How do you best advocate for yourself?

Hello- I am very new to this so I will attempt to be brief but it won’t be. 8 year ago I believe I had my first major “flare” that was misdiagnosed. I returned from a vacation (where I didn’t feel well the entire time, it was in Hawaii) and I was “dizzy” hold onto the walls or anything to be able to walk., everything was moving, not “spinning” but moving, the floor the walls everything. It did not go away and I ended up in the ER, MRI done (no contrast) sent to ENT, full vestibular testing to confirm it was not an inner ear issue etc. They landed on MdDS, basically I always feel like I am walking in a bouncy house or on a boat, they said it would improve, gave balance exercises, recommendations for things to avoid etc, but it never went away. I rate it these days most of the time I am at a 2-3, but if I am overtired, consume alcohol, don’t follow a very strict schedule and listen to my body it gets nasty again.

Over the last 8 years many things have popped up that I have dismissed as nothing, but I am to the point where I cannot ignore the growing list any longer. So run down of some of the strange things, the balls and base of my feet started going numb, more so on the left ~3 years ago, my hands and feet are always cold, if exposed to winter element even for a short time the pain is something that I don’t know how to describe. I cannot wash dishes if I don’t make the water because it feels scalding. Same with heat, if it is too hot outside I am shot in a short period of time, and sweat pours down my body. Hot bath/shower and i need to be careful walking when I get out. I cannot remember anything. There are post it notes all over my house and I carry a calendar that I write in or I will not remember. I constantly say to myself throughout the day “what was I just going to do” I can usually get it back but it takes a bit. I get off the phone and cannot remember what we just talked about, I can’t count how many times in a day I walk into a room for something and have no idea why I am there.

Over stimulation knocks me on my butt, sometimes for days (I thought I was just an introvert), loud busy situations are a nightmare that I avoid at all costs. I workout A LOT, and I have to take a 45min-2 hour nap afterwards. This fall my vision was not right, I thought I needed new contacts because things were just blurry/hazy in my left eye, but nothing changed in my prescription, I got new contacts and no improvement. I take ibuprofen like it is candy for headaches, and do get migraines occasionally, I have been beating myself up that I am just lazy and need to suck it up, but I cannot keep up with the level of activity of everyone around me. By 2-3 I am done.

My kids have joked for years that I hear everything, it is like I have super sensitive senses (good when they are doing something wrong) certain smells make me sick, and loud just makes every inch of my body react, jumpy/startled like being in a constant state of suspense. I don’t remember the last time I was able to just fall asleep and stay that way and was put on some sleep med 10 years ago, but the side affects were not worth the sleep. So now I meditate and use lavender oil. I have never had good handwriting, but my hands shake some and my fine motor skills appear to not up be to par, to the point that I can’t even read my own writing. My friends and family have been telling that my speech has gotten softer, and I am mumbling more, they ask me what did you say a lot. If I am sitting, my right leg bounces really fast and I am not doing it (this has been going on for 20 years) my digestive system does not function properly with out help, and I have had bladder issues since I was a teen.

I am 39 now. I don’t have a lot of pain, but I am tight everywhere, again just dismissed that it is just the way I am. Recently developed a pain that is unlike anything I can explain or have ever felt before in my life, it is in my rectal area (no hemorrhoids or other issues) prior to that had twitching/pulsating feeling in the same area, and in different muscles primarily on the left side of my body, leg, arms, torso, very random. I have been depressed before, I am not currently depressed. I do not have anxiety, other than general worry about my kids, and obviously these things have me concerned. Fall of 2016 I developed shingles, and since then I have had 2 more bouts of them. And everything is getting worse. I went to see my GM and explained all of this randomness to here, she ran every lab under the sun and everything came back normal except my Vit D was 1 point above being low. The response was that patients can be frustrated when everything comes back normal, but I should try to improve my health habits, and things like this are usually just related to depression and anxiety, which I don’t disagree with, but I can’t do much more to live a healthy lifestyle, I am not perfect but I was a personal trainer for years and it is the life that I am accustomed to living and I know how I feel when I stray too far.

As I said before, currently I am not depressed. I am frustrated. Because I am sick and tired of feeling like crap most days, and I know my body. Something is wrong, I don’t know what it is, and I am certain I forgot many things writing this, but it seems that even though my labs are normal, based on what I am trying to relay that this should be looked into further. So I found all of you. To ask you what you would do if you were me. I want to ask for additional work up, and I usually stand up for myself very well. But everything is so wide spread I understand that it could be any number of things. And with her response, it kind of makes me feel like I am over reacting. Deep down I know I am not, I know my body, and this is not how people normally feel. I rarely make a trip to the doctor for anything. I am not a frequent flyer that goes in at the first sneeze, or really anything, except the big stuff when I know that something isn’t right. So I am asking for help, what do you think? I know that this is not a place to get a diagnosis, but if you were me what would your next step be? And does any of this sound much too familiar to you? I apologize for the length and the things I forgot that I will probably add later, and thank you for any insight you can give me.


Community Answers
  • Kelly McNamara moderator
    8 months ago

    Hi Emily,

    Thanks for sharing with us!!! Many in the community have shared their battles in getting a diagnosis. Unfortunately, it can be only too common to receive a misdiagnosis or no diagnosis at all. Getting multiple second and third opinions can sometimes be so important. Two of our authors have written about the importance of advocating for yourself. So, I figured I’d share in case they might give you some ideas: https://multiplesclerosis.net/living-with-ms/knowledge-is-power-being-your-own-advocate/ and https://multiplesclerosis.net/living-with-ms/doctors-reminder-advocate-yourself/. Wish you the very best as you navigate this all! Keep us updated on everything if you can! – Kelly, MultipleSclerosis.net Team Member

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