Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Things May Be More Than They Appear
At the age of 34 I had a relatively unremarkable medical history. Typical childhood diseases, mono as a teenager in university, normal checkups at my yearly physicals. So when I went to my doctor in January of '98 with gradual weakening on my right side, I figured I had a pinched nerve in my neck and told my doc that. She conducted a neuro exam and said she wanted me to see a neurologist. She'd get back to me, but if it got worse, I was to come see her again. In the meantime she sent me for an x-ray of my neck, as a pinched nerved or something out of sorts in my neck was still a possibility.
I had the x-ray the next day but the day after that I was worse. Back to the doc I went and she sent me straight to the hospital where I was diagnosed with probable MS at the end of the day. Time from onset of symptoms to diagnosis was 6 days.
My mother is politically active, behind the scenes. So over the years people have commented to her that I probably got my quick diagnosis because of her connections. She denied it, as she had nothing to do with it, and explains that I was very lucky.
I didn't have a thick medical file to begin with, no other major or chronic illnesses, no exposure to dangerous chemicals or the like at my job, and I had an excellent rapport with my doctor. I went to see her once a year for my physical and that was pretty much it.
A couple of years ago, I was facilitating a talk given by one of the neurologists about treatments of MS. One of the questions from the audience was "Why does it take so long for some people to get a diagnosis?"
In a nutshell, a few things are at work. First, presentation. We all know (or we should know) that each individual symptom in and of itself could indicate any number of things wrong. Vertigo? Inner ear infection. Tingling in your arm? You slept on it funny or it's a pinched nerve.
Second, our medical history may have nothing in it to indicate a predisposition to neurological events. No one in my family had MS.
Third, our medical history may be jam-packed with other chronic illnesses such as allergies, cancer, chronic infections, diabetes. Other illnesses are likely to be investigated first, before MS, as you have a history of them. Doctors are taught that "when you hear hoof beats, look for the horse, not the zebra." MS is a zebra. I had only horses in my medical history.
Fourth, cost and eliminating the obvious. Working up a lab for an inner ear infection is going to cost a lot less than an MRI for a tumour or MS. If the lab comes up negative, ear infection can be eliminated from the list of differentials.
Fifth, our own ignorance. How many times, pre-MS, have we attributed our symptoms to other benign illnesses? If we have a couple of days of vertigo we think we must have a flu or inner ear infection and it goes away. Tingling in our arm? We slept on it funny and after a couple of days it goes away. And those symptoms may have been days, weeks, or even months or years apart. So do we associate one with the other? Nope. It's not until reflection after diagnosis that we can recall symptoms that may have been indicators of MS. I recalled being at the movies a few months before my diagnosis and experiencing tingling in the fingertips of my right hand. That symptom lasted a couple of days, then went away, forgotten until two years after my diagnosis when I was thinking about any possible symptoms I had long before my diagnosis.
A study was released this week that indicated that people who were obese, smoked, or had other physical or mental health conditions took one to 10 years longer to be diagnosed with MS than those without those conditions. The more medical problems someone with MS had, the more severe the disease became by the time they were diagnosed.
The results of the study are not surprising. What is interesting, though, is the level of disability reached for those whose diagnosis was delayed. One could hypothesize that early diagnosis and early treatment might delay disability, which is the point of the disease modifying drugs.
The lessons to be learned from all this info? Take responsibility for your own health care. That means eat right, sleep right, and exercise; take care of your body, know your body. Learn what you can about any other conditions you may have. Develop a good relationship with your doctor.
Once you are diagnosed with MS, you still have continued responsibility for your own health care. Not all symptoms are MS related. We still get the flu, cancer, arthritis, or Parkinson's. Just because you are the proud owner of a zebra, there's still the potential for a herd of horses to be hanging around.
Lots of blogs out there include comments about how isolating life can/does become when so much attention has to be given over to the body basics so much of the time and how it is often difficult for others to grasp the full impact of what is going on. In light of these challenges a couple of links about Living Libraries might be of interest to others.
For those that have not heard of a Living Library, a Living Library has Living Books. A Living Book is a person, that has chosen to be a public representative of a certain group. An example of how people can be, if only minds are open long enough to find out, who and what they really are. But before anything else, they are courageous people that stand by their convictions and are willing to discuss their values with others.
Maybe people have one in their area or like the idea of starting one in their area?
Singer Melinda Schneider has written a song called 'Be Yourself' which was inspired after seeing a program about one of the Living Libraries on a talk program by a well known Australian interviewer Andrew Denton.
Here's a snip from the interview (full transcript) where she talks about the trigger for the song:
ANDREW DENTON: Melinda I want to show you a clip from ENOUGH ROPE of a transvestite called Sarah who inspired you to write the song you're going to perform at the end of the show called Be Yourself.
MELINDA SCHNEIDER: I just loved the story of the living library.
ANDREW DENTON: Yeah.
MELINDA SCHNEIDER: And his or her story was a fascinating one. Yeah I just I loved the acceptance of his wife when she you know when he told her that he was a transvestite and he'd been hiding it from her and she said I don't care what you do, just don't lie to me and they stayed married and you know he was able to do what he wanted to do and you asked him you know if there was anyone out there going through what you went through what would you say to them and he said be yourself. Everybody else is taken.
MELINDA SCHNEIDER: And it hit me like a tonne of bricks because it was exactly what I was going through at that very time coming out of my divorce and getting back to my old self again and I just loved it.
This concludes the 25th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on January 1, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, December 29, 2008.Comments for this post.