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    New here and undiagnosed with all the symptoms?

    Hi! I am new here. Been reading your posts for a while but this is my first post. I don't know where to start. I am a 55 (56 in Sept) and started having some weird things going on over the past few years physically. I have been diagnosed about 4 yrs ago with fibromyalgia and sicca syndrome. I have also had these "flares" of inflammation in my body where my joints will swell, have tennis elbow in both arms treated with injections, bursitis in hip and knees, plantar fasciitis and Morton's neuromas in both feet treated with injections.

    Last year I really began to have some serious concentration/memory problems. Couldn't recall names and phone numbers I used all the time. Lose train of thought in mid sentence, etc. Saw a neurologist and had MRI. He said it was ok. I also have had 3 surgeries on my neck for disk ruptures and have a plate in there. Sorry if this doesn't flow well, there is so much information to get out.

    This February I started having lots of swelling in my feet and hands and real issues with heat intolerance. My fingers and feet have started to tingle with heat. I am also having numbness at times in my toes and the right side of my face has been buzzing at times with droop to eye and slurred speech that friends have noticed. Sometimes I have dizziness and balance issues with this. I also have numbness (pardon me guys) on the labia on right side only. I have sensation of things crawling on me and biting me and itching. The heat always brings on the tingling in my hands. I have decreased sensation in my right arm. I saw the neurologist again and he did another MRI and told me it was ok, but if I need him to call. Well, I requested a copy of his notes and copy of MRI report and EMG studies. I need to understand what the report is saying, as it mentions "white matter disease" and some other things that he never talked to me about. I also have terrible fatigue with this and sometimes just really drag around. My vision had been worsening and having more blurriness and one time last summer I was on a trip and had the TV on in the middle of the night. I woke up and looked at the screen and could not see!! It was the most blurry its ever been. I went back to sleep and it was ok the next day. But, eye doc said I had some cataracts and so in February/March I had bilateral cataract removal and implanted permanent progressive lens.

    These tingling numbness things are all over the map. Some times its worse than others. Yesterday it returned with numbness in my bottom lip. Today I have had buzzing on right side of face and ear and a feeling of buzzing on my left shoulder blade that comes and goes. Feels like a semi mild electric current. I also have numbness under my left heel when walking. My hands are a bit fumbly. I called the neurologists office and find out, he has left the practice. Not only that, he is not even practicing medicine anymore. So, I am hoping that another doc in the practice will take my chart and help me. I told the girl on the phone my current symptoms. Its very hot here this summer and heat nearly guarantees symptoms... even doing housework, etc if I get warm, I tingle. I had asked this doc to do MRI on neck and spine and he didn't do it. The report here said EMG revealed evidence of chronic denervation in the lower cervical C7-8 region. MRI with/without contrast says FLAIR and T@ weighted images demonstrated limited scattered focal areas increased signal including the right temporal, parietal and high right frontal regions. Two additional more subtle defects are present in the left frontal region. None of these demonstrate corresponding abnormalities on T1 weighted imaging.

    Impression states: Very limited white matter disease is present predominately near gray/white junctions and not periventricular. He says had talk with me about differential diagnosis to include, small fiber neuropathy, CNS disorders such as MS (already had 2 normal MRI's of brain), autoimmune disorder, myopathy, etc. I have had one episode at night when I woke up 3 different times and couldn't move... haven't had that again. Also in that same time frame I had 2 episodes where I began to wet myself in my sleep. I do not have daytime incontinence. There are times it feels like my right eye EYEBALL is twitching, or moving horizontally back and forth. I apologize if this sounds all over the map, but I am sure someone here can help me with this. I had 2 distant relatives.....a great grandfather...they said he was "cripple". I don't know what from and an uncle on other side of family with similar issue but I don't know what from. Can someone here help me sort out any of this?? Thank you so much!! Lyn in SC

    ****post broken into paragraphs for easier reading****

    #2
    PS:

    I fogot to mention that I also have Vitamin D deficiency. I have seen many people talk about that related to MS. I apologize for my rambling introductory post. I am having symptoms in new areas today and more tingling than usual. It didn't help me to find out that the neurologist I saw who did the MRI's etc. left practicing medicine altogether and I didn't know it. I have been sitting here waiting for a referral to a teaching hospital here for further evaluation, which is what he told me last.....several weeks ago. I had no idea he was exiting medicine.......he should have told me that!! Wow. That has caused me to be even more anxious about this. I have no doctor now. Does anyone know what the MRI interpretation meant? Thank you, Lyn

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      #3
      Hello steelmagnolia,

      It is important to have a neurologist look at your MRI and read the report, he/she is better qualified to interpret the findings then those of us here.

      I hope you find a new doctor soon so you can get some answers...Best wishes
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

      Comment


        #4
        Hello Lyn

        Sorry for all you're going through right now

        Hopefully you will find a new neuro real soon to help sort out the causes of your symptoms, and interpret your MRI.

        So glad you found us here at MS World. There is great support here, and lot's of interesting information and sharing.

        Let us know what your new neuro says. Looking forward to more of your posts. Best wishes to you

        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


          #5
          Thank you, KoKo

          Hi, Thank you for helping with my rambling post!! I don't usually post that way.....and thank you also for your welcome and encouragement. Yes, I need to find a new neuro.

          What I would like to know about is the symptoms.....I live in a very hot and humid area....today the heat index is supposed to be up around 110!! I can barely stick my head out the door without tingling, etc. Heat is a main trigger for me and I have read that it is very common in MS. Are there any other conditions that you know of where heat would induce tingling/numbness? I read that putting a patient in hot tub or shower to see if they could reproduce the symptoms used to be used as diagnostic tool before they had MRI. What is your opinion on the symptoms I have listed. Does MS ever involve swelling of the joints or skin issues?

          Thank you,

          Lyn

          Comment


            #6
            Welcome Lynn. If you're diagnosed with sicca syndrome, that is Sjogren's Syndrome and MANY of the symptoms will overlap those of MS. Do you see a rhuemy for the sicca. It is a disease that is way more than dry eyes and dry mouth. Rarely referred to anymore as sicca syndrome. Have you mentioned the symptoms to your rhuemy (assuming you have one). SS is one of the things I have been tested for in my quest for a diagnosis but they keep coming back to the MS. Blessings to you.
            Kim
            Sx probably 10 years Undiagnosed
            Gods grace is sufficient

            Comment


              #7
              Originally posted by steelmagnolia View Post
              I read that putting a patient in hot tub or shower to see if they could reproduce the symptoms used to be used as diagnostic tool before they had MRI. What is your opinion on the symptoms I have listed. Does MS ever involve swelling of the joints or skin issues?
              Lyn
              Hello Lyn,

              Swelling of the joints is usually not seen in MS, there can be swelling such as feet or hands but even with MS other causes need to be ruled out before MS is to blame.

              You are correct: Many years ago people were diagnosed by putting them in a tub of hot water, if they had trouble walking afterwards they were diagnosed with MS...Thank goodness for technology

              Your symptoms might be MS and they might not be MS. It's difficult to know because there are other diseases/disorders which have similar symptoms as those of MS.

              Many with MS are heat intolerant as well as cold intolerant and there are many without MS who are heat/cold intolerant.

              Anytime you are having symptoms which have not been explained it's important to have an open mind and hopefully have a doctor who has an open mind.

              I have seen many people over the years get stuck on what they believe is the cause of their symptoms only to be diagnosed with something completely different.

              I hope this was helpful, if not please feel free to post again...someone will be around to answer
              Diagnosed 1984
              “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

              Comment


                #8
                Originally posted by KimA View Post
                If you're diagnosed with sicca syndrome, that is Sjogren's Syndrome and MANY of the symptoms will overlap those of MS.
                Thanks KimA, I was not aware of sicca being sjogrens.

                Sjogrens can cause neurological symptoms. As KimA mentioned, talk to your Rhuemy about your symptoms and see if some or all are related to your Sjogrens.

                steelmagnolia, if you have not done research on sjogrens here is a URL with information.
                http://www.sjogrens.org/home/about-s...drome/symptoms
                Diagnosed 1984
                “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                Comment


                  #9
                  thank you both

                  Hi Kim and Snoopy,

                  Thank you both for responding to my concerns and questions. I did have a rheumatologist who diagnised me as having fibromyalgia a couple years ago. I don't see him anymore. To him everything I told him about was related to fibromyalgia....even when it wasn't. He would never test for anything. I need a new rheumy and a new neurologist!! This is a vrey frustrating state to be in....with the not knowing. And, it seems to take so long to track it down. I have done much reading up on many of the issues I am facing and kept myself as informed about my conditions as I can. Knowledge is power....they say. This is the first and only message board I have ever joined concerning MS, but I have been a "reader" of many.

                  I requested a call or appointment with one of my former neurologists colleagues... but so far no one has called me back.

                  Blessings back to both of you. I am sure we will be speaking again soon.

                  Lyn

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