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Problems with diagnosis. Help.

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irinar
irinar

Hello everyone, my name is Irina, I am 38 years old female. Never before had I any serious problems with my health. Starting last November I noticed lack of strength and slight pain in the back of my left arm and leg. Short time later my left leg started feeling really cold,( abnormal sensation) from toes up to my knee, I always wanted to put on multiple socks. It seems to be just a feeling of sensation because for a doctor both limbs had the same temperature. I visited my GP and was sent to neurologist. Routine exam did not show anything. MRI with contrast performed on December 27th 2017 did not show any neurological abnormalities. At the end of December another symptom manifested - unregular sometimes rhythmic sometimes not jerks(twitching) of fingers/muscles ( myoclonus) .  As well as feeling of stress and anxiety, depression.

Later it became not only myoclonus of my muscles, but jerking of hands and feet, neck in relaxed condition. At the end of Jenuary I started feeling burning sensations (as I understand parastesis) all over my body - face, back, legs, and after that my skin sensetivity was reduced. In certain areas I felt intense pain a few times and after that those areas became numb. Also I noticed problems with my eye sight, more precisely focusing my eyes, reading from far distance. (what I could read before, I can not now). I went to neurologist with these symptoms again, routine exam did not show any problems, 30 minute EEG was also normal according to a doctor. Neurologist suggested waiting and recommended a psychiatrist, psychiatrist prescribed pills ( escitalopram, mirtazapine), that helped me somewhat with anxiety, but did not address the problem with my symptoms, which are getting worse. Today I have the following symptoms: 1. Regular Burning sensations of different areas of my skin on feet, legs, face. 2. Worsening of vision, focusing of eyes, pressure on the eyes. 3. Pressure in my head, especially forehead and ears (no pain) 4. Myoclonus jekrs, which, I think because of antidepressants subsided, but not completely gone, Yesterday (March 20th) I had an eyeball twitch, but did not record it in time. 5. Tiredness. 6. Much less sweating (for prolonged time). Lime decease test was negative, Vitamins are all normal, overall blood work is normal. I did not have lumbar puncture. Looking at the internet I self diagnosed myself with few degenerative diagnoses, including prions. Do you have any ideas? thank you!

0 likes, 17 replies

17 Replies

  • Tarhealing
    Tarhealing irinar

    Posted

    I had a milder form of GBS which had similar types of symptoms. They think that I had the Miller Fisher variant of GBS because my vision was affected. I had to undergo all kinds of tests to rule out other neurologic problems so that is good that you are getting things checked out. Did anything occur beforehand in November - Flu shot, other vaccines, stomach bug, infection before you had trouble? Was it progressive or ascending? 
    • irinar
      irinar Tarhealing

      Posted

      Thank you for your reply. I had a flushot in November but never had this kind of problems before. And, it seems to me, In October I felt already my leg and arm , I suppose. The feeling was a bit strange but not strange enough to see the doctor. 
    • irinar
      irinar Tarhealing

      Posted

      If you don't mind, can you tell me more about your symptoms and duration? Thank you!

    • Tarhealing
      Tarhealing irinar

      Posted

      I had symptoms following a Tdap vaccine. I had this strange sharp pain behind my eye and this strange feeling of numbness in my face. I thought that it was some kind of eye problem. When my eye was ok,  then I thought it might be some kind of sinus problem. Then I began getting the strange ascending numbness weakness thing that started in my leg and began progressing to my arm. It affected both sides but mainly one. Then more symptoms traveling up my body. Then I got thousands of nerve twitches everywhere, double vision, blurred vision, weird sensations, paresthesias, pain, etc. It was horrible. After so many weeks, I could barely walk and I had so much pain in my legs and weakness as well as this terrible pressure in my head and face. I had so many, many, many tests to rule out all kinds of neuromuscular disorders but earlier on a few providers thought it might be a milder case of GBS. I did get in with PT early and they helped me even though the cause of my problems was still up in the air. Everyone's case can be different but there are some things that follow the same. Some cases are more severe and happen instantly and I've found that other cases are slower and milder. I do know that there is a higher incidence following the flu shot than other vaccines but it's still pretty rare. I think that it's underdiagnosed though. 

    • irinar
      irinar Tarhealing

      Posted

      Thank you very much for your reply! Did it take long? I have troubles sends November.
    • caroline70988
      caroline70988 irinar

      Posted

      Wow strange that I also had it November 2/12 years ago that’s how it started with me to you know your not aloud to have a flue shot again I can’t not aloud .
  • caroline70988
    caroline70988 irinar

    Posted

    Ask for a spinal tab my god thought I was bad . Sorry to hear might be case of Parkinson’s, gbs some thing but spinal tab might get better results cause they did all those test came out great till spinal tab showed just about died these dr don’t no any more . Hugs hun 
    • Tarhealing
      Tarhealing Julez878

      Posted

      I had that leak too and it's rough. I needed the spinal tap though but it was inconclusive. Did they do an mri?

    • caroline70988
      caroline70988 Tarhealing

      Posted

      Can I ask you what you mean about leak in ur spine? Ok how do u know this happens since I had this done my lower back hurts also have lots pain pulse it made bigger hole . My dr had it to but not as bad as me . He’s past age every now and again he says he feels foot has sand paper feeling . Lately  my legs but more thinking to put stockings on to release the situation cause it tightens it to me not to feel that sensation . You guys been dealing with this for years?
    • caroline70988
      caroline70988 Julez878

      Posted

      Wow ok lesions ok that’s why they thought it was ms but 8 years bad doctors that’s crazy I’m so sorry to hear that . My x friend had ms and they were doing some kind of acupuncture in different areas of her body now is that what they are doing for you ? And so after that you had Gillian Barrie and also Lyme ? 
    • caroline70988
      caroline70988 Julez878

      Posted

      Also your very smart about things on these diseases were u a nurse or basically got sick and started reading a lot on these disease ? I just started reading on many of them since yesterday very interesting . And they also later on thought I had ms only I couldn’t even stay awake all I remember in a fog I hear miss ,,,,,, were doing spinal tab in my dreams not really dreaming I was in and out were doing spinal tab now think I said ok past out and felt pain but still out of it . I hate those moments sad part of my life . I’m sure every one else in here to.
  • caroline70988
    caroline70988 irinar

    Posted

    I hope not hun gbs has many of your symptoms like I had many on here so sad just keep pushing cause you need to know. Oi know how it feels to not be feeling good and not knowing .
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