The Long, Winding, and Sometimes Wobbly Road to Getting a MS Diagnosis

Multiple Sclerosis seems to be one of the diseases that are challenging to diagnose. It seems like unless you live in an area where they see it frequently you may never know what is wrong with you. I could be completely wrong on that but that has been my experience. I have lived in 3 states and have had weird health problems for certain since I was 13 but they started before then. It took me moving to Colorado and changing General Practitioners multiple times to finally get one who listened to me and figured it out.

I remember complaining constantly of being so tired, all. of. the. time. and they suggested sleep studies, and Thyroid checks. Sometimes I wish it was my Thyroid, good grief they checked it every three months, guess what, not my Thyroid. When I was finally diagnosed the first neurologist I saw said there were more than 20 active lesions. She did not want to keep counting at that point, on the plus side, no spinal tap for confirmation of MS, on the negative side, you actually only need 5 active lesions to get the diagnosis if all the other blood tests are negative for the other things it could be.

Something I have learned by asking questions (so many questions), reading books, science papers, online journals and MS websites from around the world is that no two people have the exact same experience. Then general symptoms are the same for most, the onset is typically with the eyes, mine was not, but in general there is a list of symptoms and when diagnosis finally comes you may have a handful of them to varying degrees. If you happen to have any other health issues, it gets a bit trickier.

Some of the symptoms seem to be contradiction of each other, like an over active and under active bladder, but some people have to go all the time and others have to go but can’t. It is all about the nerve damage and how your brain is and is not communicating with your different parts. A list of symptoms, most likely not all, is below.

I track mine on A5 size template I made that fits into a normal sized bullet journal. I keep it with me and take it to all of my appointments. It also has a list of all of my doctors, therapists, health places and medication with dosage, who prescribed it and what it is for. The nurses love it as I don’t have to try and remember everything and they can just look at it. Also, my doctors have been able to make some recommendations based on the frequency of symptoms and changing one med from twice a day to only once and at night reduced my headaches and migraines from every day to every few days or less depending on my stress level. Check out “My MS Resources” Page to find a link to my templates that you can edit for your personal needs.

Signs & Symptoms that come with Multiple Sclerosis

  • Balance issues
  • Bladder Issues (incontinence, hesitancy, unable to fully empty bladder and thus bladder infections and UTIs)
  • Brain Fog
  • Breathing difficulties
  • Chronic Fatigue
  • Chronic Pain
  • Cognitive decline
  • Cold Intolerance
  • Difficulty Walking
  • Dizziness
  • Dysesthesia – pain or unpleasant sensation when being touched
  • Dysesthetic Itching
  • Dysphagia – issues swallowing
  • Electrical sensations
  • Erectile dysfunction (ED, impotence)
  • Excessive Sweating
  • Fine motor skill decline
  • Gait issues
  • Headaches
  • Hearing Issues
  • Heat Intolerance
  • Humidity Intolerance
  • Hypersensitivity
  • In-coordination of muscles
  • Insomnia
  • Internuclear ophthalmoplegia (INO)
  • Issues with 1-3 Balance systems
  • Loss of bone density related to steroids for flare treatments
  • Loss of feeling of limbs
  • Loss of sense of taste
  • Loss of smell or smelling weird things
  • Low grade fevers
  • Memory issues
  • Migraines
  • Mood Swings
  • MS Hug (which isn’t so much like a hug and more like tight pressure on the chest which sometimes can also be on your back)
  • Muscle Cramps
  • Muscle Spasms
  • Nerve Pain
  • Numbness
  • Optic Neuritis
  • Over Active Bowels
  • Over Heating
  • Painful involuntary muscle contractions
  • Paralysis
  • Pins and needles
  • Pregnancy problems
  • Restless Legs
  • Seizures
  • Sleep Apnea
  • Slurred speech
  • Stiffness
  • Tingling
  • Tremors
  • Under Active Bowels
  • Vertigo
  • Vision trouble (included loss of vision, blurry vision)
  • Weakened Immune System (when on DMTs be aware of the ones that cause you to be immune compromised, especially during cold and flu season)
  • Weakness

Modern Mothering to Boys

I always said “I want boys, I remember what I was like as a teenager and I DO NOT want a girl”. What I did not realize was that 11-12 year old boys, are just as emotional as the girls. It probably happens a little later but there is still door slamming, blasting music and mean words. Puberty snuck up on me, I thought I had until the actual “teens” before I had to explain body changes and consent to our oldest.

When my son was in the fifth grade I had a conversation with him about girls that had already started puberty. I informed him that puberty for anyone was hard, uncomfortable and challenging. If given the chance to make someone’s day easier or harder, you should always try to make it easier. We discussed menstrual cycles and how when you are going through puberty some times it happens without a girl knowing or being prepared. It’s hard enough being a girl (woman) and that should not be made worse because you weren’t prepared for your period and because of your clothing choice, everyone now knows. I explained that if he sees this, and someone starts saying things to not be part of it, better, if he knows the girl it may be nicer to quietly approach her and let her know. I know that latter could be very awkward for boys, but I wanted to give him multiple approaches so he can make the decision should he need to.

Consent in these times seems so much more difficult then when I was growing up. There were no cells phones or social media when I was in middle school and high school. No way to be easily harassed by people. Mean notes could be turned in to teachers, there was physical evidence that could be confiscated at any point in time. I remember when I was in grade school I wore denim skirts (it was the 80s), there was this boy who would drop his pencil by my feet and look up my skirt. One day, I had enough and I put his head in a vice grip with my knees until the teacher came over. That boy never did that again.

These days there are so many ways of being bullied or harassed, it’s hard to keep up. There are apps that allow messaging that I didn’t even realize like Instagram. I knew Snapchat was something I had to keep an eye on so we had a rule; there is only texting through the texting app. Any other texts happening and the app would be blocked. Instagram was blocked because profiles claiming to be grown women (who really knows these days) were sending messages to my child and then messages between friends started happening. Snapchat was removed as it was a different offense. The parental app we use to monitor our “minor” has been call the “privacy invader” by our son. “Yes, yes it is”, we say, you are not 18 so we are responsible for everything you do and we need to know what’s happening.

Consent isn’t just for physical touch though, it’s also for conversations you don’t want to continue. We’ve been discussing how continuing a conversation with negotiations once someone says the conversation is over is also a consent issue. It is not OK to keep forcing someone to keep talking once you have indicated the discussion is over or to follow people into another room when they are trying to leave the topic. Same thing for discussions with friends, potential romantic partners, parents, teachers. Consent is something we need to be teaching all of our children, and in every form of the word. Forcing people into something, physical, mental, whatever, is not OK.

I am interested, have you had to have these conversations with your children? What is your view on the topic?