Timeline of Symptoms, Possibly Relevant Information, and New Doctor Update

The following is a timeline of the symptoms I've been dealing with for the past 11 years, as well as information I think may be relevant to diagnosing this illness. I'm giving this to my doctor; it is complete, but since this blog is a record open to my family and friends, I have deleted some of the more personal symptoms. If you think my story might be helpful to someone going through a similar ordeal, however, I will happily be forthcoming through email.


1. I have had all of these symptoms for years:

fatigue (about 11 years; constant, but worse some times than others; after any expenditure of energy, it is much more severe for an inordinately long time.)
muscle pain and stiffness and knots that never go away (about 11 years; extreme and getting worse; constant, but worse some times than others)
joint pain (worsening over the past 5 years or so; neck [always], fingers [often], hips [always], toes [often])
TMJ (6 or 7 years)
excruciating shooting pain from lower tooth; nothing shows on dental x-ray (3 or 4 years)
night sweats (about 3 years)
deleted
odd feeling shooting down arms (intermittent over the past 11 years or so, initially off and on for a few weeks or months, now happens frequently; numb but painful and weakens my grip)
forgetfulness (6 years or so; I will forget everyday words and tasks, like what the remote control is called or what to do after I've put the car in park [turn off the key].)
trouble concentrating and comprehending (3 years or so; I have to read and reread articles and work of the type I used to understand immediately.)
muscle cramps (3 years; legs, toes, and ribcage; at one time, I had low potassium, but it’s fine now and I still get the cramps.)
clumsiness (3 years; I have always been clumsy, but for the past few years I have definitely walked into objects and door frames more. It's as though I misjudge the clearance I need. I also drop more and have trouble typing that I did not have before.)
more frequent urge to urinate (2 or 3 years; deleted)
trouble sleeping (as long as I can remember; insomnia and less restful sleep at night than I can get if I sleep in the daytime)
dizziness and racing heart when taking hot baths (3 or 4 years; largely alleviated since my vitamin D level has come up)
random shooting pain in odd spots in my body (2 or 3 years; intense and short lived)
bone pain (2 or 3 years; began as sharp temporary pain but now includes aching)


2. The following are more recent:

vertigo (one severe bout a year ago; it lasted for three days and sometimes made it impossible to stand or walk. It caused nausea and vomiting.)
hot flashes (frequent only in the past year)
deleted
deleted
peripheral vision problems (past year or so; I will think I see a flying insect, mouse, or shadow at the edge of my field of vision, only to turn and realize nothing is there.)
shortness of breath (past year or so; sometimes after exertion, but sometimes not; I sometimes feel as though I'm breathing in enough air but am not getting enough oxygen)
burning in thighs with any kind of exertion such as climbing stairs (past year or so)
alcohol intolerance (past year)
muscle twitching (past few months; mostly at night and in the muscle groups that cause me pain)
using the wrong words (past few months; I will say “expensive” when I mean “rich,” or “cut” when I mean “tear.”)
more sensitive to sunlight and loud noises (past year)


3. deleted, involving acne and other hormonal issues


4. Within several months of the onset of my symptoms, I had an extremely itchy, non-contagious body rash.


5. I’ve had several blood tests and a brain MRI and all tests have been normal. I have no tender points.


6. Earlier this year (2009), a blood test showed that I had low vitamin D. I have since gotten my vitamin D level up, but my symptoms remain.


7. I did see a neurologist this year; he looked at my MRI and told me it was not possible for me to have MS. I asked about the MS Society’s assertion that 5% of MS patients have negative brain MRIs and was told, “The MS Society lies.” I asked about the possibility of spinal lesions and was told that spinal lesions would only be a possibility with a symptom like vertigo. I responded, “It’s on the list of symptoms I just handed you,” and the neurologist simply repeated that I could not possibly have MS.

The neurologist also told me that the neurological exam he was giving me was standard and complete, but I am certain that it was neither. It lasted less than 10 minutes and did not include any balance test that required me to close my eyes.


8. I saw a rheumatologist after I saw the neurologist. He told me that I could not have chronic fatigue syndrome unless I had endured a serious trauma (his example: being raped as a child). He asked if I had several symptoms, among them bruising and fluid retention. I answered yes to those two particular symptoms and also told him that all my symptoms are worse when I am ovulating or menstruating. He went on to tell me I had no symptoms related to lupus.

The rheumatologist went on to tell me that he believed my problem was in my central nervous system; however, the letter from his office that ended up in my medical file speculated that perhaps I have chronic fatigue syndrome or fibromyalgia. I believe the letter was probably sent by the nurse practitioner I saw the first time I visited the office; my full consultation with the rheumatologist was a follow-up appointment made after I completed my prescription for vitamin D.


9. No one has suggested further testing, but they have been willing to prescribe muscle relaxers and antidepressants. This is unacceptable to me. Muscle relaxers do not relax the muscles that are tense, but they do increase my fatigue exponentially. The only depression I have is related to having chronic pain, cognitive difficulty, decreased quality of life, and little hope of change. In short, any depression I deal with is the result of this illness, not the cause of it.

A small percentage of patients with rheumatoid arthritis, lupus, multiple sclerosis, and Lyme disease all consistently test serologically negative, but no one has yet seemed willing to consider the possibility that I might be one of these patients. Unlikely or not, I have a real, physical illness. I need to know what it is so that I can begin a course of useful treatment.

I have read that false negatives are more common in Lyme disease tests than they are in autoimmune tests. Before my symptoms made it impossible, I was a very active person who spent a lot of time in the woods. Because of the higher false negative rate of the Lyme tests and because of my history of possible exposure, I very much want to have a C6 Lyme Peptide ELISA (C6LPE), a Western Blot from a laboratory that tests all bands, and a Polymerase Chain Reaction (PCR) test.

Because of my cognitive difficulties, nerve pain, vertigo, and balance issues, and because I have an aunt with multiple sclerosis, I would also like further evaluation for multiple sclerosis, including a spinal MRI, lumbar puncture, and full neurological exam.

UPDATE: My new doctor was better than any I've ever seen (his nurse, however, was ignorant and dismissive - told me I couldn't be in as much pain as I said I was because I didn't look as though I was). The doctor listened, took me seriously, and was happy to order the Lyme tests I wanted (though he is holding off on the others until the bloodwork comes back). However, what my doctor ordered does not matter to the laboratory. The lab does not offer the C6 ELISA, only the standard ELISA. And though my doctor specified he wanted the Western Blot regardless of ELISA results, the lab refuses to do either the Western Blot (its version of which does not include all bands) or the PCR test without a positive ELISA. I offered to pay out of pocket for these tests and was flatly told the laboratory would not run them under any circumstances without a positive ELISA. (The entry entitled "The Lyme Controversy" explains why this refusal to test is so egregious.)