I'm brand new here and this is my first post. I hope it isn't too long or rambling!
I'm a 56 year old female living in Vancouver, Canada, married with one son (21).
In 2000, I was diagnosed with fibromyalgia, with all its attendant symptoms.
In 2003, I was diagnosed with SLE (systemic lupus erythematosus), based on positive ANA tests, very high serum creatinine, joint pain and swelling, malar rash ("butterfly rash" across nose and cheeks), extreme fatigue, depression, pleuritic chest pain, high susceptibility to viral and bacterial illnesses (weakened immune system), muscle pain and weakness, , low-grade fever, photosensitivity, Raynaud's phenomenon, and vasculitis. I was put on Hydroxychloroquine for treatment of the symptoms.
Fast forward to 2009/2010: I moved and saw a new rheumatologist, who glanced at my records and said, "You don't have lupus." I asked him, "Well, what do I have?" and he said, "I don't know." End of story. I went back to my family doctor and he has now referred me to another rheumatologist, hopefully one with a better bedside manner and good diagnostic skills.
Over the past year, in addition to my previously noted symptoms, I have developed:
-bladder incontinence; frequent urge to urinate; inability to completely empty bladder
-numbness & tingling in my left 4th & 5th fingers
-numbness, tingling, and severe pain in my feet and toes
-excruciating foot cramps (have never had these before)
-l'Hermitte's syndrome (a terrible shooting pain just like an electric shock going down my spine when I moved my head forward and down)
-constipation (have never been bothered by this before now)
-balance and coordination problems
-difficulty saying certain words or phrases
I saw my family doctor who immediately referred me to a neurologist, and meanwhile ordered a CT head scan and cervical spine x-rays.
Had the CT scan on Tuesday so don't have the results yet.
I saw the neurologist today (after waiting since the end of April for an appointment). He took my history and listened to all my symptoms, then did a neurological exam, after which he ordered nerve conduction studies on my left arm/hand to find a cause of the numbness and tingling there. The results showed an injury to my ulnar nerve (in the elbow groove on the bottom of the arm) with reduction nerve function.
As for the other symptoms, he said that with the diagnosis of lupus (even though the rheumatologist I saw last July said I didn't have lupus), the diagnosis was complicated. He did not mention multiple sclerosis. He did suggest it might be the fibromyalgia which I have had for many years (as mentioned above, I was diagnosed with this in 2000 but had been experiencing symptoms for many years previously, before a diagnosis was made. Had been told it was "all in my head".) He did order an MRI of the head and I was told that there is a "huge" waiting this. I said, "How huge? Will it be done by the end of the year?" and he replied, "Possibly not." Wow. I have all these symptoms, many of which are new, and am in severe pain, and I have to wait until next YEAR for an MRI? Gee, glad it's not an emergency...
If anyone has any comments or suggestions as to what this might be, I would love to hear from you. I'm wondering if it's all just the lupus flaring up, if it's MS, if it's my old buddy fibromyalgia flaring, or something different. I'm even wondering, "Is it all in my head?" (Those words haunt me. They seem so unkind for a doctor to say to a patient.)
Sorry for the long, boring ramble!