All about Guillain-Barré syndrome: Molly has CIDP, with associated issues of collapsing veins, medication, movement issues..

Thank you for taking an interest in my situation. I would be happy for you, Sharon, to publish my story for other people to read. Hopefully I will be able to hear from people who are travelling this same road and especially I would like to hear from those who have been cured of this condition or who have found relief from the symptoms or have experienced any improvement whatsoever in their functioning.

How it all began
In July 1998, midwinter in Australia, many of my year 9 students were so sick with the flu. I decided to take the flu shot as a preventive measure. I thought at the time that this would be a wise thing to do. Amidst all this I was also under enormous pressure and stress both at work and home.

Two months after I received the flu vaccination, I developed pins and needles as well as numbness in both my arms.
In Dec.'98, during an Aerobic's Instructor exam, my legs developed a heaviness and wooden feeling, and I fell and failed the exam. I had to sit re-sit the exam at a later date and passed.
In Jan. 1999, as I usually do, I went for a walk with my dogs and suffered another fall and had great trouble getting up.

I saw my GP and was advised to slow down my active life. I decided to book in for numerous massages and saw a physiotherapist, naturopath, acupuncturist and chiropractor.

Unfortunately, none of these practitioners were able to help.
My vision had also started to bother me and my long term trouble with my ear, which is related to a perforated ear drum, worsened.

I am told I have CIDP
By March, my balance had started to deteriorate and I sought another GP's opinion who immediately referred me to a specialist. The routine checks and formalities such as blood tests and the rest started to take place.
By July'99, I finally saw one of the well known neurologists in Melbourne. After a careful examination with EMG plus other tests he diagnosed my condition as CIDP. I was dumbfounded as I had no idea what it was. I remember crying endlessly all the way home.

My husband and I began our own research and found some information through the net. The following week I began my dose of 5 consecutive days of Intragam. This did nothing. My reflexes worsened. The numbness in both my legs and arms continued. Luckily it stopped just above my knees and elbows. My orthotic specialist made a few splints and custom made shoes.
I continue to be active in the gym and in the pool in the hospital under the supervision of a physiotherapist.

Collapsing veins - and a blood clot
Since being diagnosed, I have exhausted all the major conventional medication available including chemotherapy and oral cyclosporin. My veins had started to collapse, so a permacath was inserted in my chest to access treatments.
In January 2003 my neurologist suggested another trial of Plasma Exchange. After only 5 treatments out of 12 (administered fortnightly) I suffered a fall causing the permacath to bleed and this resulted in a staph infection. I became extremely sick and was hospitalised. A lot of strong antibioctics were pumped into me to beat the bacteria.

On the 2nd week of my hospital stay, shocking news shattered me to pieces. A blood clot had been found sitting the right side of my heart. It had to be removed before it moved to my heart or brain. It was believed that the blood clot may have been sitting on the end of the permacath line for some time.
Luckily I was under the care of three very skilled surgeons who carried out the delicate operation by removing the clot via the femoral artery. I woke up with little discomfort.
On the 5th week I was sent home prescribed with warfarin to thin my blood. I will have to undergo a re-examination in 2 months time.

Life after the clot
I have refused to have any device inserted into me fearing another infection. So fortnightly when I go for my Intragam several injections go into my foot before a vein can be found. This adds much agony to my life and I wonder how much longer I can keep going.
In combination with Intragam and Prednisolone which I have been taking for 3 years now (I am now on 10 mls daily) I also started taking Immuran 6 weeks ago. Time will tell how I go with this.

I returned to work in 2001 on a part time basis after 18 months break. Up until March 2003 I was able to drive and was mobile with the help of a walking stick. The recent episode has really put me back. My balance has deteriorated so much so that I am now walking with the aid of a walking frame. My legs have to be helped to get into the car. Other than teaching part time at the university, my husband Steve has become my carer.

Prior to Cidp, I always dreamed of having an early retirement as we are both in our early fifties. Now we are taking it one day at the time. I doubt it if I will ever go back to work.

Fighting back!
I have a strong determination and positive attitude. I am not about to give up and let it crush my spirit. Despite the humiliation I experience because of my condition, I intend to fight until I win.

The extreme fatigue I experience means I have to rest most afternoons. I also have difficulty conversing as sometimes my jaw does not respond as quickly as before to my brain's commands. My fingers have become curly and I wear long skirts or pants to conceal my wasting muscles and splints. I packed away all my skirts long ago. I purchased an electric recliner chair to assist me in getting up easier. My garden tools have become rusty, but the birds are still singing beautifully to help me meditate in the garden.

Sometime I wonder if there is a future for me. I dream about climbing mountains again some day!

Molly Campbell
2003