I have decided to create a blog so that I am accountable to someone...well a bunch of people actually. And because it's easier to ponder on a blog than to be a nuisance and the newbie posting a million questions in the forum!
I've been sick since I can remember. My mother has had bad CFS since she was 18 yrs old, so I suspect my problems started in the womb. I was born with food allergies, asthma and eczema...off to a good start! As a child I used to end up with bronchitis and sinusitis/upper respiratory tract infections every winter and this continued through my teens. One course of abx was never enough...it got to the point where I was having to take two or three full courses to rid myself of infection, but I still ended up with them three or four times a year.
My first experience (that I can remember) with neurological symptoms was when I was 12 and had burning, tingling feet that lasted a few weeks. At 15 I had a week or so of vertigo. At 19 a buzzing, tingling sensation in my right calf that graduated over a few weeks to both legs and up my trunk (and tongue, oddly enough), along with headaches. This was my first experience with a neurologist, who said I was suffering migraines and I needn't worry.
At 18 yrs, I came down with EBV and I never really recovered, ending up with a diagnosis of CFS. I was studying physiotherapy at uni at the time. At 20 yrs I was diagnosed with cysts on my ovaries. Overall, not a picture of gleaming health!!
Fastforward to the end of 2010. I had just fallen pregnant after 6 months of fertility treatment and had started to experience extreme fatigue and bladder issues (pain, retention, hesitancy, extreme frequency etc). Of course this was passed off as pregnancy by a number of doctors. The bladder problems worsened and after about 10 negative urine tests I was sent to an urologist. Verdict...pregnancy. I expressed my concerns that I have had pregnant friends before who don't get up 20 times during the night to go to the bathroom and certainly not at 12 weeks pregnant!! I was brushed off as overly anxious and told "pregnancy does strange things to your body". I questioned IC and got told that autoimmune diseases always go into remission during pregnancy so there was no way I had it, and there was no more she could do for me. I got referred to a second urologist who said the same thing.
At about 5 months pregnant I started to experience a whole host of neurological problems that seemed to worsen by the week. Burning skin, tingling (that started in the exact same spot - right calf - as in my teenage years) and spread over every inch of my body, numbness, tremors, muscle twitches/spasms, difficulty swallowing, cognitive dysfunction and tinnitus. Oh, and a burning neural pain like i'd never experienced before (I've had 2 spinal fusions so I'm no stranger to neural pain). And so began the trips to the neurologists. Neurologist 1 brushed me off as anxious before he'd even examined me. Made me walk in a straight line, tested my reflexes (which were exaggerated but "that's normal in a petite young girl like yourself", shone a torch in my eyes and declared me healthy in every way. In the letter he dictated (in front of me) to my referring doctor he said "Kate claims to have 'so-called chronic fatigue'....I would say that she is just run down and would do well to get her anxiety under control". Neurologist 2 said much the same - my symptoms didn't match MS as they were too global and ongoing and not appearing in the typical attack and remit form. I explained my history and he said that I was too young for it to be related, and that I was pregnant, and pregnant people don't get MS. And besides, pregnancy does strange things to your body (he obviously went to the same medical school as the urologist!). He ordered an MRI which came back negative, and did much the same tests as the first neuro. Despite a positive L'Hermittes and exaggerated reflexes, he made me sit and repeat after him "I am a well girl" over and over before he would let me leave. How patronizing!!! The pain management specialist was even worse - telling me that I was catastrophizing everything and that anxiety was my issue. He ran through the battery of physical MS tests, saw some tremors and said "what's that?". I explained I had been getting tremors and he sent me away with a referral to a psychologist and antidepressants, not without first suggesting that maybe issues with my sex life, or childhood or family were causing the problem. Neurologist 3 (the last neuro I will EVER visit) said she didn't think I was anxious (at last!) and that I seemed practically minded, however she didn't know what was causing my symptoms as bladder problems and muscle twitches don't occur with MS (I am not sure this one even WENT to medical school!). I requested a lumbar puncture, to which she at first protested but eventually agreed to (i think to get rid of me once and for all). She wrote on the referral form "NOTE: patient requested lumbar puncture"...and surprise surprise it came back positive for oligoclonal bands in my CSF (she then wrote a letter back to my referring doctor that said "after referring Kate for a lumbar puncture, as I suspected it came back positive"....ha!). I was sent away with advice to eat well and not stress, and told there was nothing that could be done.
At this point I couldn't walk further than one grocery aisle, and a colleague of my musculoskeletal therapist who had been managing my pain/spasms linked me up with another Australian patient of Dr Powell's. In October last year I made the long trip overseas with my then four month old little girl to see Dr Powell - that man is just wonderful. I tested positive to HHV6, EBV but not Cpn....nonetheless I was put on a trial of abx and I reacted...so here I am. The not-so-crazy pregnant woman strikes back! Currently I am one month into Doxy 200mg, Zithro 250mg MWF and Rifampin 300mg and feeling worse than ever - awful muscle, joint and bone aches, numbness, weakness which is new to me, bladder pain, headaches, FATIGUE!!! But worse than ever with hope is better than terrible with no hope right? I hope I can still say that in two months time and have the courage to stick this thing out.
This is a wonderful, one-of-a-kind group and I admire every one of you for continuing to fight. Thank you to everyone who has responded to my questions so far....there are sure to be many many more.