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Dismissed and unsure


I’m not sure I belong here but, I need to vent I guess. I had my third child a few months ago. During my last trimester I began experiencing symptoms that no one could explain. Every test came back negative. Nurses and doctors dismissed me. I just dealt with it and they went away. For the past several months I’ve started experiencing different issues again... my doctors once again are dismissing me. I had to request a referral to a neurologist and the doctor didn’t even want to do it. She only agreed to it because I’ve had facial paralysis for over 2 years. The neurologist scheduled me for September. I feel crazy... because no one believes that something is going wrong with me. I have no idea if it’s MS.. but I know something is wrong.

My entire body feels like it’s falling apart. My eyes feel weird, kind of blurry or like I have to blink or adjust them a lot. my hands feel clumsy, my arms get tired very easily. Things like writing and holding my phone feel strange. I feel like something is crawling on my legs. I’ve felt wetness on my leg that wasn’t there. I can’t remember words or some things that happened the day before. I can’t remember how to spell things and I lose my train of thought a lot. My mouth hurts. My tongue feels sore. I have joint pain. I am constipated and have horrific, excessive gas. I have a pelvic prolapse. I have pain that wraps around the right side and back of my lower abdomen. I’ve had muscle pain in my back (like it’s locked up). My scalp hurts. I get headaches every day. My skull hurts at the base of my neck. My joints pop. When something touches my feet, it feels exaggerated. Water on my hands hurts. My hands and the roof of my mouth have experienced a burning sensation. I always feel king of dizzy, like mild vertigo. I have daily nausea. I’ve bumped into things or fallen into things more. I feel overwhelmed by sounds. Like my senses become overloaded.

I’ve been told I’m just stressed. I only feel stressed because I always feel bad.. I’ve been changing my diet and I’ve scheduled to see 5 different doctors. My lab work has all been “perfect”. I have to tell myself every day that I’m not crazy.. but I’m starting to think maybe I am.

Thank you for allowing me to vent.

  1. Hi @Makjak32. You must be so overwhelmed and frustrated. The facial paralysis alone should have been enough to get a referral to a neurologist. I hope you are considering finding a new primary care doctor, someone who will be a partner in your care. You are not crazy. Your symptoms are all very common in people with MS and legitimate reasons for concern. There are also several other health conditions that mimic MS, many of which your primary care doctor could have and should have ruled out. Here is a list: Have you asked to be placed on the neurologist's cancelation list? That might get you in a little sooner, though September will be here before you know it. For now, you can help the neurologist figure out what is going on by keeping a journal of your symptoms and bringing that journal to your first appointment. Whether it is MS or another health condition, something is happening that needs to be address. Again, you are not crazy. Please keep us posted if you feel comfortable doing so and vent here any time. Thinking of you! - Lori (Team Member)

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