The Doctor Dance

I decided to take matters into my own hands.  I previously had five knee operations so I thought I would just pay a quick visit to the Orthopedic Surgeon that did the repairs to get his opinion on the matter.  I phoned his office and asked if I could book an appointment at the fracture clinic to see him as I had ruined my knee again.  Just a little white lie.  My knee did hurt but not as much as the rest of me.  His receptionist said it had been over two years since I was there last I would need a referral.  I begged, I pleaded, so she booked me in.  After sitting in the waiting room for a couple of hours even with a scheduled appointment, he spent no more than three minutes with me.  I know how busy they are, but really.  He said it must be Lymes Disease.  No, I said, that had been ruled out.  He was going to order a bone scan.  I said that had already been done.  So, he summized nothing was wrong with me.  I jumped from the table at that remark and yelled, "Look at me.  You know me, how active and athletic I am, now when not at work I'm confined to the couch".  He said "Maybe that is your problem, your knee looks fine."  I explained as fast as possible all my symptoms, the blood tests, etc.  He said then it must be "Mono".  Mono?  "Yes", he said.  It can take three to six months, maybe a year before it settles down.  Just like Federer the tennis champ.   http://www.nytimes.com/2008/03/07/sports/07iht-arena.3.10811374.html  Looking for an answer desperately, this I decided was it.  I went back to my famly doctor and told him what the Orthopedic Surgeon suggested.  He did the blood tests.  It wasn't Mono.  I saw the Physiatrist, he did some elctrodiagnostic testing, an EMG, which can be quite uncomfortable.  He didn't know what was wrong.  He suggest cardio testing, a CT Scan, a Neurologist, etc. and wrote a letter to my family doctor requesting he make the appropriate referrals.  My family doctor didn't.  My family doctor referred me back to the Rheumatologist.  The doctor dance was just beginning.  I was frustrated.  My family doctor wasn't doing anything to help nor did he plan to.  He said trying to schedule an appointment with  Neurologist was just a waste of time, estimating in excess of a year wait time.  By then I would be better he said.  I thought I would pursue the allergy route.  I knew I was allergic to everything.  Maybe that had something to do with it.  I had been tested just a year or two ago and they claimed I was in the clear.  After taking allergy shots for 35 years, the allergist said they were gone.  I still had itchy eyes and throat and my nose ran like a tap, maybe he was wrong.  I picked an allergist out of the phone book and asked for an appointment without a referral.  He tested me and said I had allergies to pretty much everything and immediately started me on biweekly shots.  He said I should start noticing a difference immediately.  A month later, no difference.  My symptoms remained the same.  I saw the Rheumatologist again, he referred me back to the same Physiatrist.  The Physiatrist said it had to be MS or something muscular.  He didn't know and didn't refer me to anyone else, just the family doctor again.  Through all this I was still trying to work.  I tried Chinese acupuncture.  The woman was actually trained in China and spoke very little English.  I thought for sure I would get some relief.  I went 3 days a week for an hour each time.  She started on my shoulders, the needles just bounced out.  She couldn't even get them in, my muscles were so tight.  I started to faint.  She laid me on my back and put them into my abdomen instead.  She could perform the acupuncture there, but it didn't help my symptoms any.  She tried my lower back, I just jumped.  The needles would not penetrate the muscle.  After 4 weeks of this torture, we decided that acupuncture was just not going to work in my case, I would have to try something different.  She said I had better see my family doctor.  I decided to try a Chiropractor.  Big mistake, although he certainly meant well.  I would crawl in his office, lay on the table practically in tears, barely able to lift my head.  The headaches, the foot cramps, the pain all over was excruciating.  It was May 2009 now and the pain was beginning to concentrate more between my shoulders and in my neck.  The Chiropractor took X-Rays.  I had Scoliosis.  I took the X-Rays to my family doctor, he said they were Chiropractic X-Rays and set them aside. Meaningless apparently without a proper report attached.  He said they looked normal to him. Nothing out of the ordinary considering my age.  I asked if I could have a referral for Physiotherapy.  That he agreed to.  Again, I dragged myself out of his office.  I started Physiotherapy.  The Therapist said he had never seen anything like it before.  He had absolutely no idea what would cause all my muscles to be so contracted.  He worked with me three times a week trying to build up my strength and stretch my muscles.  I was getting stronger until he had me try the treadmill.  I would collapse with exhaustion.  Biking tired me.  He discharged me not really knowing what was wrong or how best to treat it.  By this point I could no longer hold my head up at lunch or dinner to eat.  Whoever was around would heat up my lunch or dinner and place it on a box so I didn't have to bend my head.  If my head bent, it would start to bop.  I wore a neck brace to work with a scarf wrapped around it.  I started getting the bops more and more frequently.  It wasn't just my head anymore, but my upper torso would go into these weird spasms, almost siezure like.  Totally frustrated and in great pain after work one day, I drove myself to a walk in clinic in Richmond Hill.  I saw a female doctor, who like everyone else was behind schedule and didn't want to deal with me.  I told her my story as quickly as possible.  She didn't want to do anything but said I should see my family doctor.  I cried.  I actually cried.  I, me, broke down and cried.  She told me it was against the rules she couldn't do anything for me.  I pleaded, I begged and said somebody had to do something because my family doctor was totally ignoring me.  She reluctantly gave in and ordered a CT Scan but said I was to do the follow up, that it didn't come from her.  Now well into August, I venture to the hospital for my long awaited CT Scan.  The technicians had to physically assist me to the scanner and try to get my head and body to stop bobbing long enough to get the pictures.  They decided I needed to be seen in Emergency immediately.  One of them retrieved a wheelchair and took me down to Triage where they proceeded to do their best to speed up the process for me to see a doctor.  The nurses in Triage were convinced I needed to see a Neurologist.  I called my husband and he met me there.  We were both excited I was finally going to get somewhere.  Seven hours later I saw the doctor on call, not an Neurologist at all.  He gave me luckily enough, but only 4, Clonazepam and told me to call my family doctor the following day as the results of the CT Scan were normal.  We got home between 1:00 and 2:00 in the morning.  My husband totally fed up with all the doctors and all my pain and misguided efforts decided to hire a private doctor.  Our benefit administrator had mentioned earlier to me the name of someone in Toronto, but is was costly.  By this point we didn't care what the cost was.  Somebody had to do something.