Hi everybody!

My name is Anna Matthews, I am 43 years old, and in December 1984 I started getting Pins and Needles in my feet and hands.

I didn't really worry about it until Thursday two days later, when I was having trouble sleeping because of it. So I went to my GP who gave me allergy tablets and said come back after the weekend if I was no better. By Monday I found I couldn't lift my 15 month old daughter, so I went back to the GP but my own doctor was away and the relieving locum gave me pain killers as I was sore in my legs and arms, but he also said come back next week if no better.

By Wednesday I couldn't really tell if I needed to go toilet and was having problems with fiddly things like buttons. I went to a homoeopathic who clinked and clunked then said to come back on Friday. By this stage I had difficulty climbing stairs, he clinked and clunked again but to no avail so he said that I had to go and see a Neurologist. So I made an appointment to see my GP to get a referral on the Monday, by this stage I could not walk very well in fact my mother half carried me.

My GP did a few tests one of which I was to say "Hopping Hippopotamus" which I couldn't, my blood pressure was very low, I couldn't dial the phone or write on paper and I couldn't stand with my eyes closed, there was also no reflexes in both legs, wrists and elbows (reflexes are still like that to this day). The GP admitted later he thought I had a brain tumour and would have given me two years to live. Thankfully he was wrong.

Anyway he sent me into Auckland Hospital where they did all sorts of tests, a milogram which came back normal, peppermint essence on my tongue which tasted nice, no difference between sharp and blunt, no reflexes in legs or arms, couldn't feel cottonwool, no co-ordination e.g. couldn't place my finger on my nose etc. After two days they came back and informed me I had GBS, (which they are now wondering if I have a brother or sister of this virus).

I didn't get any medication but they kept a close eye on my blood pressure (the lowest was on Xmas morning 80/50) and breathing ability. What I did get was morning sickness I found out I was only just pregnant with my second child (who turned out to be a bonny boy)!
I felt I was one of the lucky ones because the numbness stopped at my waist, and went up my arms around my neck but didn't go to my chest area. I spent 2 & 1/2 weeks in hospital and I finally talked them into letting me go home. I didn't start getting physio until I went home as they were closed for Xmas.

Mum lived with us for 3-4 months, when she went home it took me half an hour to peg one line of washing, I couldn't lift the jug to make a cup of tea, but I could walk using a pushchair for approx 30 mins. The numbness slowly went back down but stopped at my wrists and calves which means I have poor balance and not much strength. My tastebuds are still not right either. The pain was only in my right lower leg (pain is only for a few days at a time with a little break then starts again).

In 1992 I contacted Prof Donaldson (Christchurch N.Z.) as pain in right leg was now above the knee, and lower left leg. He did tests, nerve conduction, lumbar punctures, CT Scan, MRI Scan to name a few as well as a muscle biopsy and took a piece of nerve which showed I had 25% nerve damage. He has also noticed that I have slow responses with my eyes, about which nothing was ever said in Auckland. I came out of the hospital feeling nothing positive had come out of it all.

In 1994 I fell and I had 2 hairline fractures in left ankle, which has now made me reliant on a walking stick. I cannot get myself up stairs without a hand rail. I can't lift my leg more than 3-4 inches off the ground. The pain is now in both legs and lower back, it feels like sciatica pain, where it shoots down the legs.

In 1996 I had a course of Intragam (Intravenous Gammagobulin) for 5 days but that did not improve the balance or strength, I had no pain for 2 months but I think they feel that the intragam didn't stop the pain. Prof Donaldson referred me to Mr Pollock of Dunedin as he examines their mystery patients. He informed me I had Chronic Nerve Inflammation and he requested another course of Intragam (February 97) with nerve conduction tests before and after but still no change.
Prof. Donaldson keeps telling me I am a mystery to him, as GBS sufferers usually have a 100% recovery, but not so for me. I don't seem to have the general symptoms of GBS, does anyone know of anyone with similar symptoms as I feel like I am out on my own. But I feel I am still very lucky as I have two lovely children and a husband who is very supportive.

December 2001: After receiving newsletters from our GBS Support group, who I think also put me on the USA-GBS Support Group mailing list, I now wonder if I have CIDP. Jenny has just informed me that Dr Gareth Parry thinks that if the Doctors have told me I have Chronic Nerve Inflammation that I am being told I have CIDP.

I do feel that when you compare me now to 10 years ago I have definitely got worse. I now use two elbow crutches for balance because if the ground is even a little uneven I need the support. If the ground is even I can walk without the aid of sticks e.g. inside. I can manage walking around the block with a friend which takes me 45 mins at a snails pace but it certainly works off the calories. I find it very difficult to get out of a lounge chair, but hey that's what hubbies are for when the energy level is low!!
I spend a lot of my time doing cross stitch and hardanger, I just can't take my eye off the needle or I would drop the needle. I am a very positive person and I don't let this get me down as there are far more people worse off than me, and life is to short to waste feeling sorry for yourself.

I hope this has been helpful to anyone out there. God Bless You.
Anna Matthews, Greymouth, N.Z.

Webmaster: Please email Anna with your comments and suggestions and let her know if sharing her experiences has in any way helped you. She would appreciate knowing this. Thank you!

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