by Jon Anda

On Friday April 17th 2009 I was diagnosed with CIDP.

This came three days after being admitted to Nelson hospital as an emergency patient by my doctor, after repeated efforts to see a neurologist had drawn less than the urgent attention I felt I needed.

It has now been two weeks since my diagnosis and hospital discharge. With time to reflect I now realise my road to CIDP actually started over a year ago all with a new pair of shoes. I'm 49 years old and this is my story.

March 2008 I purchased a new pair of good quality sports shoes and after wearing them for a few days I noticed they felt uncomfortable in the front section as if the toe space was made from hard rubber. I took them back to the shop and was shown a new way to lace them that would help keep my heel back and thus relieve the pressure off my toes. This new lacing technique did offer me some relief and I further accepted that I just needed to ‘break the shoes in’.

Little did I know...

July 2008 I noticed that, for a fit guy who lifts weights at the gym regularly four nights a week, my leg muscles appeared to have lost a little size and condition. I decided to work on my legs a little more to get them back to their former proportional specifications.

August 2008 On a cold rainy winter’s night I was driving to Nelson for dinner when I felt a cold clammy and numbing sensation in both of my legs from my waist down to my feet. It felt like cold water was being pumped through my legs, and even with the floor heater on full they still felt very cold. I was sweating up top and freezing down below. Thinking I must be fatigued I stopped and bought two muesli bars and a can of apple juice to boost myself up. This episode lasted about 6 minutes.

September 2008 I was standing on the tail-gate of my Hilux pick-up truck and jumped off onto the asphalt. Bang! I hit the ground with a bone-jarring thud that felt like I had jumped off grandma’s garden shed hugging a sack of bricks. “Bloody hell, what happened here!”.

The height from the tail-gate to the road is just a measly 89cm, or 35inches! At 6’ 2” I could have almost walked off!

I clearly remember thinking “Is this what it’s like to grow old?”

October 2008 I was walking down a ramp off my Hilux when I experienced a very unusual and unstable transition at the point where my leading foot met up with the level ground. This feeling of instability repeated itself several times over the coming months when walking down the same ramp. It didn’t hurt. It just didn’t feel normal either.

November 2008 I spent the day walking the Abel Tasman National Park track. After about 13km of walking in my still ‘very uncomfortable shoes’ I decided to walk the last 4km barefoot. This wasn’t much fun either, as I struggled to walk barefoot on the gravel track and “ouch, ouch, ouch” was muttered often. I clearly remember putting this barefoot pain down to the fact that I had soft ‘townie feet’ and I decided I would go barefoot more to get my ‘country feet’ back.

It was only as I got towards the end of the walk that I realised the track was almost entirely formed of sand. There is no gravel on the Abel Tasman coastal track…

December 2008 By now I had noticed my feet were feeling numb, tingly, and swollen. My fingertips were also feeling slightly numb.

I thought my balance might also be mildly affected - but I wasn’t sure.

I had just passed my commercial pilot licence medical renewal with no problems. Surely this can’t be anything serious? I'm good to go!

Then a friend of mine suggests I may have mercury poisoning due the amount of tuna I eat! Yeah right. I was beginning to wonder and worry…

December 17th 2008 Was my first doctor’s visit with my concerns about the growing numbness and tingling feelings in my feet and fingers. He reassured me it was probably nothing to worry about and scheduled blood tests and checked out my heart. He also did some reflex tests and I recall thinking at the time that my responses didn’t look particularly award winning. My blood tests concluded nothing out of the norm and my heart was good to go! He then referred me to a physiotherapist to investigate the possibility that I may have pinched a nerve in my back as a result of a snow boarding accident last winter.

So with 2008 coming to a close my feet hurt in my shoes. I thought I dribbled more in my sleep. I went to the toilet too many times at night and with more urgency in the mornings. My legs appeared to tire from walking up one flight of steps and my thigh muscles looked like they were getting smaller. I also remember waking up the day after any serious physical exercise feeling like I had been punched around the ring; On the other hand I still managed to go to the gym four days a week, I could hang off the end of my chainsaw in steep bush country for 4 hours straight, I could snowboard all day virtually without more than a toilet stop and I could ride my motor-cross bike non stop in the 5 hour Honda Iron Man motorcycle race. Nothing wrong with that!

I simply concluded that 2008 was the year I was physically ageing faster than I would have liked. I definitely noticed it, I definitely noted it, but I didn’t think I had enough wrong with me for anyone to take me too seriously. After all, some would say that at 48 I am not a spring chicken anymore.

January 7th 2009 I now felt the intensity of the numbness and tingling in my feet and hands increasing at a predictable rate. I had my first physiotherapy session and I was shown some back and leg stretches to improve my somewhat poor flexibility. By now I had also noticed the soles of my feet had appeared to become very ‘slippery’ when walking barefoot on carpet or dry grass. My feet just seemed to have lost some of their natural grip and traction.

January 12th 2009 My second physiotherapy session and nothing new here just the same painful leg and back stretches.

January 19th 2009 My third physiotherapy session and with no improvement in my health the physiotherapist wisely referred me back to my doctor saying he couldn’t help me.

February 23rd 2009 Was the week before my 49th birthday. It was back to the doctor for another round of blood tests and this time he also recommended I see a neurologist. I agreed.

February 2009 I felt the numbness and tingling increasing and extending up my legs and forearms in waves. I felt also the odd ‘twinge’ across my body - mostly in my arms, abdomen or chest.

I sometimes woke up at night with cramps in both my legs at the same time, which was something I had never experienced before. I made a note to get more magnesium in my diet to counteract the cramps. I also noticed that the all-over buzzing sensation I was experiencing was possibly being aggravated by heat such as taking a hot shower or a spa, and even warming up on the cycle at the gym.

March 27th 2009 I was driving home from Hanmer Springs and I accidentally stood on the gas pedal instead of the brake pedal. I then noticed that the brake pedal felt unusually distant under my foot. Pressing the brake pedal felt as if I was driving with a towel wrapped around my shoe, thus reducing the expected pedal feel.

Monday 6th April 2009 Was the first day I had difficulty walking. When I walked from my car to the changing rooms at the gym I noticed my gait was somewhat staggered. I also noticed one of my knees would sporadically ‘let go’. This caused me to lurch and sometimes flail my arms momentarily. To some it looked like I was a dancing drunk. That night at the gym a friend asked me jokingly “are you pissed?” I also didn’t manage to finish my gym session for the first time ever.

April 8th 2009 Back to the doctor I now felt I needed specialist help sooner rather than later. My doctor ordered a final round of blood tests and sent a letter to Nelson hospital requesting an appointment with the neurologist. He warned me that the hospital appointment could be a few months away due to the long waiting list and suggested I consider the option to go private, and I agreed; but with no private neurologist available in Nelson he referred me to a rheumatologist instead. When I received the rheumatologist’s appointment I was told my initial 30 minute consultation would cost me $250. Two hundred and fifty dollars for just 30 minutes! That’s $500 an hour for a guy who might not even be the right guy to help me! “And I am pretty sure I do not have rheumatism!” So, rightly or wrongly, I promptly cancelled that appointment and immediately returned to my doctor requesting I see a neurologist, and preferably a free one! About this time I also began emailing the neurologist’s secretary with my updated symptoms, asking that I be seen at the earliest available opportunity. I even requested that in the neurologist’s absence (at that time) that anyone there with some neurological expertise just read my communicated symptoms. To be honest, communication with them was pretty much one way traffic and right up to the day I was admitted to hospital I never actually received an appointment date .

Monday 13th April 2009 I started experiencing singular and multiple electric shocks today, mostly in my legs and feet but occasionally in my fingers and arms. The shocks were lightning fast and felt like a fish biting hard and fast at a hook. At first they were quite scary because they would strike without warning. Some multiple attacks lasted up to 10 seconds.

Wednesday 15th April 2009 I woke up with my body being wracked by continuous waves of uncomfortable tingling, cramping, numbing and electric shocks. I felt a warm burning sensation in my legs and walking was difficult, painful and unstable. My hips ached and my balance was somewhat disappointing. As I prepared for work I soon realised I now had more important things to sort out: My health. I had endured enough. I felt like I had been sliding along a wire cable for the past few months collecting new symptoms and losing none. I could now clearly see the wall coming and felt something not nice was possibly about to happen. I emailed both my doctor and the neurologist’s secretary again with my latest feelings and symptoms and once more headed to the doctor’s. He again rang the hospital and was told the earliest the neurologist could see me now was possibly still over a week away. My doctor then told me he was going to admit me as an emergency. It sounded extreme, but for the first time in months I felt relieved and happy that someone was finally going to see me. It’s important to remember that at this time I still didn’t know if I had a tumour growing in my brain or just a gorse prickle in my foot.

When I arrived at the emergency department they were expecting me. I spent the next few hours undergoing general, blood and reflex tests. I was then told I was being admitted to hospital.

I'm 49 years old, single, being admitted to hospital for the first time in my life, and nobody is telling me much. I was scared but very relieved to be there.

Thursday 16th April 2009 Today I met Dr Clark the neurologist for the first time and after he examined me he told me I was to have conductivity tests done the following day. A nurse later came into my room and told me Dr Clark is the “the man”, and that if anyone can get to the bottom of this he can. I was happy and confident she was right.

Friday 17th April 2009 Dr Clark came and took me for my conductivity tests. Conductivity tests sound much better than they really are. You get electric fence strength electricity pulsed into your nerves and joints right where you really wouldn’t want it. They fire it into your wrist, elbow, ankle and even the side of your knee. My results indicated poor nerve conductivity and Dr Clark then advised me that he suspected I had something called - CIDP. He said this theory would be supported by having a lumbar puncture and looking for elevated levels of protein in my spinal fluid. To be honest at that time I felt nauseous and I didn’t hear much about CIDP, blah, blah, blah… because I had locked onto the bit about the lumbar puncture. That just plain didn’t sound very nice. The lumbar puncture was scheduled for that afternoon and actually wasn’t as bad as I expected. They took three vials of a clear spinal fluid from my lower back and the results indeed indicated an elevated protein level of .86

I was finally given the official diagnosis of CIDP – Chronic Inflammatory Demyelinating Polyneuropathy. Dr Clark informed me that I'm one of about 20 people with this type of disease in Nelson.

Dr Clark almost immediately offered me a couple of treatment options:

I could spend a further 4 days in hospital having IVIG treatment (a drip) or I could try a home-based treatment using a daily dose of 50mg Prednisone (a corticosteroid) and 50mg Azathiroprine (an immunosuppressive). I was also told it would take up to three weeks for the medication to have any significant effect. I opted to go home and was discharged on Saturday morning with pills in hand.

April 26th 2009 I have now been home and on my medication for 11 days. Some days are good and some days are not so good. Overall I have seen no overall improvement in my health and I can still feel the fish nibbling at my right foot as I write this.

April 28th 2009 Today was my first post-hospital follow-up with my doctor, which went well. We discussed my medication and booked the scheduled monthly blood tests. I also think he now has a better appreciation of CIDP and what it is, how I feel, and what I have endured. After the doctor’s I hobbled into my local pharmacy to seek some ‘doctor-approved’ Nurofen Plus. Obviously due to my somewhat unsteady gait, I was promptly refused access to purchase Nurofen Plus, which is a non-prescription codeine based pain reliever. Phooey! The pharmacist told me she only supplies Nurofen Plus to people she knows. Upon her refusal of my immediate and genuine offer to develop a sincere and lasting friendship I had to hobble back to the doctor to get written verification of my condition. Back to the pharmacy. I received a sincere apology from the pharmacist for her “bad error in judgement” and I finally got hold of the only pain relief for CIDP that I posses.

Why me?

To be honest with you I have never actually asked myself that question and it’s not even important to me. What is important is that I accept I have CIDP and that I get on and do the very best I can to manage it so I can get back to my normal healthy, active life.

So how did I get CIDP?

I'm told that CIDP can possibly manifest itself from an infection of some sort. Me get sick? I don’t smoke, eat junk food, or even drink alcohol! I did go to the gym 4 days a week and I will deliberately get physically active any chance I can. So if I didn’t get sick very often then there is nothing much I can tell you here. Or is there… Well, I do clearly recall this happening on more than one occasion: My gym is 45 km from home. I would drive there at 5pm for training and head home again about 7.00pm. On my way home I would often stop at the supermarket and buy groceries. Fighting off hunger pangs on the 45km homeward trip I would often snack or graze on my groceries. Maybe an apple, a slice of ham or some dried figs… nothing wrong with that, except for the small bout of tummy pain I sometimes got the next morning. You see, as far as I’m concerned the knurled handles on gym equipment has got to carry a lot of germs on them and sucking your fingers after handling dirty weights can’t be too good for you! By the middle of 2008 I actually decided to carry an antiseptic pump spray in my car so I could disinfect my hands before I ate on the fly. Who really knows? By then my shoes were already uncomfortable.

So, that’s my lot and what an interesting ride it’s been so far. My shoes never got broken in, my leg muscles never got bigger, magnesium in my diet never stopped my night time cramps, and I never got ‘country feet’ last summer and, oh, that cold clammy feeling flowing through my legs last winter? Well that returned last week, twice. To make matters worse the global swine flu pandemic has just possibly touched down in Nelson at a time when I have been told to be very careful with my health due to my medically reduced immune system…

All I know is that I want to be able to fly an aeroplane again, go snow boarding, ride my dirt bikes, work up on my land and get back to the gym. I've still got too much I want to do and I am going to get there. Watch me. I'm Jon Anda and I'm from Nelson, New Zealand, jon@pinksalt.co.nz

Jon’s hot tip for CIDP feet relief

The only tip I have for CIDP sufferers is: Protect your sensitive feet! Buy yourself some Muck Boots. MuckBoots are a super-comfortable insulated gumboot made from thick neoprene, which is basically wetsuit material. They are spacious, comfortable and offer far more foot protection than slippers, which are the only other footwear I have been able to wear for the past two weeks. Muck Boots are distributed in NZ by Swanndri and you can get them from most farm stores like Fruit fed and CRT. www.swanndri.co.nz