Wednesday, July 15, 2009

When Skip Got Diagnosed

Writing the post last Thursday about the MS Clinic visit got me thinking about the period up to and shortly after Skip's diagnosis. The neurologist she had at that time could be characterized as the polar opposite of the MS Clinic she visits today.

In 1984-85, we were living in the South End section of Boston. Skip was the manager of a local upscale gourmet store, where she also cooked many of their prepared food items. During this time, she began to have a tingling/bruised sensation in her thighs that didn't go away. After a while, this was joined by numbness and tingling in her hands. One of the customers at the gourmet store, who we occasionally socialized with, was a chiropractor. Skip began to see her as a patient in the hopes her ministrations would solve the sensation problems. Despite frequent visits and adjustments, no reduction in the funky sensations occurred.

The sensory symptoms continued but didn't have a significant effect on Skip's ability to work. We left Boston and lived briefly in an apartment in Malden, a small city outside Boston. In 1986, we moved to a two-family house in Medford, occupying the top floor. Skip worked as a cook at a nearby gourmet shop for the first year or so we lived there. Then, in 1988, she got a job working at a very successful restaurant in Cambridge, cooking for the lunch trade. While working there, she began to experience weakness in her left leg, and found herself really dragging, stumbling as she caught a toe on the sidewalk as she walked from the restaurant to her car at the end of the day. This went on for a bit, until she slipped on some water in the kitchen of the restaurant one day. She did something to her neck in the fall and ended up wearing a neck brace (or casting it aside, as often happened) for a bit. Symptoms from her as yet undiagnosed MS continued to build, but were perceived by all of us as caused by pinched nerves, resulting the fall. Without much of a satisfactory resolution to her problems under the care of conventional doctors, she decided to try out the services of a local chiropractor recommended by a friend. This chiro also had an acupuncturist in her practice. Skip worked with both of them to see if her symptoms could be cured.

I have such a silly, vivid memory from that period. We were walking down the stairs from our apartment and looking down at Skip's head, I saw something light blue in her hair. Turned out to be a needle the acupuncturist had forgotten to remove.

Anyway, after a few months with the chiro, she told Skip one day that she could not help her. The chiropractor said she had multiple sclerosis, a brain tumor or a tumor on her spine, and she should be examined by a neurologist! Another vivid memory from that time. I remember being absolutely horrified that the chiropractor would have made such a rash and alarming diagnosis with no basis in fact. At least, at the time, I perceived it was a rash and alarming diagnosis.

Skip's mother had a lot of chronic illnesses and saw docs at Mass General Hospital. From her, we got the name of a neurologist to consult. Skip set up an appointment and we went to see him. She was put through a battery of diagnostic tests including an MRI, evoked response and a spinal tap. The spinal tap occurred the Wednesday before Thanksgiving in 1988. The following day, Thanksgiving, we went out to dinner with Skip's parents and a few other of her family members. I remember she didn't feel all that great. After dinner, we drove down to Cape Cod to spend the remainder of the weekend at my parents' home. By the time we got there, she'd developed a full-blown spinal tap headache which lasted through the night and into part of the next day.

(Interesting, until I wrote out this history, I couldn't remember the year in which Skip was diagnosed. Remembering where we lived and the Thanksgiving spinal tap headache now pinpoints the timing almost exactly.)

Skip met with the neurologist shortly after the spinal tap. He told her the test results indicated she had "demyelinating disease." He said he didn't want to call it MS it was such a mild case. I thought he didn't name it MS because he was a chickenshit and did not want to be the one to deliver the bad news.

The diagnostician referred Skip to another neurologist in the practice. He prescribed a course of oral steroids (prednisone). I remember waking up one weekend day, finding Skip already up. I went out to find what she was up to. She was totally energized. Breakfast was made. She said the theme from "Rocky" was playing in her head. Steroid pumpage!

Symptoms continued to build. Skip really couldn't handle the physical demands of her cooking job and had to quit. She continued to see the neurologist who also referred her to a urologist for her bladder symptoms. She began to use a cane when out and about.

In these early months following her diagnosis, she saw the neurologist with some frequency. Never once did he say something like, "how are dealing with your diagnosis?," "how are you handling the effects of your symptoms in your day-to-day life?" Not once! We were simply muddling through with no guidance or advocacy from her medical providers.

Early in 1989, we moved into our current home. Skip got a job at a nearby gourmet shop, hoping the somewhat less physically demanding job than at the restaurant would be manageable for her. I think she lasted about 2 weeks before she realized she couldn't handle it and had to quit. At my employer, we had some intermittent contract work that would allow her to sit while working. She would drive in with me on the days she was going to work. Even that sit down job eventually proved too demanding, and she stopped working altogether. It probably wasn't much more than a year from time of diagnosis to the time she was no longer able to work.

As you might imagine, Skip had a difficult adjustment from working person to non-working disabled person. Perhaps in a future post, I'll write a bit about those early years.


Herrad said...

Hi Cranky,

Thanks for sharing the story of Skip's diagnosis.

Made me cross to read you had no guidance and support from the doctors after diagnosis as well.

Bloody hell makes you wonder how many have been treated like that.


awb said...

I can empathize with you both, I'm almost 22 years past diagnoses and have yet to have a neuro explain what MS is! Teaching hospitals like Johns Hopkins and University of Maryland are awesome places, if you have a fatal, or chronic decease they can learn from. If you are run of the mill, they aren't very interested. I had the head of the neurology department at Hopkins tell me I should be happy, plenty of people had MS worse than me, and walk out. Never been back there!

Cranky said...

Herrad - I suspect what Skip experienced is fairly typical, unfortunately.

Andy - talk about bedside manner! You have to wonder what these docs are thinking sometimes.