First test for possible patients – how patient can you be?
It’s rare when you can go to an amusement park and not have to wait in the line ride before getting on board. Sometimes it’s a long wait and other times pretty quick, in the scheme of things. Being diagnosed with multiple sclerosis can be like that. In the past it may have taken ten years to rule out every last alternative before coming to the conclusion and diagnosis of MS.
I’m glad I didn’t have to wait for ages, super long lines are not amusing! It only took two months of utter confusion and basically being glued to the couch and computer, searching for possible answers to the numbness in my hands and feet; weird tingling and aching up my legs that made me shake them out, looking like I was doing the potty dance; slurring speech; holding onto walls to walk around my little house, and being too tired to chew my food. It was like being constantly drunk, with no fun party involved.
So here’s what it took to get my results:
- a general practitioner, who took blood, then called to say all my labs came back normal except for something about my thyroid; an endocrinologist and neurologist were recommended
- a chiropractor (not a slipped disc or pinched nerve)
- an acupuncturist (nice and relaxing, and she new about me needing to take calcium, which was discovered soon after); no help for the numb-ish hands and feet, though
- a trip to the ER after all my nerves went crazy, where they discovered that I was low on calcium and potassium, which made my hands clench up while I was driving with my son – scary!!! I then checked myself out against doctor’s wishes because my insurance didn’t work at that hospital and I didn’t want to stay overnight. (Should have, though.)
- another ER visit, where after taking more blood, they still didn’t have answers and discharged me (there was one mention of MS, but not taken too seriously)
- a consultation with an endocrinologist, no thyroid problems, I could scratch that off the list!
- a neurology consultation, where the ball finally started rolling; an EMG for nerve conductivity and an MRI were ordered, along with more blood being drawn and tested
- my peripheral nerves were found to be functioning properly, but the MRI did not look good; neurologist got on top of it
- next up, an infusion of Solu-Medrol, an anti-inflammatory steroid (first of three), then straight to the ER again on doctor’s orders to get a lumbar puncture (spinal tap)
- steroids helped, little by little, and brought my hands and feet much closer to normal (but left me with the itchy side-effect of every pimple I had fought for 20 years coming back at once. Not pretty.)
- so with the MRI (not a tumor!) and results of the spinal tap, the diagnosis was made that I have MS. Bummer news, but at least I had an answer and knew what I’d be dealing with. The mystery had been solved, that I have the mystery disease.
I asked my support group about how long their diagnoses took and what test were done.
Luckily(?) for several of them it was pretty quick, from only 3 days to 3 weeks. Going temporarily blind in one eye or having blurred or spotty vision, sometimes with pain, all due to optic neuritis is a sign that is usually suspected as MS. MRIs are ordered and if lesions are seen, there you go, get on board.
For most people, like myself, it took a couple of months including the usual MRI and lumbar puncture to get a definitive answer, which is not too bad. It took an entire year for one person to get an answer, which resulted in a change in doctor, as it should have! The line ride should never be that long, and your doctor should be thorough and timely in a diagnosis with anything this major. Really, it’s just mean to let a patient wait and wonder what the heck is going on, making them live up to the name.
If you’re reading this and you have been diagnosed with MS, let me know in a comment below about what you had to go through to get your answer, and how long it took being the mystery patient, waiting in the line ride.
It’s time to start moving and take control of your health!
I am here for you, so sign up for a free consultation if you would like some one-on-one support in how to do that. Roller coasters can be scary, but a little less so when you have someone by your side, riding with you.
Subscribe to join me again next time, when we’ll talk about the end of the waiting, and how you were told the adventure was about to begin.
Remember, you CAN be healthy with MS!