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    progression of symptoms or long relapse

    I am a 33 year old female, still in "limboland", who started having symptoms about 2 months after the birth of my child. The symptoms started in July with tingling in my feet and numbness in my fingertips.
    Then in August I started having issues with bladder frequency, and also began having numbness, tingling, and crawly sensations on my face, mostly around my eyes.

    By October all these symptoms continued and I also began having what I guess is spasticity and muscle cramps in my legs, and some muscle cramps/pain in my arms which comes and goes (good days and bad days).

    I still have tingling in my feet that is constant all day long,bladder problems, and the paresthesia on my face which is also daily and is driving me crazy. Over the past 2 weeks I've also developed painful pins and needles in my right hand and a pain in my ribs that is daily.
    It seems like every couple weeks I develop a new pain, and none of the symptoms over the last 6 months have yet to "remit"

    Does this sound like a progression of symptoms (leading to possible ppms?) or multiple/ongoing relapse?

    I followed up again with my MS specialist yesterday and was shocked when the results of my mri last week (brain, and spine on a 1.5T machine) came up clear. He said he has patients with one third of my symptoms who have tons of lesions. I read that ppms can also be more difficult to diagnose b/c of lack of / fewer lesions on mri?

    I had tons of blood work and they ruled out lyme, lupus, b-12 and all that, had nerve conduction which came back normal, and saw a urologist who found no reason for my bladder problems.

    Is it even possible after a symptom is daily for 5-6 months that it could still remit, or are all these symptoms likely here to stay?

    I guess the only thing I can do now is wait 6 more months and try to have another mri on a 3t, any other suggestions?
    I am very reluctant to have the lumbar puncture b/c the dr thinks it's unlikely to be positive if my mri is negative and I am terrified of going thru that after a horrible epidural experience, but my doctor is willing to order one if I decide to.

    #2
    Symptoms can get better over 2 years or even more. Also, whether you've slept well, are stressed, depressed or anxious makes a huge, huge difference.

    If you are anxious, your symptoms will be worse (feel). You sound anxious. Every newly diagnosed person who doesn't spring back to normal after steroids worries they're progressive. But you still need time to heal and LOTS of rest. Stay in bed all weekend if you can. You can tell your Doctor, however, that there isn't necessarily a correlation of MRI activity to disability or symptoms. But he may know that and is only trying to relax you.

    I suspect you're anxious, which is understandable. Want a test? Get some Xanax and see if your symptoms feel better

    Comment


      #3
      Get the LP

      The LP is really not that bad. They use an xray machine when they do it to see where they are going in your spine. It doesn't even hurt, just pressure, ok maybe a pinprick, but they give you numbing cream.
      Wouldn't you rather have all the tests laid out for the dr? If you dont get that LP, there is a chance you have oligonical bands, and that could help your dr diagnose you.

      Not knowing what the hell is going on with your body can be stressful! I always treat myself to a Valium when I am getting an MRI. I don't know if you can take it for an LP, but it really helps keep me from freaking out.
      You do sound stressed- this is a great place for info. And whatever you decide to do, good luck, you can always come here to vent and ask questions.
      ~seeuinct (Connecticut)
      Dx the first time: 10/25/11
      Avonex 1/12-10/12
      Revaluation of Dx 10/12
      Rediagnosis 7/14

      Comment


        #4
        Hi, hope you're feeling much better by now and that it was just a flare up of symptoms that came and went. Thankfully, many times you can have a few weeks of symptoms that fade away.

        Sending hugs across the miles and thinking of you today.

        ~ Vicki
        "Get out of your head and into your life!"
        Psalms 46:1 - "God is my refuge and my strength, an everpresent help in times of trouble."

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          #5
          Hi Keysgirl....

          It is all a guessing game in my opinion; and depends greatly on your doc.

          I am dx RRMS, but I have never had a remission. I have about 15 small brain lesions that are non specfic. I had a neg LP. I do have low B12, one of my evoked potential was abnormal. Most all of my reflexes were abnormal....positive babinski, positive hoffmans, absent abdominal reflex, positive rombergs sign, ataxia....and I had ON dx by an opthalmologist.

          So, even though my brain lesions are not typical for MS, all my symptoms and clinical exam pointed to MS. Everything else was ruled out.

          Hoping you find answers soon.
          DX: RRMS Jan 2010 -- LDN: Mar 2010-Dec 2010, Tysabri: Feb 2011 reaction, Gilenya: Aug 2011 reaction, Copaxone: Oct 2011 reaction, Tecfidera: May 2013 reaction

          Comment


            #6
            Thanks for the replies. I wish that any of my symptoms would come on just for "a few weeks" and then resolve but so far any new symptom that has come on, I still have.
            I guess I was just wondering if a flare could last five months or if something else is going on. The constant tingling, pressure, and pains in my face cover the entire upper portion of my face...both eyes, forehead, nose, and cheeks.....and never lets up day or night. The first few months it would come on in the afternoon or evening, but the last month or so it's become constant.
            The buzzing in my hands and feet has also become constant, but that is easily overshadowed and ignored when both my eyes and face is buzzing... Makes me crazy. not to mention the horrible stabbing pains in my cheeks on top of that.
            Thought I could deal with it when I was hopeful that it was a flare and would resolve, but now I'm wondering if I should talk to my dr about any drugs that could help if it looks like this is might be permanent.
            I'm currently taking zanaflex for the painful spasticity in my legs which has gotten worse over the last 2 months as well.
            I wish it was just the anxiety making my symptoms worse, but it's probably the worsening symptoms that is fueling the anxiety, at least that's what I think

            Comment


              #7
              to answer your question, yes.....a flare can last 5 months.

              Have you had an MRI of your cervical spinal cord? and I would high recommend a 3T machine. Most insurance companies will pay for another MRI before 6 months if you are have new symptoms.

              I don't think your symptoms are from anxiety. I have went constantly downhill, with no remissions for 2 years now.

              Praying that you feel better soon.
              DX: RRMS Jan 2010 -- LDN: Mar 2010-Dec 2010, Tysabri: Feb 2011 reaction, Gilenya: Aug 2011 reaction, Copaxone: Oct 2011 reaction, Tecfidera: May 2013 reaction

              Comment


                #8
                Some of my symptoms came on last summer and took until this summer to finally fade out completely. After a bout of the flu and a flu vaccine, they're back, but not as noticeable or widespread as the first time around. So yes, they can go away. I've not had any treatment (except a course of oral steroids for a few months for blurred vision) or diagnosis either. But I've tried a lot of alternative treatments and some of them I think are helping.

                I have no MRI lesions but many symptoms.
                I do not have MS. I have Whatchamacallit; and all of the symptoms are mirages.

                Comment


                  #9
                  Hi Keysgirl,
                  I have all of the same symptoms; numbness and in hands and feet, buzzing in hands and feet, crawly sensation in face, and spasticity. Spasticity started in2008, the rest started in 2009 and I never remitted. I have many lesions on my c-spine and t-spine and a couple on the brain. My doc told me i was progressive relapsing. I'm taking gabapentin which is not doing much for me now.
                  Hope you feel better.
                  "Irrespective of what happened yesterday or last year, and what may or may not happen tomorrow, the present moment is where you are-always!"
                  Richard Carlson, PH.D.

                  Comment


                    #10
                    Originally posted by apple19 View Post
                    Hi Keysgirl,
                    I have all of the same symptoms; numbness and in hands and feet, buzzing in hands and feet, crawly sensation in face, and spasticity. Spasticity started in 2008, the rest started in 2009 and I never remitted. .
                    Me too. Late in the day, I'm always swatting imaginary flies off my face. Tingling in hands and feet...

                    But two things: 1) There is a tremendous difference if I've slept well. and 2) My spasticity got worse last year but it's better now. I believe it's better from exercise and yoga.

                    seeuinct - you're right about the lumbar puncture. I know someone who put off DX for a long time because she didn't want a LP. It's nothing if done with the machine, as you say.

                    keysgirl: Do some reading about anxiety. You'll find that in the mind, we completely mix up emotions and thoughts and can't tell which causes which until we train our minds. Get a good book on Cognitive Behavioral Therapy. Seriously.

                    Comment


                      #11
                      Does anyone have a good yoga website for beginners? My dr. recommended this but I have yet to do it. Too fatigued to go to the gym, but need the will power to do something/ P>S> I get plenty of rest!

                      Comment


                        #12
                        I never heard of symptons fading after two years so i have hope

                        Comment


                          #13
                          If your central nervous system is inflamed, you can have symptoms come and go for a long time. The trick is to bring down the inflammation with drugs, exercise and diet.

                          Do yourself a favor and look at this website. http://www.overcomingmultiplescleros...gram-Overview/

                          There is ample evidence that diet, exercise and meditation help a lot.

                          As for Yoga, it's the most amazing thing I've ever done. I like yogatic, but you should really go to the YMCA to learn. Be careful of the "Hot Yoga" classes where they teach a kind of no pain, no gain yoga. That's not Yoga IMHO. No stretch should ever, ever hurt. You should feel it, but it shouldn't be painful. You may experience temporary stiffness the next day when you start, but don't force any stretch. And try to keep your back straight and move gracefully, e.g. when you put your arm down, do it with flourish and grace. If possible, watch yourself in the mirror.

                          http://www.youtube.com/watch?list=SP...id=H3vLZqPZxZE

                          Back to diet, if you go on the program on the website above, you can see symptoms abate. If they do not abate, meditation is very useful at the neuron level.

                          http://www.amazon.com/Mindfulness-Me...5793218&sr=8-1

                          These are all precious jewels. Try them all. You may find some relief and ways of fighting.

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