Maybe I don’t want to know

   Hi everyone. I hope all is going well!


Today I went to meet my new neurologist to get a third opinion. She is a really good doctor, I liked her a lot. She agreed with my neurologist at MGH. She said, yes I clearly have multiple sclerosis, but that is not what’s causing my symptoms right now.
    So there’s something else wrong and nobody can figure it out. I feel unless because I’ve studied and learned so much and MS and all the signs, symptoms, reading mri’s, differential diagnosis. I can think of a couple but I’m not the doctor. They both said the same thing, that what is wrong with me isn’t just combined into one or two diseases or disorders there’s a whole lot going on.
      I’m stumped!  So I guess I am now a research project. The question is, do I want to be? I thought when I got the multiple sclerosis diagnosis that it would be the end of the search and that I was right the whole time.
     I was right but not completely. Here’s what I’ve been diagnosed with so far throughout life:
– fibromyalgia
– MS
-Degenerative disc disease
-Spinal stenosis
– narcolepsy
-Irritable bowel syndrome (since I was in high school, I’ve been pooping blood very often. ) shhh
-Anxiety/ panic attacks
-Slipped, bulging, herniated discs
-Inflamed lymph nodes, stop going on after two tries of antibiotics
– my vision changed a lot, especially my right eye since I had optic neuritis, I swear I’m going deaf
– I think myoclonus, which is similar to a seizure  but I guess it’s not one. I’ll be wide awake in bed watching T.V. not sleeping, and my body will like have tremors I can’t control my body movements, I’m fully alert, but I can speak at all! Sometimes it’s my head, my whole body and lasts for about 30 minutes -1 hour. I have my boyfriend laying next to me and I can’t even say call 911, nothing! It’s scary as hell!

  Those are some things that I have going on right now. MGH wants to study and research me, because I’m so complex, such a rare case and they want me to get a team of doctors. I believe I already have one there. I have a neuropthmologist, 2 MS neurologists, a comprehensive neurologist, a sleep Dr. Neurologist.
    I’m not angry more confused. I feel like I’m starting over again just when I thought I was good. I’m still deciding if I want to pursue this, and just see what happens or keep going to try and figure it out.
    Sorry it’s late,
I’ll post more soon,
Love you all,




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