Saturday, August 16, 2008

The doctor never said the words, “You have MS.”

[Begin reading my story with Eyes in the Back of My Head]

When I attended my first ‘newly-diagnosed’ meeting at the Neurology Center, patients were asking each other, “When were you diagnosed?”

The month was September 2005 and I recognized one of the other patients with whom I shared space at the Infusion Center in August. She was one of those MS patients who had received a quick diagnosis, not even requiring a lumbar puncture (aka spinal tap) to test for the presence of oligoclonal bands which are seen in the spinal fluid of 90-95% of multiple sclerosis patients.

“I haven’t been yet.”

That’s right. I had already undergone two rounds of MRIs; the first as directed by my primary care physician to look for the cause of a ‘pinched nerve’ in my neck, the second as directed by the neurologist from whom my doctor wanted an expert opinion. I had one lesion in my cervical spine (neck) but my brain appeared normal, although 5% of confirmed MS patients do not initially have brain lesions on MRI, according to the National MS Society.

It was after the results from the spinal tap came back that the infusion nurse called me on a Friday afternoon to schedule a 5-day course of Intravenous Solumedrol (IVSM) the following week. My road to diagnosis never included a hospital visit.

“So does it say in my chart whether it’s MS or not?” I asked the nurse as she was preparing to start the IV.

“What did the doctor tell you?”

“He didn’t yet,” I replied.

She gets the high-dose steroid drip started.

“Let me go find out what I can.” When she returns to the room of IV-laden folk, she informs me that the doctor is on vacation and that he’ll have to speak with me when he returns.

“But you wouldn’t be here if there weren’t a very good reason the doctor wanted you to have the steroids,” she adds.

I think it was Thursday when the doctor returned from vacation and the nurse grabbed him to come talk to me while I was tethered to the drip. Somewhere between the muttered words, and yes he tended to mutter and I tended to not be able to understand him, he mentioned demyelinating disease. Non-specific demyelinating disease.

It would be another round of MRIs and two more months before I was officially diagnosed during a doctor’s visit in which he never outright said, “You have MS.”

In the meantime I was invited to participate in the monthly ‘newly-diagnosed’ meetings held at the Neurology Center led by my (now) MS Nurse.

So when asked in September 2005, “How long have you had MS?”

My reply was, “I don’t....yet.”

How about you, how long did you have MS before you had MS?


  1. Like most people, I probably had symptoms of MS a good 5 years before DIAGNOSED with MS...fortunately, for me, my symptoms have always remained "mild" in comparison to some, so the idea of having a chronic, debilitating disease never crossed my mind. I just thought I was lazy and needed to push myself harder and stop being a hypochondriac! LOL Now with the diagnosis, I have MS and am most likely STILL a hypochondriac...sigh... :-)

    Linda D. in Seattle

  2. I've blogged about this but it bears repeating as it was funny to me then and still is now. After the doc told me I had MS I was going to be admitted to the hospital. That took a little while so when the admitting nurse came to get me she looked at my chart ans asked me "How long have you had MS?" "About an hour and a half", was my reply after looking at my watch....In retrospect I may have had it anywhere from 3 months to 5 years before diagnosis.


  3. Shauna, i remember that story. Very funny!

    Linda, i had ON 5 1/2 years before diagnosis.

    I think I forgot to include in this story that during the official diagnosing appointment, my neuro explained (what I already knew) that my recent MRI films showed three lesions. The smaller two were kinda there 3 months before but were not the required 5 mm (or whatever) and were not "appreciable."

    So the doctor said that two more lesions were present (not active). "Okay?" And that MS must show the separation in time and place, blah, blah.

    Then, he said we could now move forward and talk DMDs. He said everything besides, "You have MS."

    I even left the appointment (my mom was with me) kinda wondering. "Is it official now? Or does this just mean we can start meds because it's just a stronger probable dx?"

    Not hearing those words, surprisingly did make it hard to sink in for real, although I really already knew because of the "book definitions."

    Hey, maybe this is my next story post.... Yeah, that's right.... it was the plan all along. LOL

  4. I had one day of vertigo and puked about twenty times. The next day I was still really sick so my husband took me to the ER. They did a CT and it was irregular so they told me to get an MRI. The vertigo did not disappear and two weeks later I had the MRI of my brain the day after my second visit to the ER due to vomiting blood.

    I had two lesions (one rather large on my cerebelum) and they diagnosed me within 24 hours and put me on Prednisone.

    In retrospect, I had a few more minor symptoms early in the year. Once I was so dizzy and sick that I thought it was a migraine. This and an episode of vomiting occured again about a week before my severe vertigo and puking. I suspect I may have had the disease a long time without knowing it. I think I may have developed the lesions in my late teens but I have no proof. My only evidence is the severe hormonal issues I have had over the years but they may or may not be MS.

  5. One of these days, someone better start teaching doctors that medicine isn't just about blood, and bones and tissues and disease. It is about people. Doctors do not treat a disease. Doctors treat people. These people ... patients ... need at least as much of a doctors HUMAN attention as the staff, the medical supply company, the malpractice insurance company and the doctor's precious car and boat. Every single doctor should be requred to watch The Doctor ( at least once each year and write an essay.

    Sorry, this aggravated me a bit.

  6. My first syptoms started 41 years ago at age ten, after a pick up hit me and my head tore off a chunk of curb. On/off short term, never told mom stuff, then in 1986, starting a new job (that I would keep 18yrs) my entire side went dead, from there on/off stuff until 1990 MRI and there it was. Once I saw the neurologist--bam bam, very fast. I had all the diagnostic standard MS stuff; not a hard DX by 1990.

  7. I know what you mean, and the words can sound undefined and vague, I actually sort of brute forced my neurologist into it (this was my second meeting - a week or so in), I said "do I have ms" she started talking about my results, I kept on "do I have it", until she said yes. Perhaps it depends on your personal need, for me I needed to hear one way or the other so that I could process it and start doing what I could to help it -

  8. Welcome James and Gina, nice to see you both.

    You likely haven't followed the whole story leading up to diagnosis which really took about 12 years from when I suspect that I had my first symptoms (subtle optic neuritis).

    Like Diane, I believe that an injury to my neck (whiplash) contributed to the development of lesions in that area.. And with my eye sight (extremely near-sighted, kinda like 20/1400, no kidding), I've had periods of blurriness that just seemed like it was time for a new prescription.

    At the time, I didn't really think that hearing those specific words would be important. But now, I kinda get just a twinge of jealousy for those who get quick, decisive declarations.

    Linda, I've always been the one in my family to have the hypochondriac streak. I owned a big medical encyclopedia even in high school and enjoyed reading about symptoms and diseases. Just last year, i picked up a recent Merck Manual at a library book scale. Those really thin pages and tiny print, and such great, condense information.

    I know, I'm a geek. But most musicians are. LOL

  9. Hi! Lisa
    I can't say exactly when I had an official diagnosis of MS, around March 2007. The doctor who reviewed my first MRI 3 years ago said yes, however my neurologist at the time wanted to rule out any other possibilities . He claimed I was too old to have MS I think if he had taken the time to review my medical history and asked the right questions he would have seen a pattern that stretches back many years. At the time I didn't even know what MS was, so off I went for one test after another and appointments with various specialists. It was partly my fault because I blew off so many symptoms. For example I have had so much foot surgery I thought that pain, tingling, burning, twitches,and numbness were part of that. When I had trembling in my fingers I thought I had Parkinson's and thought "Oh well I'm going to die so to heck with it" and never said a word to anybody. Silly, I know
    Now that I know what MS is I think I've had it for at least ten years

  10. ten years for me...optic neuritis was my only symptom and then nothing...least i think nothing for a decade and then...symptoms and a diagnosis. what a wild ride!

  11. It was about ohhh...25+ years ago and I felt some "worms" crawling around my legs. I told my PCP about it and he handed me a prescription for prozac. My BF had the same problem. Same doctor. Same attitude. Different drug tho!

    Fast forward. After recurrent ON, with IVSM, additional symptoms I was diagnosed with MS after a positive spinal tap.

    My BF was diagnosed with both an MRI and Spinal Tap 6 months after I was. Eerie, no?

  12. I had undercover MS (masquerading as chronic maxillary sinusitis) for 4 years before my diagnosis. Now I've been told "officially" that I have it, but I'll REALLY believe it after I get my second opinion in a few days :)

  13. Hi Lisa, I just noticed the dates on these comments and feel like Rip Van Winkle. Boy, why am I just now reading your amazing story? I recognize a lot of names of bloggers who seem to have disappeared, too.

    Thanks, although late, for sharing this story and amazing pictures as well. -Joan

  14. Wow Lisa, I don't think I have read this post before (although with my addled brain I could be wrong.)

    Sorry this happened to you, we all deserve better. I have had a very similar experience. I also got sick in August/September 2005. I also wasn't told it was MS, just "possible MS". It wasn't really until the Spring of 2006 that someone finally told me, and also didn't use the words "Multiple Sclerosis". I wrote about it here:

    The poor provider/patient communication process is outrageous. They need more time on the subject in school, but it is viewed as fluff, not real medical training. But I would say 90% of being a good doctor is communicating well with your patient.

  15. I didn't know how long I'd had it until my second Neo Doctor told me it should have been treated much more agreesively and went through my med file with me he kept saying missed and how could they have missed that! After about 1/2 hour he closed the file then said I'm sorry but from your records it's been missed for over 20 years and now your not R.R. your PP. This was in 2002 after being told it was RR on Sept. 12th 2001.

  16. Lisa,
    For those you have spoken to, are cerebrospinal tests the norm for diagnosis or MRi?