I was diagnosed with ms last week. This has been a long road for me and I don’t quite know if I feel relieved or not. About 11 years ago after struggling with massive migraines I had an mri done and they found a lot of spots that may or may not be from ms so I was sent for a spinal tap and that came back negative so it was decided that the spots were just from my migraines.
Fast forward a few years and weird symptoms began happening that didn’t make me think twice. I had a bad bout of vertigo for an entire summer, and a spot in my vision that they couldn’t figure out the cause of for 6 months before it disappeared. Almost 2 years ago I had unexplained severe low back pain and a few months later I had drop foot which slowly got worse over time. During this time I also developed bladder urgency. At the time it was all believed to be stemming from my low back, but nothing in my mris showed proof other than a very small herniation that wasn’t pressing on anything. After several failed steroid injections and my foot getting worse, my doc had me get an emg and nerve test which showed it wasn’t coming from my back, but somewhere in my central nervous system.
Last summer I had my mris of my brain and back which only showed the same spots (possible more) that were seen before and my neurologist basically dismissed it all. I got a new neurologist that sent me to a neuromuscular doc who ran some tests and didn’t find anything so she dismissed me with no further actions suggested.
My back doc tried a few more injections before finally deciding to kill off the 5 nerves that he believed were bothering me the most while also pushing for a spinal tap to rule out ms (this was February of this year). My neurologist told me that she didn’t think it was ms and didn’t want to put me through the pain if it wasn’t needed but sent me to an ms specialist to make the call.
Well all my symptoms stumped the doctor enough to do the spinal tap plus a whole bunch of other tests. I went last week for my follow up. My spinal tap came back normal and my mri showed the same spots as last year. However, my visual evokes potential came back abnormal. He went back and forth over whether or not to diagnose me. He said if my spinal tap had come back abnormal than it would’ve been a definite open shut case of ms. He finally decided on the diagnosis and I am now awaiting the nurse to come with the copaxone to show me how to use it.
After all my struggles I’m happy to know that all of my symptoms over the last year are not “ all in my head”, but I still am confused about the next steps. I go back in 6 months to get my baseline mris and decide where to go from there. I’m still experiencing the low back pain and foot drop and just hopeful that these symptoms begin to diminish soon with the meds.
I'm sorry to hear that it took so long for the doctors to finally make up their mind. I can somewhat relate to being prodded and tested when doctors don't know (exactly) what you have and it's not fun. I'm glad though things are starting to move forward for you. I hope copaxone is going to work for you. Though for now whatever is causing your symptons needs to heal and how long that will take is, in my experience, unknown.
I hope you'll feel better again soon. :)
It can be frustrating and confusing when first being diagnosed with MS. Please feel free to call and speak to an MS Navigator if you have questions. We are available Monday through Friday, 9am-5pm MT at 1-800-344-4867.
MS Navigator Abigail
Admittedly, it can be quite a roller coaster ride to come to a solid diagnosis. That being said, you will have symptoms that will come and go with relapses, but some may be around to stay. Case in point me: my feet started going numb when I started being a crossing guard over 4 years ago; even with treatment, they still feel like they're permanently asleep, but I am walking a bit better with the Ocrevus I'm now being treated with.
The entertaining part of m.s. is you get used to NEVER getting used to it. It will affect people in different ways at different times. My husband had a great-granny that was diagnosed with this illness and the worst that happened, as she aged, was she had to concentrate so she wouldn't drop her coffee mug. You'll figure out your "new normal" as you go, but always remember that the disease is a part of you but IT does NOT have YOU! Get treated how you feel comfortable because you are the one living with it. Not the doctors, not your family, YOU.
Welcome to Planet MS, and feel free to bend our ears about anything that's on your freckled mind. We stand together.