Announcement

Collapse
No announcement yet.

Clinically isolated syndrome and treatment?

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

    Clinically isolated syndrome and treatment?

    On Friday, I have my first neuro appointment for MS in years. I now have four lesions, they follow the time and space criteria. Two are in my brain, two are in my optic nerve. At first I had about two to three flares a year. Now it's about six. I have ON, fatigue, heat related issues, migranes, muscle spasms, Lhermittes, joint pain, mood issues, cognitive issues that make it difficult to speak, and the awesome foot drop.
    I had Probable MS diagnosis from MS specialist for years. ( I guess this is CIS now)

    My question is this, can I ask after all this time and flares and lesions, to at least be treated- I've never been and I am at the point where I believe without treatment the foot drop will put me in a wheel chair.

    I've been diagnosed with fibro, and the treatment for the disease never worked. I am tired of being sick-- and tired of waiting to ride out the next flare. This last one was impossible to hide at work. -- I can usually say it's a cold, or a bug, or not enough sleep. Not being able to walk properly is pretty hard to make up an excuse for.

    Has anyone ever been successful at asking to be treated without diagnosis?-- or with CIS or probable MS? I've had non neuro's give me steroids -- ( THEY work) but never the neuro.

    Thanks!

    #2
    So sorry that you are still in limbo, after all of this time. I was without a diagnosis for almost two years. Your description (time and space criteria, lesions, more than one exacerbation) is enough that my neuro would have diagnosed. However, I do understand that it's complicated. Five years later, when I switched to an MS Specialist, she was unsure that MS was the accurate dx and she did some re-testing prior to confirming MS.

    Originally posted by asiel1 View Post
    My question is this, can I ask after all this time and flares and lesions, to at least be treated- I've never been and I am at the point where I believe without treatment the foot drop will put me in a wheel chair.
    My flares were treated with steroids prior to my dx, but I wasn't rx'd a DMD (disease modifying drug) until my dx. The first DMD I was rx'd wasn't very effective for me. After 5 years, I was switched to another one, which works much better at decreasing the frequency and severity of my flares. So, actually, I was not on a DMD that was effective for me during my first two years without a dx, or the next five years while I was on something else. I don't know if that helps with your question.
    ~ 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


      #3
      Originally posted by Mamabug View Post
      So sorry that you are still in limbo, after all of this time. I was without a diagnosis for almost two years. Your description (time and space criteria, lesions, more than one exacerbation) is enough that my neuro would have diagnosed. However, I do understand that it's complicated. Five years later, when I switched to an MS Specialist, she was unsure that MS was the accurate dx and she did some re-testing prior to confirming MS.



      My flares were treated with steroids prior to my dx, but I wasn't rx'd a DMD (disease modifying drug) until my dx. The first DMD I was rx'd wasn't very effective for me. After 5 years, I was switched to another one, which works much better at decreasing the frequency and severity of my flares. So, actually, I was not on a DMD that was effective for me during my first two years without a dx, or the next five years while I was on something else. I don't know if that helps with your question.
      Thanks! I am not certain I will be able to find an MS specialist here-- I had one in Texas, and was nearly at the point where probable was being changed to CIS. I moved here and just gave up. Unfortunately, without steroids and doc visits, my flares have gotten really terrible.

      I thank you for your kind words and thoughts during my visit on Friday. I truly appreciate them.

      Comment


        #4
        You're welcome. Best wishes in your continued quest for a diagnosis.
        ~ 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
          Originally posted by Mamabug View Post
          You're welcome. Best wishes in your continued quest for a diagnosis.
          And, please come back and let us know how your appointment goes on Friday!
          ~ 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


            #6
            Originally posted by Mamabug View Post
            And, please come back and let us know how your appointment goes on Friday!
            Doctor visit went well. My doctor has scheduled an MRI to get a better look. He agrees that the lesion in the eye is a new one, but would like to see if I have new ones in my brain as well. He has all of my previous MRI's and was able to review them, so he knows that the lesion is new. He saw the video my daughter took of my walking issues, and agrees that it is foot drop. I've been given medicine that will help manage my symptoms and for all of us, that is what's most important. Not a diagnosis, but relief.

            With that said, my medical record now states that I have a deymelinating disease of the central nervous system.

            Comment


              #7
              Originally posted by asiel1 View Post
              Doctor visit went well. My doctor has scheduled an MRI to get a better look. He agrees that the lesion in the eye is a new one, but would like to see if I have new ones in my brain as well. He has all of my previous MRI's and was able to review them, so he knows that the lesion is new. He saw the video my daughter took of my walking issues, and agrees that it is foot drop. I've been given medicine that will help manage my symptoms and for all of us, that is what's most important. Not a diagnosis, but relief.

              With that said, my medical record now states that I have a deymelinating disease of the central nervous system.

              Not sure how to edit, so I will just do this. I can not walk on my heels at all, and failed several other tests during neuro exam. Vibration ones, and also the heel toe drunk walk, I wobbled quite a bit. -- and since the drop foot ended Tuesday, I was feeling sassy and thought I was walking fine.

              Comment


                #8
                Originally posted by asiel1 View Post
                Doctor visit went well. My doctor has scheduled an MRI to get a better look. He agrees that the lesion in the eye is a new one, but would like to see if I have new ones in my brain as well. He has all of my previous MRI's and was able to review them, so he knows that the lesion is new. He saw the video my daughter took of my walking issues, and agrees that it is foot drop. I've been given medicine that will help manage my symptoms and for all of us, that is what's most important. Not a diagnosis, but relief.

                With that said, my medical record now states that I have a deymelinating disease of the central nervous system.

                Not sure how to edit, so I will just do this. I can not walk on my heels at all, and failed several other tests during neuro exam. Vibration ones, and also the heel toe drunk walk, I wobbled quite a bit. -- and since the drop foot ended Tuesday, I was feeling sassy and thought I was walking fine.
                Thanks for the update. I'm glad for you, that you might get some symptom relief, even if no definite dx yet. Maybe the new MRI will yield some help with more of a dx. I was dx'd following my 7th MRI. At that point, with the time and space elements of my flares, the MRI also began to "look than MS".

                Regarding my appointment, there's not a lot new. My doc did notice some increased weakness in my left hip. I asked about some exercises to help strengthen that, and she suggested things like walking, biking, sit-ups, leg lifts while sitting. I haven't had the balance to ride bike for over a decade, but I could ride an exercise bike or a recumbent bike.

                She scheduled an MRI for my next appointment, in 6 months. Following the 7 MRI's that I had in 2002-2003, I had a follow-up one in 2008 and one in 2013. So she wants to do another one next year.
                ~ 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


                  #9
                  Originally posted by Mamabug View Post
                  Thanks for the update. I'm glad for you, that you might get some symptom relief, even if no definite dx yet. Maybe the new MRI will yield some help with more of a dx. I was dx'd following my 7th MRI. At that point, with the time and space elements of my flares, the MRI also began to "look than MS".

                  Regarding my appointment, there's not a lot new. My doc did notice some increased weakness in my left hip. I asked about some exercises to help strengthen that, and she suggested things like walking, biking, sit-ups, leg lifts while sitting. I haven't had the balance to ride bike for over a decade, but I could ride an exercise bike or a recumbent bike.

                  She scheduled an MRI for my next appointment, in 6 months. Following the 7 MRI's that I had in 2002-2003, I had a follow-up one in 2008 and one in 2013. So she wants to do another one next year.
                  Sorry to hear about your balance being so poor. That is my biggest fear. I've been a cyclist my entire life. To not be able ride is awful. I could not ride easily with the foot drop .

                  Yes, let's hope the expensive MRI finally yields a diagnosis.

                  Comment


                    #10
                    If you do have a diagnosis of CIS, I believe Avonex was approved for treatment in CIS. I am not sure if any of the other DMTs are. But worth a conversation with your neuro.

                    Glad you were able to get symptom treatment.
                    Kathy
                    DX 01/06, currently on Tysabri

                    Comment


                      #11
                      You have given me a thought . I understand your problem with foot drop, I have it, too. I walked the Brooklyn Bridge about 5 years ago. I can't walk into my kitchen, now !
                      My question is: Has your doctor ever had a patient with CIS that fully recovered? Has your doctor had any CIS patients that progressed to MS?
                      A female friend of mine was diagnosed with CIS and after about 2 years, she was confirmed with RRMS. Then she was prescribed Copaxone.
                      I wish you Good luck!

                      Comment


                        #12
                        Originally posted by JerryD View Post
                        You have given me a thought . I understand your problem with foot drop, I have it, too. I walked the Brooklyn Bridge about 5 years ago. I can't walk into my kitchen, now !
                        My question is: Has your doctor ever had a patient with CIS that fully recovered? Has your doctor had any CIS patients that progressed to MS?
                        A female friend of mine was diagnosed with CIS and after about 2 years, she was confirmed with RRMS. Then she was prescribed Copaxone.
                        I wish you Good luck!

                        I recently read an article that MS is one of the most under diagnosed diseases because of the criteria is a bit strict. They reported that a large number of autopsies show undiagnosed MS. Hopefully, this will not be me.

                        Comment


                          #13
                          [QUOTE=pennstater;1503748]If you do have a diagnosis of CIS, I believe Avonex was approved for treatment in CIS. I am not sure if any of the other DMTs are. But worth a conversation with your neuro.

                          Glad you were able to get symptom treatment.[/QUOTE
                          Yes, me too. I have a rotten high deductible plan., so doctor visits and testing is tough. I may ask for Avenox if it has a generic. My insurance only covers generics. So I got steroids and baclofen. They should tide me over till we look at the MRI. I've been riding out flares with nothing for about two years now. So this should be heaven having two medications.

                          My doctor has been a neuro for years, trains other neurologists locally-- very widely respected in my community as "the neurologist" to go to. I am very grateful to have him. When he found out about my high deductible plan -- with a small HSA that restarts every calendar year he lowered his fee for my lengthy visit- to $46.00 and scheduled my MRI for Jan 2nd, 2018.

                          Comment


                            #14
                            Avonex, along with other DMTs are prescribed to slow progression down. The steroids and Baclofen are symptom management drugs and do nothing for progression. Just something to discuss.

                            I had pills not covered by my old insurance. My neuro would order the pill for 90days at double the dosage and I would use a pill splitter. That way, the one refill lasted 180days which helped tremendously with copays. Possibly an option for the Baclofen if you have co-payment issues?
                            Kathy
                            DX 01/06, currently on Tysabri

                            Comment


                              #15
                              Originally posted by pennstater View Post
                              Avonex, along with other DMTs are prescribed to slow progression down. The steroids and Baclofen are symptom management drugs and do nothing for progression. Just something to discuss.

                              I had pills not covered by my old insurance. My neuro would order the pill for 90days at double the dosage and I would use a pill splitter. That way, the one refill lasted 180days which helped tremendously with copays. Possibly an option for the Baclofen if you have co-payment issues?
                              My old neuro did this! Baclofen is cheap,and my insurance will pay for generics with a co-pay of ten bucks. They just do not pay for doc visits until I pay 6 grand out of pocket. ( yay) So paying for visits and testing is the issue. ( I hate insurance)

                              Comment

                              Working...
                              X