I believe my second pregnancy triggered my dermatomyositis. Amelia was born 24th February, 2006. I was diagnosed with dermatomyositis 22nd August, 2007 and admitted to Royal North Shore Hospital.

It is hard to pinpoint when it all started. I had thought the first symptoms were mechanics hands, which I definitely had by Easter 2006. However, a friend of mine recently reminded me that I collapsed at the local school early in my pregnancy with Amelia and then I remembered that I had had a really severe sinus infection at that time. Perhaps the search for answers only raises more questions but it has been important for me to understand what I’ve been through even if I will never come to know why.

The first symptoms I noticed were the mechanic’s hands, characterised by hard, tight leathery skin which cracked and peeled on my fingers. I was certainly having trouble by Easter 2006. My fingers were covered in cuts and several layers of skin had peeled away looking like I’d dunked my hands in acid. These symptoms were diagnosed by a number of GPs as contact dermatitis, yet despite subsequently wearing gloves for all household tasks and even avoiding touching plain water, the symptoms did not improve. I did end up applying sigmacort 1% ointment along with paw paw ointment and wore cotton gloves and had dramatic improvements, however, after a month it started to deteriorate again. In hospital, was prescribed Diprosone Cream and continued using paw paw ointment. Hands improved dramatically again. Had developed a real hard plasticy feel but no cuts. A month after treatment began, my skin deteriorated again. Skin turned leathery and hard then peeled despite applying moisturiser. Skin stinging and sensitive. The thumb and index finger on my right hand is worst affected and I have difficulty straightening my index finger.

Initial blood tests were inconclusive. My Anti Nuclear Antibodies (ANA) levels were 200 around June 2006, which was borderline and I tested positive for JO1. There was talk of Lupus, however, the print out from the blood tests said that 30% of cases of polymyositis or dermatomyositis test positive for JO1. However, after the CPK test was normal in December and these diseases were taken off the table.

The muscle weakness was difficult to identify. The symptoms were seemingly vague and I really struggled to put my experiences into words. We live in a flat suburb in a house with only a couple of steps so I wasn’t exposed to situations where my muscle weakness was being challenged on a regular basis. I was very fatigued but I had two small children and Amelia was waking 1-2 times a night and breastfeeding. I also had the hydrocephalus, which is also causes fatigue. These were sound explanations.

A dicky knee was the first concrete sign of muscle weakness. My kneecap got stuck a few times in bed and I couldn’t bend my knee. I ended up with quite a lot of pain in both knees and it hurt to stand up or sit down. Knee xrays didn’t show any damage and I was diagnosed with mild osteo arthritis end Nov 2006. I started taking glucosamine 1000mg and the pain went away. I had been walking several times a week and also swimming at the beach and with arthritis I was told “use it or lose it”. There were days where I felt I might be knocked over by even the mild conditions at our beach. Used the beach for hydrotherapy. Saw physio who noticed muscle weakness but then seemed to think I had depression. Then a shunt blockage was explored. Symptoms were similar to MS but this was eliminated by an MRI. Lower back was explored. Saw a chiropractor. He gave me a head to toe examination and found chronic muscle weakness. Mentioned situation to kids paediatrician and he noticed a rash on my face and suggested Lupus. Saw neurologist who said it wasn’t the shunt. Not neurological and found grating kneecap and clunk in left leg. He said it was rheumatological. Made an appointment to see Prof Les Schreiber after Dr friend suggested seeing someone attached to a research clinic. Meanwhile saw my uncle, a dermatologist at my cousin’s wedding and briefly showed him my hands in poor lighting and he recognised the red rash across my knuckles or rainbow hands, characteristic of dermatomyositis. He rang me the next day and went through my blood tests. He ordered more blood tests on the Tuesday and rang me the next morning to say I had dermatomyositis and that I was very sick and he’d arranged for me to see Dr Jason Balgi at Royal North Shore and to take my toothbrush as he thought they’d admit me. I left Royal North Shore hospital 2.5 weeks later and went to Mt Wilga for rehab for a further 4 weeks.

First Bloodtest

17th October, 2006
Knee xrays. Nothing found.
My knee problems had started out with my left knee locking in my sleep. My knees felt weak and it felt like the muscles/tendons weren’t able to hold the knee together. Felt like to kneecap could fall off. I was also getting weird sensations in my thighs, like twanging rubber bands. Mum has been warning me for years that I’ll have trouble with my knees if I don’t lose weight. I had a lot of pain in my knees and avoided sitting down and getting up.

Dodgy Bloodtest Results
I went back to the doctor about “the dermatitis” on my hands. My skin was dry, leathery and cracking. It looked like I’d dropped acid on my fingers. He said I had housewives hands and to avoid chemicals and wear gloves. He thought the cortisone cream I had been using was too strong and burning the skin off my hands. He suggested using nappy rash cream instead. I also asked him about the results of some blood tests I’d had done. Mum had told me that she hoped I didn’t have Lupus. I thought she was worrying about nothing and was a joke about that with the doctor, however, I noticed that his face had changed while he was reading my results and he was looking quite serious. I got worried. He told me that my ANA levels were 200 and I was positive for JO1. ANA stood for anti-nuclear antibodies and is an indicator for lupus, arthritis and autoimmune diseases. I was right on the recommended level. I didn’t know what JO1 was all about and in a sense it looked weird and obscure and on another level was a worry. A footnote on the blood test results said that 30% of cases of polymyositis and dermatomyositis are positive for JO1. I looked them up on the net and I didn’t like what I read. One person with polymyositis said you were better off dead. That didn’t sound good. I was very worried.

Knee Xray.

27th November, 2006   Appointment with Rheumatologist
I was very concerned about having polymyositis. Rheumatologist  looked at my xrays and said I had mild osteo arthritis but we needed to have a blood tests to check for CPK just to eliminate polymyositis. He said it was very rare and virtually that I didn’t have it. He asked if I had any rashes and I said no. Didn’t think of the “dermatitis” on my hands as a rash. He said he could give me injections in my knee if the pain was bad. There was no mention of needing follow-up visits.
I found walking to the appointment totally exhausting. My legs were very weak and I felt near collapsing. I had to walk quite a distance up hill etc. I had to really push myself and did wonder about needing a disabled sticker for the car but thought I was just being lazy.

Christmas 2006
Photographs of my hands show the mechanics hands but no sign of the rainbow hands across the knuckles. Skin tone is normal.

16th January,2007
Started physio at Woy Woy Hospital. Symptoms sore knees, lower back and neck. Physio notices I am “floppy” with posture and balance problems. Suggests I’ve been using pram as a walking frame to support myself. Pram camouflages balance problem.

Sunday 18th March 2007
Noticed great difficulty going downstairs. We had lunch at Marie & Abe’s place. They have a split level home with multiple staircases. Geoff had to really help me down the stairs when I left. I remember being quite shocked that I couldn’t do it. Stepping down, my legs felt very weak, wobbily and unstable. I also had trouble going down the hill. This was a warning something was quite wrong. Had an appointment with my GP the following Wed.

24th April 2007
Nerve conduction study on arms confirms bi-lateral carpule tunnel syndrome.

31st May, 2007
Arthritis Seminar at Amcal Chemist. Found out a lot more about arthritis. Confirmed to use it or lose it so increased exercise.

14th June, 2007
Went to Queensland for Papa Haebich’s birthday. Found it exhausting to hand cake out to residents and felt like falling over as they wheeled residents passed me. Collapsed against the car in the car park and couldn’t stand up. Mum told me that I had to keep going but I couldn’t.

3rd July 2007
MRI Brain at Gosford Hospital. I parked at the top of the hill outside the high school and was exhausted walking to the hospital. I felt I was going to collapse. I was staggering along. Wondered about getting a disabled car space but thought be careful what you wish for as I didn’t want to end up in a wheelchair and I also knew about not being able to walk far being a requirement for the permit and I wanted to keep active and fight what I thought was arthritis.
10th July, 2007.
Picked MRI up.
After having MRI started wondering whether I had MS. Looked it up on the Internet and recognised some of my more usual symptoms. This included footdrop. I had noticed footdrop on my left foot and had scratches on top of my left boot. I was also dragging my left foot. I was also lifting my legs with my hands to cross my legs  and lifting my legs into the car. A woman with MS specifically mentioned these symptoms leading to her diagnosis. It sent a chill down my spine. I spent at least a night on the net reading about MS. I realised that a brain MRI would diagnose MS and that my neurologist could test me for MS while checking the shunt without raising my suspicions and stressing me out. MS had been eliminated during the hydrocephalus diagnosis process but that was 10 years ago and it had been 4 years since my last MRI. I was pretty much convinced that I had MS at this point and Geoff and I had a real heart to heart about it all where we pretty much reached a point of acceptance about it. Accepted the very real possibility that an electric wheelchair wasn’t too far round the corner.
I was sorely tempted to open up the MRI and read the report to see whether or not I had MS. I didn’t know whether to put myself out of my misery by finding out I didn’t have it or whether to wait the week until I saw my neurologist and have an extra week’s grace of not knowing I had MS. I knew once I had the diagnosis that there would be no turning back. I thought of a friends’s partner confined to an electric wheelchair. I thought of a school friend who has had 3 kids since being diagnosed with MS. I thought of cellist Jacqueline Du Prey who died of MS and the sculpture my cousin Lucy did in her memory “A Cellobration” for her HSC art major work. There were thoughts of electric wheelchairs and people movers and also new treatments.
Geoff was quite firm about waiting until I saw my neurologist before opening my MRI results. He felt that if it was bad news that it would be better coming from him so that he could explain it to me properly and answer my questions. He didn’t want me getting on the net and freaking out.

18th July, 2007
It was a day of medical appointments. The kids both had appointments with their paediatrician in the morning. I mentioned to him that I had been very ill. He noticed a red rash on my face and suggested it might be lupus.
My appointment with my neurologist was at 4.00pm. I wondered how he would deliver the bad news. He has been my neurologist for 10 years and we have a fantastic rapport. My appointments are usually fairly light hearted and he talks about how well I am we do a heel toe and basic neuro tests. I thought he would find it really hard to tell me that I have MS. I decided that if he was smiling, everything was fine. Well, he was smiling and he told me straight out that the shunt was fine and I didn’t have MS. Relief!!!!
Problem…didn’t have MS but still had symptoms. Asked him to check out my left knee and he felt a definite pop and clunk. Spoke to him about what rheumatologists do and thought that was my next port of call. We also discussed my history of lower back pain and suggested spinal xrays. Now thinking its Lupus.

Appointment with GP
Went back to GP. We spoke again of knee pain versus muscle weakness. I pointed to a footstool in her office and told her that I couldn’t sit on that and get up again. She said to show her. She gave me a second referral to a neurologist in Gosford and told me “There’s nothing more I can do for you. I’m sending you to someone smarter and more intelligent than I am”. Tell her I said this is weird.”
I asked her to repeat my ANA tests. I remembered that the last tests had said to retest in 6 months. I remembered how a friend’s ANA levels had shot up from 400 to 1600 in a short period so any change there would provide a clue and if so, off to the rheumatologist, not neurologist.
GP ordered more knee x-rays, a knee scan, spine x-rays and nerve conduction studies on my knees.

I tripped over the Broom
I’m not sure where this quite fits in the timeline. I tripped over the broom in the greenroom and crashed onto the floor, of course landing on my sore knees. I was lying on the floor for at least 15 minutes  before I could even think of trying to get up. Amelia was crying very  upset as she saw me fall. Jonathon was outside and didn’t know anything was wrong. I couldn’t get up. I just had no strength in my body. Eventually, I managed to lift myself up onto my bottom but I couldn’t get up any further. I was starting to panic and was thinking I needed to call an ambulance. It didn’t make any sense that I couldn’t get up. I wondered if I was being a bit melodramatic as only old people have falls and can’t get up again. I remembered how Mama Haebich had had a fall and Papa Haebich had fallen trying to pull her up and they had both been rescued by the meals and wheels lady. I decided to call Geoff to see if he had any ideas about how to get up off the floor. Fortunately, the cordless phone was within reach and I could call him. He offered to come home from work but that would take an hour and a half which wasn’t much use. We decided to pull myself up on a chair. I managed to pull myself up pushing through my elbows. Once, I was up I was fine and could get going although my confidence was shattered. I didn’t understand what had happened. Why couldn’t I get up off the floor?? Was I safe at home with the kids? Things were getting really bad. I spoke to a friend and intended to give her a key in case it happened again.

Mum remembers Backtrouble & My Symptoms
After months of wondering, Mum remembers having similar symptoms to me when Geoff and I were getting married and she had had an appointment with our then chiropractor James at 10.30pm the night before the wedding she was in so much trouble. Like me, she was unable to roll over in bed and was lifting her legs into the car. I couldn’t believe that Mum had had the exact same symptoms as me and hadn’t said anything. I had gone through hell thinking I had MS and all I needed was a chiropractor. At least I had some hope and a new direction.

Monday 6th August, 2007
See Bernard Mum and Dad’s chiropractor. He gave me a very thorough examination from head to toe and tested my joints and muscle strength. Bernard was the first person to really test me all over. He ordered some x-rays of my spine. He commented that some of my muscles were very weak but that some of them were quite good. He was quite reserved about whether he could help me that if I had a chiropractic problem he could do something but we were both thinking there was something else going on that was causing the muscle weakness. I had the x-rays done and the technician had to help me off the table I couldn’t get up.

Saturday 18th August, 2007
I attended my cousin’s wedding. My goal was to dance at the wedding and had noticed some improvements after seeing the chiropractor. When I was getting dressed, I noticed that I had lost a lot of weight, which explained why my trousers had been falling down a lot recently. Had lost about 8 kilos in 1-2 months. I had a joke with Geoff that if anyone comments on me losing weight that I’d say “that’s what happens when you have a muscle wasting disease!” Strangely, I actually laughed. I was a bit surprised about the weight loss as I’d never lost weight without trying before although I’d had a persistent stomach bug for a couple of months.
I managed to dance, albeit very awkwardly with my cousin at the wedding. Had a lot of trouble getting out of chairs and had pain in my knees again.
Saw my Uncle who is a dermatologist and very briefly showed him my hands in poor lighting. Wasn’t looking for a consultation but did want to show him after speaking to him over the phone.

Sunday 19th August, 2007
My Uncle rang me to follow up his observations of my health at the wedding. He aksed me about my blood tests and asked me if I wanted him to move forward my appointment with Prof Les Schreiber. I only had to wait a week and wasn’t concerned but then wondered whether I needed to be. Uncle said he’d order more blood tests and to make sure I did them urgently.

Wednesday 22nd August, 2007…Diagnosis.
Uncle tracked me down at my parents place and told me “You’re a very sick girl. You’ve got this disease called dermatomyositis and I’ve made an appointment for you to see Dr Jason Balgi at RNS. Take your toothbrush as I don’t think you’ll be coming home. Your parents will need to take the kids.