Crazy pregnant lady strikes back....

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 CFSi since she was 18 yrs old, so I suspect my problems started in the womb. I was born with food allergies, asthmai and eczema...off to a good start! As a child I used to end up with bronchitis and sinusitis/upper respiratory tract infectionsi every winter and this continued through my teens. One course of abxi 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 EBVi 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 diseasesi 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 tinnitusi. 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 Cpni....nonetheless I was put on a trial of abxi and I reacted...so here I am. The not-so-crazy pregnant woman strikes back! Currently I am one month into Doxyi 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.

 

 

Comments

Good for You!!!

Thank goodness for Dr. Powell. He saved me! Today I am well because of him--and a whole lot of work on my part. Keep to the plan and you will get well. I admire your tenacity and good humor. I also had to fly to see him but nowhere near as far as you!!

Keep on track!

Raven

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Thank you everyone for

Thank you everyone for reading my story and replying. It's wonderful to know I have the support of people who have been there or are still going through it. Its also reassuring to know that this actually works...sometimes it feels a lot like I am still flailing in the dark. I am not sure about tenacity - I'd say 1 part stubbornness to every 4 parts desperation. In retrospect mostly stupidity for continuing to spend a fortune seeking answers from a bunch of galahs (as Ladybug so rightly described them). Still, we learn. I am supposed to go back this month for a follow up MRI and appointment - I will certainly not be doing so....ever again. I'd rather spend my money on abxi....or a nice cup of coffee and a blueberry muffin! Much more conducive to healing :-) I look forward to being able to help others in the future as you are all helping me. And being able to blog about improvements and how fantastic I'm feeling when the day rolls round :-)

It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)

CFSi/FM (2001); 'probable' MSi; Cpni; EBVi; HHV6; Chronic sinusitis/bronchitis/allergies

 

Welcome aboard!

Welcome aboard, Not-So-Crazy Kate – it is wonderful to read your blog and to know you have begun!  Yes, you have real hope now, and that is the key.  It may be wretched and awful for a while, but it really will get better.  Your little one doesn’t know it yet, but she does have a truly amazing mother.

Some doctors really are galahs, aren’t they?  (Aussie slang for idiot.)  I have a picture in my mind of your former neurologist being made to sit and repeat, over and over again, “I am a silly doctor, I am a silly doctor.” 

As for your pain specialist and his suggestion that issues with your sex life might be contributing to your problems, I think he needs to get a grip on himself. 

I am also looking forward very much to your getting better. 

All the very best,

Ladybug 

FM & chronic myofascial pain 2000; Cpni; EBVi; lead poisoning; CAPi since Jan 2009; Flagyli pulses & Azi M/W/F from Mar 2009; now also Cymbalta; Rivotril; Low Dose Naltrexone; Doxyi.  Pain-free and heading upwards again.

"As for your pain specialist

"As for your pain specialist and his suggestion that issues with your sex life might be contributing to your problems, I think he needs to get a grip on himself."

Thanks for the mental picture of this man gripping himself Ladybug...Laughing

Kate you have an incredible collection of galahs to add to our very long list!

speedbird

KateYou have found us - and

Kate

You have found us - and your story is the perfect example of one of this amazing family.  So many of us have gone through our version of your struggle, but I must say, yours is extreme  even for here.  I am reading a fascinating book - Deep Survival.  We are not lost or in the mountains with a broken leg or in the Atlantic, but your story comes close.

I am looking forward to your getting better.  We all share our experiences to help each other.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.

Oh, my goodness!  How I

Oh, my goodness!  How I admire your tenacity, in the face of everything you've been through.  My one negative experience in an infectious disease doctor's office was enough to flatten my self-worth for many, many days.  You're amazing!

Keep up the blog!  You'll be surprised at how much you'll forget, as your health improves.  These days, I can barely believe I was falling daily on the same stair in the same stairwell at work, several times each day.  Now, it's just an amusing story and hard to associate it with my 'real' life at all.  I wish the same for you - soon!

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

very similar

I have had a very similar experience. Unfortunately I was never able to have children- and I ignored a lot of symptoms for many years. I spent most of my life in a brain fog. Yet, my searching for answers did lead me to a satisfying career working in the natural medicine and nutrition field. I think people with chronic illnesses are the bravest people I know!

Robiroo