PMR or Something Else?

I have been impressed by the level of knowledge and willingness to share advice on this forum.  I have been battling an undiagnosed illness over the past 19 months. PMR is now being considered.  I will try to keep this concise, but I can see that many of you have also experienced  prolonged diagnosis stories. 

Here is my background and relevant medical history. I’m 54 and have been very active my whole life. Had C3-7 spinal fusion in 2008 - herniated discs and bone spurs from an accident.  Raynauds for the past 10 years.  Diagnosed with late stage Lyme disease in 2009.  Contracted Lyme in 2008, very ill for 7 days with 104 fever, even photographed the rash. Lyme has been treated several times over the years with 6 weeks of antibiotics and once with 3 weeks of IV antibiotics.  Since 2009, Lyme type of illness knocked me down once every 3-6 months for 1-2 weeks. 

Current illness started February 10, 2014.  It had felt like I was starting a round of Lyme symptoms, due to increased muscle pain and fatigue.  I then awoke in the middle of the night with stabbing pain under my shoulder blade and could not move the right side of my body.   This was unlike anything I had ever experienced.  I couldn’t even take a breath without the stabbing pain.  All of my muscles were painful, twitching and in spasms.  I thought that my spinal fusion failed. Saw my spine doctor.  He ordered MRI.  Then new symptoms of night sweats, migraine, fever, dizziness, eye disturbances and GI problems started.  The pain under my shoulder blade migrated to the other shoulder blade.  The new symptoms now seemed to point to Lyme. 

I tried to see my Infectious Disease doc, we refer to as Dr. House.  He couldn’t see me for 3 weeks.  I then found a “Lyme specialist” who could see me.  She had me go on an anti-inflammatory diet, immune system supplements and Chinese herbal antibiotics.  I finally got in to see Dr. House.  He felt that my Lyme disease had triggered PMR and GCA, the treatment is long term steroids and I should see a Rheumatologist.  The Lyme specialist reminded me that steroids are terrible for Lyme.  Back to Dr. House.  Let him know that I was feeling somewhat better with the supplements and diet.  Decided to continue treatment with Lyme doc but keep PMR and GCA in mind. 

The fevers and night sweats finally subsided after 4 months, due to Lyme doc treatment or just the course of the illness.  By November, my symptoms shifted to be primarily severe muscle pain in my quadriceps, shoulders, arms and trapezius.  I also had nerve pain in my hands and some dizziness and fatigue. My muscles had atrophied significantly.  Back to spine doctor.  He ordered MRI’s of neck, back and brain.  Nothing significant on findings.  Referred to Rheumatology and then Neurology. Spinal tap, autonomic testing and multiple EMG’s.  Neurology now feels that I should go back to Rheumatology.

Here are the results of this medical saga.  Blood work – initial sed rate of 48, C reactive protein of 4.8, slightly anemic, elevated liver enzymes, low insulin 1.6 – some blood sugar issues.

EMG showed bilateral carpal tunnel and ulnar nerve entrapments.  This 2 hour EMG from hell really flared my symptoms.  I ended up in urgent care and requested a steroid burst.  The burst reduced symptoms by day 3. 

I’m not a fan of the young Rheumatologist I was assigned.  He was immediately offended that the Infectious Disease doctor would suggest PMR when it’s outside his specialty.  That’s the way it always works when I watch Dr. House.  A good Infectious Disease doctor has to know a lot about every type of condition.  He also feels that at age 54, I’m too young for PMR.  My sed rate and C reactive Protein were initially elevated, but were normal when last tested in December.  Didn’t agree with my research that PMR patients very often have Carpal Tunnel.  I asked him to give me his opinion or even a short list of what this could be.  Not one suggestion.  He is tapering me off steroids and then will run repeat blood work.  I have never been so frustrated and miserable.  I just want this saga to end.    

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