Julie Rivett

CIDP and My Journey

In September 1994 [aged 40] I noticed weakness in my arms and legs, but as no pain was associated I put it down to something I had done and didn’t follow it up. However by November 1994 I had become much weaker and was having difficulty in carrying out everyday tasks. I also had a couple of falls and had difficulty getting back onto my feet.

I sought medical treatment and was admitted to hospital where I had a week of tests before being diagnosed with GBS. I was discharged from hospital without any treatment in the hope I would improve. I continued to deteriorate so was given 3 days of Intragam just prior to Christmas. My improvement was noticeable within a few days even after contracting meningitis from one of the doses of Intragam. I continued improving until I
was about 80% – 85%.

At some stage early in 1995 it was decided I had CIDP and to try and stabilise me I began having intragam every 3 weeks and this certainly worked for quite some time until my specialist in 1998 tried to extend the gaps between treatments. We got out to 8 weeks but this wasn’t successful and over a period of time the gap has reduced and at the moment I am having weekly Intragam.

I have hydrocortisone prior to Intragam as I developed a very uncomfortable rash which covered my whole body. The nerve conduction tests I have had over the years have showed no change and my current specialist feels for me it is not necessary to have any more as they are so painful. My symptoms include both deep pain and the pins and needles type sensations and over the years and they seem to come and go at various times.

It is certainly a daily challenge but a positive challenge. While frustrating as it is and can be I have developed a realistic expectation and plan around it. I constantly monitor my condition and have learnt to recognise the times I need to stop and other times when I can push the barriers. My stamina has clearly dropped and once tiredness sets in I need another day to regain the ability to continue.

I know I am not as strong as I used to be and am now probably only 50% and so find some of the routine tasks more difficult and I need to put more effort into every day things like going up and down steps hanging washing and opening the car door. As it is difficult to predict the future its important to enjoy what you can, when you can.