the words won’t mean I can’t do the things I love... Cheers, Leslie

              Comment


                #8
                Thanks so much!
                Originally posted by Jules A;[URL="tel:1522541"
                1522541[/URL]]While I'm sure it is a relief to have hopefully found something to explain your symptoms I would attempt to avoid speculating until you see the neurologist. Easier said than done, I know, but a waste of time and energy to get overly invested in MS if that isn't what you end up having.



                If you get a diagnosis of whatever I can't imagine it would take too long to start treatment. It sounds as if you have been continuing to live your life throughout this entire process so I would recommend you continue with that excellent strategy.



                I guess whatever extra planning you may have required in the past? The only thing different about my vacations since diagnosis is that I bring my medication with me.

                Best wishes and please keep us posted.

                Comment


                  #9
                  It's good to hear that you have a possible dx. But, please remember that, until a doctor determines that you meet the McDonald criteria for an MS dx, it remains just a possibility. Lots of symptoms and, even lots of MRI results, can "mimic" MS. Google: differential diagnosis for MS.

                  I'm glad that you have an upcoming appointment with a general neurologist. If you don't have MS, a neurologist can help you to continue to explore other options. But I echo Jerry D's suggestion to also seek out an MS specialist. They have additional training and can help to dx MS and to treat it more effectively.
                  ~ 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
                    THANK YOU!

                    Thank you to all of you who took time to respond. It makes my world a bit brighter to know you're here...especially since I peed myself the other day and fell sideways last night on the pavement and messed up my cheekbone. It's a very dark path to walk now, and despite the support and love of family and friends, I feel terrible alone. I fear that my life is over because my symptoms are progressing so quickly.

                    I praise all of you for being willing to help a stranger when it comes to this crappy disease. Again, thanks so much!

                    Comment


                      #11
                      Hi artgurl,

                      Sorry to hear about both accidents. Hope you didn't get hurt too bad.

                      I am sure you know there are multiple diseases that can mimic MS. This diagnosis comes once an MRI shows lesions consistent with MS, and other possibilities ruled out. It takes patience. I am glad you will see a neurologist.

                      We definitely get how you are feeling. As hard as it may be, document your symptoms so they get a feel for frequency, severity, and duration. But while doing this, try not to center your focus on them. It will just make things worse.

                      Take care.
                      Kathy
                      DX 01/06, currently on Tysabri

                      Comment

                      Working...
                      X