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Undiagnosed and frustrated

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    Undiagnosed and frustrated

    This July I noticed my thumbs felt weak. It was more noticeable on my left hand. I thought maybe it was carpal tunnel from holding my ipad. Went to an orthopedist and he said no and referred me to neurology.

    I had a three month wait for my appointment. I soon noticed problems with the fine motor of my left hand. When picking up small items like peanuts it just didn't "feel right". The way I described it was it was like the signal didn't get from my brain to my hand correctly.*

    I started noticing an "internal tremor" feeling in my arms. Then one day while taking a drink I noticed tremor in my upper lip/mouth. That really got my attention. I also had some days where I had what felt like a numb spot on my tongue and dry mouth. I went to my gp and she did blood work. She did a CBC and also tested for RA, Sjogrens, ANA, B12. My sedimentation rate was 33 so she sent me to a rheumatologist. The rheumatologist did more blood work but thought it was neurological. Finally saw a neuro who did a physical exam and said the only bad thing was that I had a positive Hoffman's sign. He ordered a neck mri and emg.

    By this time I had visible tremors and buzzing feeling (have even felt it in my teeth a few times!) Some days were worse than others. One easy way to demonstrate my tremor was to turn my arm like I was pouring pop in a glass. Right after my neuro appnt I developed weakness and tremor in my legs along with buzzing. I forgot to mention widespread muscle twitching. I started to have a lot of fatigue. I would have good and bad days.

    My neck mri and emg were normal. My neuro wanted me to return in 3 months. Today my symptoms have progrssed to: crippling fatigue (missing work/napping at work etc), intermitant tremor in arms and legs, numb hands, intermittant nerve pain (and burning) in hands and feet, achiness, sharp shooting excruciating pains through my chest (just a few times), electric shock feeling in my front teeth with cold drinks, lots of muscle twitching all over, cramping in hands, visible finger twitching, aching in face, ear pain, heartburn, headache, restless leg, insomnia.

    History of: bad migraines, back was out a few years ago- several weeks of severe pain and spasms, used to get charlie horse type cramps on the backs of my arms and down my sides (very painful), sharp pains that made me think I had gallstones, history of diarrhea, two times I've had what I would call heat exhaustion in the summer, cat scratch fever as a child.

    This fatigue is disabling and I'd love to get to the bottom of all this!

    #2
    Forgot to mention I've a few bouts with vertigo in the last ten years or so. Also I think I forgot to mention tingling in hands and feet along with the numbness.

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      #3
      Very sorry you are feeling this way and feel the need to be here.

      To investigate ms properly you need a brain mri, and possibly an eye exam, possibly a lumbar puncture, possibly evoked potentials, and a lot of blood tests to look for things that are similar to ms.

      A second opinion, from an ms specialist neurologist would be ideal. A brain mri might tell you enough. Your gp might be helpful on where to go from here.

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        #4
        I'm sorry you're going through all this. It's so frustrating to have such debilitating symptoms and not have an answer for it.

        I would keep track of your symptoms. You don't have to keep an incredibly detailed log, but just noting what your bad days vs good days are like and how frequently they happen is helpful. I just went through the same thing (all my testing was clear and just had a 3 month check in with the neuro) and while it's hard not having answers, things will come to light at some point. I hope that's sooner for you than later.

        If you feel that you can't wait the three months, perhaps call your neuro's office to go in sooner or just to chat with them on the phone to discuss what's going on?

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          #5
          An update:
          I had a brain mri with contrast and got the results today. My neuro said no signs of MS. But, he did tell me I had a low-lying cerebellum but he didn't think it was causing my problems. I read about this and realized this could be a chiari malformation. It sure sounds like it could cause my symptoms. I also got the results of some blood work. I have low vitamin D (13) and low ferritin (stored iron) at a level of 4. I've read that that level is dangerously low.

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            #6
            Yes both levels are low and are something you should discuss with your family doctor as they can prescribe replacements. You should start feeling better when they level off. About the Chiari 1 malformation, that is something you should discuss with your neuro as that is a dangerous condition.

            Take care
            Lisa
            Disabled RN with MS for 14 years
            SPMS EDSS 7.5 Wheelchair (but a racing one)
            Tysabri

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