The Elusive Diagnosis

The Elusive Diagnosis

As I said in my first blog,  it took me years to be diagnosed. It was an incredibly frustrating experience. I knew that my brain was not working properly for a long time but no one believed me - at least not the medical profession.  My family and friends knew something was very wrong. Even my employer knew that I was no longer able to function at my job. 

Some of the doctors thought maybe I had a sleep problem and fibromyalgia but basically there was nothing seriously wrong. After so many doctors telling me it was all in my head, finally even my husband started to doubt me. I, too, began to wondering how I could have all of these very strange symptoms yet the doctors said nothing was wrong with me.

By this time, I had had it with doctors. I vowed to never go back to another doctor after the final straw with a psychiatrist. He didn't think I could possibly be sick because I looked too good ( and he said something like attractive which doesn't bode well for his professionalism.) Being told that one can't be sick because they look well is a common complaint of people suffering from lupus. And beware, if you know too much about medical terms and search the internet,the doctors will also suspect that you are one of those people who is faking it.

The vast list of doctors, tests, and medical conditions I am going to mention, may be quite confusing for you. Thus please refer to the list of definitions following this blog if you need more explanation.

After seeing four rheumatologists, two cardiologists, two internists, two neurologists, two visits to a MS specialist, an ears/nose specialist, a gynecologist, two gastroenterologists, two naturopathic doctors, two allergists, numerous clinic doctors, two sleep specialists at the University of British Columbia (UBC)  Hospital Sleep Clinic, an infectious disease internist, two psychiatrists, and a neuro-ophamologist ... - I CALLED IT QUITS. I was almost convinced that I was the one who was crazy and not the doctors who could completely ignore my symptoms.

However, I did give it one last effort to be cured of my supposed problem (a hypochondriac) by visiting a psychologist at the University of British Columbia  (UBC) Anxiety Clinic. It was this psychologist who observed one of my episodes of altered consciousness. She told me that I had something far more serious than fibromyalgia and depression and I needed to see a neuropsychologist at the university. I told her I would rather not know if I had MS or something like it but she talked me into getting tested by a neuropsychologist.

Lo and behold, it was this neuropsychologist who picked up on me having lupus. She told me I looked like the CNS  (central nervous system) lupus patients she treated at  UBC Hospital. She said that I needed to be well -treated for depression before she could do the testing. (I had been taking antipressants to no avail but she thought I should be given higher doses). Depression goes with CNS Lupus because the blood supply to the brain is reduced by inflamed blood vessels. 

She did write a letter to my family doctor suggesting that I be tested for lupus and be referred back to rheumatologist who treated lupus patients with central nervous system disorders (CNS).

My family doctor started lupus testing right away and she referred me to a rheumatologist. Because there was a significant delay in being able to see the CNS specialist she also referred me to see this other rheumatologist. He was one who wrote good reports and was well-liked by her patients.

I am quite sure that if I had been in the United States I would have died many years ago. There is no way I would have been allowed so much access to the medical system. Some of you may think if I had gone to the US it would have been found much earlier. However, I was aware of a special clinic for vasculitis at John Hopkins Medical clinic and I did try to make an appointment there. My case was reviewed but they did not think I would benefit from seeing them because they did not think it was clear I had vasculitis.

Well, I can tell you it does make a big difference which doctor you see. The first rheumatologist  I saw after the positive lupus tests told me that he could not treat me without me undergoing a brain biopsy. My neurologist said the test was only 50% accurate, risky, and that I would receive the same treatment whether I had vasculitis or CNS lupus. When the rheumatologist told me that I just had to accept that nothing could be done for me, I changed to the rheumatologist with CNS lupus experience.

I am so lucky to have this rheumatologist. At first I was reluctant to go back to him as he had told me that I did not have fibromylagia and it was simply a sleep problem. His comments about being out of shape because I  had given up  running made me angry, too. However, he was the one who knew that MRIs could be misread. He knew the best radiologists for reading MRIs of the brain were the specialists at Vancouver General.  Hospital. He arranged for the VGH radiologist to read my two MRIs that I had paid privately to have done. 

It was incredible that the first two MRIs taken about 5 years before had been misread and those lesions had been on my brain for years.  I had another couple of MRIs done within a few months and the doctors noticed the number of lesions were increasing. One count was at more than 25 lesions. These lesions were places in my brain where I had been deprived of oxygen and the white matter of my brain had died.

I am a believer in brain plasicity - that is the brain's ability to develop new pathways to work around the damaged parts. The neurological testing I have undergone over the last several years doesn't show a significant recovery. However, I am not getting worse and I am just really greatful that I am doing as well as I am!

In my next blog, I am going to talk about the ways that lupus is diagnosed and why my situation is not that uncommon. 

DEFINITIONS:

internist - a doctor with 3-4 years postgraduate training who focuses on the prevention and treatment of adult diseases

rheumatologist-  an internist with an extra four years of medical training to treat arthritis, certain autoimmune diseases, muscle skeletal pain disorders and osteoporosis. 

 

cardiologist - an internist who specializes in treating heart and blood vessel problems

gastroenterologist - an internist that specializes in the treatment of disorders of the gastrointestinal tract

MS specialist - a neurologist who specializes in treating people with Multiple Sclerosis

neurologist - an internist who has trained in the diagnosis and treatment of nervous system disorders, including diseases of the brain, spinal cord, nerves and muscles.

neuro-opthamologist- practises the subspecialty of both neurology (brain and nerves) and ophthalmology (eyes) to treat a variety of eye disorders caused by or associated with neurologic diseases, such as multiple sclerosis, strokes, and brain tumors.

fibromyalgia - a widely misunderstood condition that causes widespread pain and fatigue 

neuro-psychologist-  a psychologist with specialized training to test the structure and function of the brain as they relate to psychological processes and behaviors.

vasculitis - a disease that causes inflammation of the blood vessels

MRI ( magnetic resonance imaging) - a test that uses a magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body