Sunday, January 27, 2008

How Was I Diagnosed?

As people I work with find out I have MS, I am very often asked how I got diagnosed. I've been told that it really was very typical........My list of circumstances for diagnosis. I had three "episodes", the third is what lead to the MRI's/Neurologist/Diagnosis. In September of 2007, shortly after Labor Day, I woke up with an acute vision change. The only way to describe it was a distortion of my vision of only my right eye. At the time I was suffering with the typical fall hay fever I usually get, so at first I blew it off and by the time I realized it wasn't really going away it was the weekend and I had to work. So the following Tuesday, I called my Doc and described what was going on. She immediately made arrangements for me to see an Optho as I have been Diabetic for 11 years and as a naughty person had not gotten my eyes checked in 7 years. It's expensive and insurance doesn't cover eye exams and husband and daughter come first. So I went and she saw 2 retinal bleeds, decided to give it a week, constantly checking in with me to see if it had resolved. I went back and they had resolved but there was a new bleed and edema on my optic nerve..........Optic Neuritis and she ordered an MRI. And my several little active holes lit up. Next step Neurologist/MS specialty.........The Optho Doc would not commit to any possibilities as I layed them all out, after all I am a nurse and by then had done a fair amount of research. I had pretty much come to a conclusion after viewing my MRI and reading the report. Funny enough, my money was on MS. I would rather have that than a metastatic lesion! Saw the neurologist and he was pretty convinced it was MS after taking my history, but ordered another MRI to check my C-spine. Hind sight is always 20/20. In January of 2007, I had woken up with the classic MS symptom of bending your head forward with the electric shock feeling down both arms and numbness and tingling in my arms, especially my left. I saw my Doc at that time and I had a crunchy neck and we decided that it may be a little arthritis as she knows well my history of injury from horses. She put me on Naproxin, which seemed to work, but little did I know that it takes about a month for episodes to resolve on their own and that's how long I was on the Nap. I also had a weird bout of horizontal vertigo in November of 2006 lasting about a month and saw a Doc, thought it was viral. When I look back on the past, I've had balance issues for about 2-3 years at that time and was no longer able to pull myself up onto the horse without my trusty mounting bucket. I noticed the balance especially while riding horses. Couldn't figure it out, just thought I had lost my skills or I was light headed from working night shift or something. All the little ailments that encompass MS that you blow off as aging or for me Diabetic neuropathies and night shift work for a decade. So there it is..........With the diagnosing episode I also have had and still do have a stiff left side of my neck and a slight foot drop on the left. At the time I thought it was due to a full week at the county fair of walking and hauling a 35 pound saddle around. I've had small to moderate muscle spasms for a few years and thought that I drank too much Diet Coke and needed calcium supplements. So here I sit with what I deem as mild disability with a permanently stiff left neck and left foot. Periodic whole body stiffness, but only when not well rested. Little annoying muscle spasms 80% of the time at my estimation, forgetfulness, word fishing-often, sometimes inability to concentrate. Alot of things I had chalked up to Diabetes & Nocs even though for 10 years it has been very well controlled. My husband was initially very taken back with the Dx, but has adjusted well as I think I have. My first labs since the start of Avonex will be this week. So here's hopin' my liver is good. I think we'll pass as I haven't turned yellow and I haven't bruised any easier than I ever have. Thought I'd just share and compare.


Anonymous said...

Hi Callie:
Thank you for sharing your story.

I never ceases to amaze me to read someone else's story. And yes, hindsight is 20/20.

I often wish my diagnosis came sooner because of all the mis-diagnoses and terrible treatments that were (and were not) available in 1976. The worst was plasmaphoresis, I think.

I am glad you are doing well on Avonex. You always sound so chipper when I stop by. BTW, I love your other website "Look What I Found For Sale" - it is a hoot.

Here's hoping your bloodwork turns out well. I'm sure it will, since you aren't yellow yet! LOL



Personally, I haven't seen a sighting of my "hind" in a few years! But I'm sure I don't need glasses to see it...

The things we chalk up to aging, or injury, or...just glad you've finally gotten it figured out. I do think we are better off knowing than not.

Linda D. in Seattle

Diane J Standiford said...

Good luck with the drug. What a great time to have MS---so many drug choices. All MS DX stories are similar yet very unique...just like MS.

Sharon said...

I think as women even though we listen to our bodies and know something isn't right we put it off knowing there is so much other stuff we need to do.
As far as the hind sight, mine has been sighted for awhile now. Can't miss it! I'm working on that.

Callie said...

Thanks all, for the comments and support!

mdmhvonpa said...

Uff-da ... if only we had your knowledge. Since I'm a guy, the MS diagnosis was repeatedly given short shrift in favor of some other cause. Lyme, aids, cancer ... all till only one diagnosis remained.

Callie said...

mdm.....One of the girls I work with was being treated for Lupis for years before they diagnosed her.

harkoo said...

I suffered fatigue for years in my 20's but I kept very, very active and worked right thru it. Doctor's told me many reasons I might be fatigued: I went to China for my honeymoon and he thought I picked up a parasite, I was also an artist and he knew they were neurotic as hell, and another said I was a nurse and a hypochondriac........the year I was dx, I limped during my nursing shift and passed it off but soon I developed diplopia and that finally got my dx. I can see it would be hard for you to tell the difference between the neurological symptoms of diabetes and MS. I think it probably takes about a decade to get diagnosed. You are lucky you are having good luck with avonex--we didn't have any drugs when I was dx. I have just had to stop my avonex as I was too nauseated.