Search Discussions

Main Content

  • bananamalt

    As any of you can attest to, having a diagnosis makes you not feel crazy. It quiets anxiety when weird things happen to your body. A diagnosis gives you a direction to look when you're unsure or need answers. 


    About three years ago I was referred to a neurologist from my GP. My neurologist immediately suspected and solemnly informed me that I most likely had MS. I fit the profile.  They did many tests and diagnosed me with probable MS, then after a year of pregnancy took it away because it did not majorly worsen. I had a third MRI And it showed no change since the second MRI (MS protocol). They told me to not make another appointment unless I had any new incredible symptoms. 


    I asked for a second opinion and the nurse basically shamed me and yelled at me on the phone for suggesting I should see someone else for a second opinion. She told me I couldn't come back to my current local hospital because I couldn't see two neurologists. I spoke to a second nurse who deeply apologized and said that I could of course come back.


    I went to a different, more advanced teaching hospital. The new neurologist said he couldn't say that I don't have MS, because I have multiple lesions/scars on my brain and what we know now of MS is so different than what we used to know. We are also learning to read MRI's in a totally different way. He said I likely have clinically isolated syndrome, which means one flair up that caused damage. I could call him back if I had new symptoms, but he'd check back with me in a year. I called back with a few new small symptoms and after a long wait, he suggested I get an EMG (electromyogram?). I said I'd do it, but haven't moved forward with that testing because it sounded like it may not be completely necessary? It's a painful test. 


    Does my story sound familiar to any of you? I have a feeling that the doctors are just waiting for an obvious sign, because no one knows EXACTLY what's wrong with me. It's very frustrating. It's been three years. 


    Symptoms in order of appearance: 


    1. Facial numbness - left side - constant - worsens with exhaustion, hunger and stress (2013)

    2. Shin numbness/swelling sensation - left side - intermittent -> now constant - worse at end of day (2016)

    3. Fingertips and top of hand/forearm/arm tingling - left side - intermittent - changes when exhausted, hungry, temperature  (2017?)

    4. No pain sensation during natural labor/contractions/braxton hicks/cramps - left side - still no pain for cramping. I only feel abdominal pain on my right side. Including when working out my core. (2018)

    5. Leg gave out while running during a kickball game. I fell hard and scraped up both knees.. I have big scars. - right leg

    6. After two kickball games/rollerblading my right foot began losing ability to flex - foot drop? - right side - 12 hours until i can lift my foot off floor (2019)

    7. Costochondritis - right side - inflammation - given a shot from my GP 

    8. When I lay down I experience almost constant twitching and small muscle spasms. Some are noticeable to other people, many aren't. My arm will twitch, a muscle in my quad will tighten, my right hip will jerk up to my ribs for a brief 1/4 second. This happens when I'm at rest and when trying to fall asleep. 

    8. Finger - right side - weakness. Sometimes feels numb at end. Sometimes twitches or feels unstable. Sometimes I can't lift it more than 30% of its ability. 
    9. Right eye has become either a bit more blurry/sensitive with age, or it's related to the silly symptoms. It often blurs or feels just a bit sore. Or like there is a weird film/pressure. I can usually blink it away. It is occasionally more sensitive and just feels off. When I close my left eye, my right eye just makes the world look weird. Like almost normal, but a little fuzzy with how the light is reflecting.


    Anyway. Hoping that these symptoms check all the right boxes with y'all so I won't feel quite so alone or crazy. I have a one-year-old, three-year-old, and five-year-old and just wish to be the best Mommy possible. 


    Thank you for your time! I appreciate it. :)

  • jasonprestovfd
    It is very frustrating waiting for the diagnosis, I felt like I was loosing my mind during the year it took to get mine.
    I'm not a doctor but it sure sounds to me that you have it. Ive experienced most of what you are describing. See if one of your doctors will give you a prescription for muscle relaxers, I use them at night when the muscle spasms prevent me from being able to sleep. Sometimes the spasms are very painful other day times the muscles just shimmy and shake.
    Also getting a 2nd or 3rd opinion is a great idea. 
    good luck and I hope this helps you.
    keep us posted on how you are doing. 
  • bananamalt
    Hello. Thank you. It's nice to hear that other people experience muscle twitchs/spasms while at rest/night, but I'm sorry that they're painful for you sometimes. I didn't notice mine until I was stuck in an MRI machine for a few hours and began to notice I couldn't completely relax or keep my body 100% still. I noticed I was having weird twitches all over my body, but I wasn't sleepy or falling asleep. So weird! Sometimes it's hard to know what's normal and what's not. Thank you for the response! 
  • maria1
    okay, bananamalt, welcome to our club. You have two probable  diagnosis, what do you want to do? You think you have ms so you can let it go from there. You can read the posts here to see what folks do for the symptoms you have and you can get  scripts if things are uncomfortable. You can take control of your life and work on changing what needs to be changed, diet is a good beginning, and supplements work for most of us. Since your children are very young you will want to be as close to yourself as possible. Learning how to react to stress without agrivating the nerves is the best choice without overheating the nerves. Seeing a therapist may be a good choice for rapid change in thinking. Medical doctors are good for what ails but it is we who make the necessary changes in how we react to things and how we approach things. ms is all in our mind, and our mind controls every part of our body and we control our mind. Delaying doctors visists and the whole medical arena is an opportunity you have. I lived more than twenty five years without a diagnosis and learned to pay attention to my body and delayed the inevitable routines of doctors drugs and tests, and the longer I stayed out of that system of annoying things the better off I was, especially the financial drain. Once we focus on healing ourselves the soon we feel better. Changing how I think was the way I felt better, even though the disease is progressing for me I am on no disease modifying drug and my neuro was impressed with how I have reinvented myself, he saw me when I was a mess and when I had improved enough to make HIM smile at me. Dont think others are the only ones who can make your life better, take responsibility for feeling better, making your days better and giving yourself every advantage to delaying doctors and disease progression. You know and they know you have ms jsut not bad enough to pay attention to it, so begin making your life better, before you get to join the maze of medicine, it is not a fun place to wander. maria