30yrs old just had baby and 3months later got sick. Now in a wheelchair, seizures daily and no answe

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Hi my name is Tiffany. I recently gave birth to my son in December. 3 months later on March 2nd I went to the ER because I couldn't breathe. Once I arrived I went into a catatonic state for the next three days I did not sleep I was having weird seizures, I did not know who I was or where I was I spoke complete gibberish and was experiencing Visual and auditory hallucinations. I do not remember any of this. When I came to three days later I had no idea what had happened or why I was still in the hospital I thought I had just woken up from a nap. I was released two days after regaining full consciousness and was stable. Also during the three days I was experiencing encephalopathy my heart rate was in the low 40s and multiple times dropped to 30 beats per minute. Those three days were very Touch and Go the doctors did not think I was going to make it. They ran every test imaginable and everything came out fine except having a very high white blood cell count. after being released from the hospital I began to start feeling better. But then the Friday after I was released I had a major seizure. We went straight to the ER. They stabilized me then released me. I began experiencing seizures on a daily basis. Also after leaving the hospital from my seizure I began losing the ability to lift and move my right foot. Then suddenly I began having strange episodes that seemed like seizures but weren't. They only affect the right side of my body. It starts in my neck the muscle clenches and contorts. My jaw drops my neck throws itself back and I am not able to speak. It begins to move down my right arm and completely clenches my right hand and contorts my arm into painful awkward positions it also affects my right leg forcing it into a plank position and forcing my right foot to curl into my body. Sometimes it is followed buy a seizure where my entire body shakes and convulses until I go limp and lose consciousness. This only lasts for a couple of minutes. Once I regain consciousness I cannot get my jaw arm or any side of my right side to work. Every muscle is clenched and I am stuck in a very painful awkward position. The scariest part is that when I try to speak all that comes out is gibberish. I have seen so many doctors and have gotten zero answers. I am now in a wheelchair and unable to care for myself or my baby without help. I don't know what to do anymore everything is getting worse no one seems to know what is wrong. But this all started with the encephalopathy in March. Has anyone heard of these types of episodes? Or does anyone no what my symptoms might be caused by? I cannot think straight, my memory is awful, I have trouble speaking, and cannot use my righr foot and the same is happening to my hand so i am now stuck in a wheelchair. Please help, im so desperate for answers. ALS was mentioned but it does not caise seizures or the strange episodes i have. If u need more info just ask 😉 i am losing this battle because i dont know what im fighting.

2 likes, 6 replies

6 Replies

  • Posted

    I hope you find an answer.  Have you seen a neurologist?  That is where I would start.  Best of luck.  My heart goes out to you, 😎
  • Posted

    As KMRC said go see a Neurologist Tiffy.

    You have to tell them you want answers and do not be fobbed off .

    Good luck and I hope you can enjoy your life and baby soon.   

    Regards  xx

    • Posted

      I have seen 2 neurologist but they both specialize in ALS, since thats what my PCP has decided I have. I disagree and want more testing and opinions before we settle on such a permanent diagnosis. I will be seeing a neurologist on the 14th that deals with a much broader scope of Neuro disorders. Hoping to get some answers. Thanks for the response. 😉
  • Posted

    Hi Tiffyann ,I am sorry to hear about your fate,but unfortunately I have never had of such symptoms before.I was wondering if you are a christian,the only way left for you now is to pray and believe God for a miracle.
  • Posted

    Wow Tiffany we R Ui the same boat.

    Keep us informed.

    Will write more later.

  • Posted

    Wow Tiffany we R in the same boat.

    Keep us informed.

    Will write more later.

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