Hi my name is Irene: Part 2

- continued from Hi, my name is Irene -- part 1 --

I switched to another family physician in early 2008, this time an older, very experienced doc, who made listening into an art.  During the spring of 2008, my hands started to get very stiff, especially first thing in the morning, and after driving for a while.  I didn't pay much attention to it, until I just happened to mention it during a doctor's visit for something unrelated in late summer 2008.

My family physician gave me a prednisone dose pack, ordered me to take them, and tell the rheumatologist what happened after I took them.  Well, what do you know, after the first few days, when the dosages were still high, my hands became as supple as a pianists, but as the dosages declined, they got stiffer again.

In October 2008, I visited a rheumatologist who was recommended by my family doc, because the rheumatologist was still starting to establish his practice, so it wouldn't be so hard to get an appointment soon.  He listened to my story, ran multiple bloodtests again (including Lyme's), and had x-rays taken of my hands and wrists.  Although all bloodtests were negative for RA markers or Lyme's, and the x-rays did not show any damage to my joints, he diagnosed RA in my hands, and put me on a combination of methotrexate and prednisone.  

The methotrexate and low dose prednisone did not do very much.  In the mean time, my knees were starting to hurt, followed by pains in my feet, elbows and shoulders.  Everytime I had to come for a check up and bloodtests, the rheumatologist looked at my hands.  When I mentioned my knees, he looked, said "not swollen," and wrote it off as unimportant, maybe osteoarthritis.  He would not even listen to what I had to say about other joints.

Since methotrexate and prednisone didn't seem to do the job, he then prescribed hydrochloroquine, with no effect.  Eventually I was getting very annoyed with taking medication that didn't do me any good, so I slowly reduced their dosages (under doctor's supervision) until I was no longer taking those three by mid-2009.  Methotrexate also seemed to greatly increase the frequency and number of canker sores in my mouth, even though I took high doses of folic acid.  (After I stopped the methotrexate, the frequency and number of canker sores greatly reduced, but they still made a regular comeback.)

In the mean time, my left knee started to shake while going down the steps, and it also made a squishy sound.  (Knee pain was usually more severe in the right). However, walking down the steps sideways did not cause the problem.  The rheumatologist never responded to my reports of my shaking knee.

I also developed pain in my hips, which the rheumatologist diagnosed as bursitis in two locations on each hip, and for which he administered steroid shots.  My sore feet were diagnosed as plantar fasciitis.

I really had the feeling that the Dr. Not Swollen was only interested in RA, and did not want to "waste" any effort on his part to try and find out what was going on with my knees.  So finally, in January 2010, I confronted him and asked him to refer me to someone who could look into/treat osteoarthritis in my other joints.  He then said that he "could do" osteoarthritis also, and ordered xrays for my knees, and for my right shoulders.  It turned out that the left knee only had minimal osteoarthritis and the right knee mild arthritis, not really explaining the pain in my knees, nor the shaky left knee.  The right shoulder did show osteoarthritis with bone involvement.  Yeah, finally a diagnosis borne out by lab evidence!

I decided that I had enough of Dr. Not Swollen, and went back to my family physician in February.  I asked him to please figure out what was going on with me, since Dr. Not Swollen did not work out.  He first suggested that I would go and see another rheumatologist -- this time a veteran -- my appointment is not 'til next week!

Then I suggested (after reading a couple of books) that my symptoms could really be due to Lyme Disease, and that the tests would often given false negatives.  But now, I never had the telling bull's eye rash, and the many ticks that I've had, have always been dog ticks and lone star ticks, which do not carry Lyme Disease.  Anyway, he ordered the more in-depth PCR test, as well as a host of other blood tests (thyroid, rheumatoid arthritis, CMP, blood panels, etc.), which all came out negative.

Just in case, my family physician prescribed me a month's worth of antibiotics + a new pain killer (don't remember the name, it really irritated my esophagus and I had to stop taking it).  Anyway, it didn't make any difference.  

I went back to my family physician, and asked him if I could have MS.  Now both my legs were shaking going down the stairs, my feet were really stiff getting up, I couldn't lift my legs as high anymore, resulting in multiple bruises trying to lift my leg over logs, and didn't recover quite as fast when tripping in the woods + some falls.  He decided to order a brain MRI without gadolinium.

While I was on a controlled burn, the family physician called to tell me that there were numerous demyelinating lesions on my brain MRI, and that the most likely cause would be MS.  He immediately set up an appointment with a neurologist, on that just started to build up his practice ...

The neurologist agreed that there was at least one suspicious lesion on the MRI.  However, he didn't think that my story sounded like MS, it didn't have any obvious attacks and remissions.  He had me walk up and down a small hallway, and did a clinical exam.  He found hyperreflexivity and clonus in my right foot.  Not enough to diagnose MRI.

More tests were ordered:  a cervical MRI, thoracic MRI, EEG, and lumbar puncture.  The neurologist only wanted to see me again when the lumbar puncture results would come in, 3 weeks after the procedure.  (I tried to ask for his opinion of what he saw in the MRIs and EEG earlier than that, and was firmly told that was not according to procedure.  They did not want to give me the results.)

Finally after 3 weeks, I visited the neurologist again.  All tests were negative.  Therefore, the neurologist concluded that he could not diagnose MS;  rather it was going to be "Abnormal MRI."  He ordered for a repeat brain MRI in October.  He also referred me to an MS specialist at an academic hospital.  The hospital would call me to set up an appointment.  I still haven't heard from them after 3 weeks.  I called the neurologist last week to request pain killers for my feet and knees, but the only answer I got from his assistant was that the neurologist had only seen me for an abnormal MRI, and that "he doesn't do pain."

On another front, I was getting problems with word recall.  At some point, when I was at a store where you buy tools and stuff (can't think about the term), I wanted to look at wheel-barrows.  I was going to ask someone who worked there, but as I said "Could you show me ..." I realized that I could not find the right word, instead having to describe the darn thing.  I also got somewhat dyslexic, writing several checks for the wrong amount of money.  I thought that these annoying events were a result of the antidepressant Lexapro, so I slowly went off it.  It seemed to help some, but then I fell into a big black depression again, and my psychiatrist prescribed Cymbalta, which is supposed to work as an antidepressant, while at the same alleviating RA symptoms.

-- Oh shucks, I have used up all characters again.  Can you stand a part 3?  -

Irene