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Newly diagnosed - tons of questions

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    Newly diagnosed - tons of questions

    I was just diagnosed in June after a 2nd episode in 2 years. My right hand is partially numb - has been for about 2 months. I found a new neurologist after my first doc blew off the symptoms and said my case is so mild, he wouldn't treat it with any meds. My new doc put me on a 3-day steroid treatment, but I fear it was started too late. There has been no change in my hand and I wonder if I'll ever get the feeling back. Medical friends tell me to be patient (the numbness was in my entire arm and now it is just in my hand so they say that is a good sign), but I am feeling crazy, depressed, scared, you name it. It seems like most things I read say that people that get attacks should recover more quickly or they won't recover at all. Has anyone experienced a long period of attack and then gotten a full recovery?

    I am supposed to start Avonex this week and I'm scared about that too, but I'm not sure about the best alternative regarding meds. I'm wondering if Copaxone is a better option.

    Any thoughts or advice is welcome. Thanks.

    #2
    Hi

    Hi Sbryan. I can't offer much in the way of advice, except that from my experience (dx'd in May of this year), your emotional rollercoaster is right on cue. I am waiting on pins and needles to see the answer about the numbness, b/c I'm going on a month of numbness in my right arm/hand/chest/back. Called and told my neuro's nurse, and not even a callback. Does that mean it's not important? eep. Anyways, nice to meet you, hope things level out for you soon!
    Originally posted by sbryan View Post
    I was just diagnosed in June after a 2nd episode in 2 years. My right hand is partially numb - has been for about 2 months. I found a new neurologist after my first doc blew off the symptoms and said my case is so mild, he wouldn't treat it with any meds. My new doc put me on a 3-day steroid treatment, but I fear it was started too late. There has been no change in my hand and I wonder if I'll ever get the feeling back. Medical friends tell me to be patient (the numbness was in my entire arm and now it is just in my hand so they say that is a good sign), but I am feeling crazy, depressed, scared, you name it. It seems like most things I read say that people that get attacks should recover more quickly or they won't recover at all. Has anyone experienced a long period of attack and then gotten a full recovery?

    I am supposed to start Avonex this week and I'm scared about that too, but I'm not sure about the best alternative regarding meds. I'm wondering if Copaxone is a better option.

    Any thoughts or advice is welcome. Thanks.
    D&C 121:7-8 ...peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment

    Comment


      #3
      Hello sbryan

      Welcome to the MS World Forums!

      I don't get relapses because I have PPMS, but from my understanding the effects can last days, week, or months. So I'm thinking there is still the possibility that your hand numbness will resolve.

      All the various feelings you are experiencing are not unusual. It takes awhile to digest a diagnosis of MS, or any chronic illness for that matter.

      Glad you found us here. I'm sure you will benefit from the information on the various forums, and the support and shared experiences of our members too.

      Have you checked out the Medications Forum yet? You may want to read some of the threads there about Avonex and Copaxone. Or, you can start your own thread about your concerns with those DMD's.

      Good luck and let us know what you decide. Hopefully we can help you get through this

      Take care,
      KoKo
      PPMS for 26 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        welcome!

        Hi SBryan.

        Welcome but excuse me if I say I wish you didn't have to be here. I wish ALL of us didn't have to be here.

        Numb? Everyone is different. You're going to get sick of that phrase but it IS true. I was dx'd with MS in 1976 as a kid and again in 2008 as an adult. I have been on and off Rebif since June 08. My lapses were ignored cause 'nothing was wrong' according to my mother. I got better didn't I? Now, it takes longer to bounce back. And sometimes it doesn't. Sometimes I'm numb a few days, sometimes I few weeks. Usually my hands and my hips. That makes walking fun!

        I broke out in tears when the Neuro told me in 08. Then I got angry. Then I cried, then I got angry. Then I thought my life was over. .... Then I decided to live my life and take care of myself and my kids the best I can.

        so... take heart. If the numbness goes, hurray! If it lingers awhile, you WILL learn to live with it. You will be amazed at what you CAN do.

        come here to whine, complain, laugh and cry. we;ll listen..

        welcome.

        Comment


          #5
          Originally posted by sbryan View Post
          ...
          I am supposed to start Avonex this week and I'm scared about that too, but I'm not sure about the best alternative regarding meds. I'm wondering if Copaxone is a better option.

          Any thoughts or advice is welcome. Thanks.
          The Copaxone usually has no side effects, but it can have injection site reactions, red spots, bumps. The Avonex usually has side effects in the beginning and is a long needle, 1 1/4". But, there are rairly any site reactions and the injection usually has no pain. I have been on Avonex for almost 10 years and it works very well for me, no exacerbations.
          Bill
          Scuba, true meaning of Life! USS Wilkes Barre 91, USS Monitor 96, 97, 99 .. Andrea Doria 96, 98 .. San Francisco Maru 09

          Comment


            #6
            I was just diagnosed with RRMS yesterday. It has taken me 4 years and 3 doctors before I could get an answer. I had numbness in my right hand, they dis carpal tunnel surgery 4 years ago with no relief, then a neuro dr felt like I had MS, but I did not like the way he treated me, as if I was not a person, then a judge that my husband worked with told me to go to this dr who was a specialist in MS. I did and found him to be dismissing saying I had carpal tunnel. This went on for another year and half, after he did the test for carpal tunnel, it showed that the problem was not carpal tunnel. I became very upset that no one would listen to me about this. My husband and I changed family doctors because we felt that we needed new eyes on some medical issues. He sent me to this new neuro and I loved him, so nice answered all our questions. He did MRI and was concerned and then did the lumbar puncture and eye test and all was postive. Now I am faced with what drug theapy to take. I am hoping reading some of these threads will help me make my decision.

            Comment


              #7
              thanks for the responses...

              Thank you so much to all who responded. Just reading the from others who have "been there, done that" is very helpful. I started on the Avonex last night. I am terrified of needles, but this wasn't as bad as I thought. I think I can handle it once a week. It is now 9 hours later and I don't feel awful - maybe I slept through the worst of it. We'll see how the day progresses...

              One thing I forgot to mention - my brain MRI was clear. It is my cervical spine that shows the activity. My doc said people with c-spine flare-ups tend to take longer to recover. Anyone have that experience? Every once in a while, I'll get a tiny lessening of the tingling/numbness and think my hand is starting to return...and then it backslides again. Trying to be patient, but I don't think I was ever good at that lesson as a kid. I think this will be a lesson in all ways for me.

              Comment


                #8
                Rebif. You take it 3x/wk and the needle is short. My neuro said there isn't a huge difference between the different meds anyway.

                Comment


                  #9
                  Hi, Sbryan,

                  I am on Avonex and have been on it for a year now since my diagnosis. I have no lesions in my brain, but two on my cervical spinal cord. I have the numbness/tingling in my hands and sometimes in my feet. Mostly in my legs I get these "hot spots". Almost like a sunburn without the sun. It's not painful to touch or anything, just a hot feeling. I sometimes get it in my arms, too. I get weak on my left side sometimes. I keep saying sometimes, because it comes and goes. I guess that's the nature of MS, as I am learning.

                  When I was first diagnosed, I had all these symptoms. They have gotten better, but haven't gone away. I no longer (knock on wood!) have vertigo or L'Hermite's sign (but it's still there a tiny bit).

                  Heat seems to aggravate my symptoms, but I mainly feel it all when I am tired or particularly stressed about something. I can usually deal with the heat pretty well.

                  I just had my yearly MRI (follow up since diagnosis MRI) in the end of March, and I had no new lesions or active lesions. However, they only did an MRI of my brain, not my neck. They told me I would know any new lesions in my spinal cord before they would show up on an MRI. I'm nervous about that, though! I still would've liked to have seen whether the lesions that are there are smaller or still active. But the doctor was happy and said to keep doing what I am doing.

                  I guess what I am saying in my rather long post is that yes, have patience (something I am not good with either!). I'm still learning about all this after a year. I know I could have things a lot worse, so I am thankful to be as healthy as I am. Symptoms will come and go, and somedays you may feel better than others. My doctor told me not to worry unless it's a NEW symptom, and it lasts over 24 hours.

                  Even if I start tingling in a new area, tingling is not a new symptom...I've had that since the beginning. I guess I have to just keep telling myself that! lol.

                  Hang in there!

                  Comment


                    #10
                    Thanks, Momoffour -
                    I don't seem to read about many people that have the spinal issue so it nice (figuratively speaking) to find folks that share that symptom.

                    I too am experiencing the L'Hermite's sign. Have it a lot right now but hope it will go away. Right now, I feel like a pin cushion. On Day 3 of ACTH and last night took my 2nd Avonex shot. The good news (I guess) is that I was able to get an earlier appt with one of the top docs in the area (originally couldn't get in until Oct) so I see her next week for a 2nd opinion. I still feel so conflicted over what is the "right" med to be taking...all I do is read the internet to see different opinions. Now I'm reading stuff about LDN and thinking - why not that? Can be overwhelming!

                    I think I'd feel the same the same as you re: spinal MRI - if it really starts to bug you, I'd push for it, if nothing else, your own peace of mind.

                    Thanks for the reminder to be patient - I'm doing my best - and find that I am starting to adapt to the numb/tingling hand. I wish I didn't have to, but I also know that others have it far worse so I should be grateful.

                    Keep in touch - I find the encouraging words from others to be helpful. I hope I can provide the same!

                    Comment

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