Maybe, Maybe Not? A Waiting Game.
Last updated: March 2023
Hi everyone. I am a proud "47" year old woman. Sometime days I feel 21, other days 80.
Numbness and vertigo
2008: Years after having my son, I developed cystic acne. Nothing seemed to help but a birth control pill I was prescribed. I had no need for this besides the acne as my husband was "snipped." I suffered what I would say minor side effects (weight gain, moodiness, no sexual desire), but my skin looked amazing!
About 6 months after using the birth control pill, I experienced numbness on my left side, head to toe. I went to my family doctor which immediately took me off of the pills. The side effects diminished days after.
Weeks later I developed vertigo. Coming and going sporadically throughout the month.
A few months later I would have tingling sensations in my hands and feet.
Tested for MS
I had mentioned all these issues to my doctor at that time and she was concerned and mentioned maybe for me to be tested for MS.
I heard nothing from the doctor weeks later and decided to call the office. My doctor had left her practice to look after her ill parents abroad.
Back to the drawing board! Time to find a new doctor.
2012: I found a great doctor!
I would say I had no real symptoms up until a year or so seeing her. It started with bouts of vertigo that would last for a couple of days. A couple of times I actually fell over and hit my head. I've had many days of horrible fatigue. I forgot to mention, I don't go to see the doctor for much. It has to be really troublesome for me to do so.
MRI results showed no lesions
With episodes of numbness in my hands and feet, vertigo, a groin spasm that would make my leg give out and extreme pain in my elbows and forearms, and being diagnosed with extreme vitamin D deficiency, my doctor got me in for an MRI on my brain.
Results showed NO lesions.
Years passed with some of the same symptoms appearing and with extras added to the mix. One being my vision. I chalk it up to getting older but not sure about the blurred and double vision sometimes.
Extreme pain and numbness
July 2018: I went to bed and was woken with extreme pain. It felt like someone with large hands had wrapped them around my body and was squeezing my ribs. This repeated itself for 5 nights, lasting for 4 hours easing off the last 2.
October 2018: Woke up one morning. My left side was numb. Numb like when the dentist freezes you, but the freezing is almost out, but not. My entire face, tongue, neck, arm, hand, torso, leg, and foot. I waited for 5 days to see the doctor.
I was not wanting to be a burden on the doctor when it seemed like anytime I had any sort of symptoms, it came up as nothing.
I had another MRI
I was getting annoyed with the numbness and phoned to get an appointment. She couldn't fit me in for 2 weeks.
So I called my husband's doctor and he was able to see me the next day.
Doctors Appointment: I explained my symptoms, went over my history and he immediately ordered an MRI. I was scheduled in 2 weeks.
New symptoms appeared
During that 2 week period, the numbness eased but new symptoms appeared.
The large squeezing hands around my ribs came back but only lasted 2 nights for an hour or so. Then a brand new symptom that I had never experienced – burning feet! Not hot to the touch, but unbearable.
One other thing that I never really thought much about that I've had off and on over the years and has worsened the past few months was not being able to take the heat.
My showers and baths - I love scorching hot but can no longer handle. I have almost passed out at times.
Once again, no lesions
MRI Results: Once again, NO Lesions! MRI was only on my brain.
My doctor said he's not convinced that this is not MS. He is now sending me to a neurologist that specializes in MS.
I'm still waiting for a call with an appointment that they said would take 6 to 9 months to get. I'm not showing any lesions so I understand I am not an urgent case.
Waiting to see an MS specialist
I'm now just waiting patiently. Trying not to annoy my family and friends with the symptoms I am having by keeping them to myself, but it's frustrating, and hard for many to understand.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: