Downunder

Welcome Jet, I’m not from Australia, but I once spent a wonderful week in Sidney back in ’69. I’ll bet things have changed since I was there. I hope the people are just as friendly and hospitable as they were then. I was going to buy a 60 foot sailboat and sail to Australia when I retired. It seems that CIDP has changed my plans at least for now. I understand the “Tavern” has Foster on tap. Why don’t you stop by for a cold one.

Jet,

I believe Kazaa is an Aussie and there are several others. Hang around and you will find them. I remember four or five who talked about it, and I am sure that many more didnt.

Good luck. There are others. You are not alone…….

Gidday howz it mate!!
Not quite an ozzie here, just a kiwi chick!!
i havent read any of your other posts yet, so not sure if your GBS or CIDP.
I was diagnoised early 3 years ago at age of 34. Have been on combination treatment since, it took about 9 months to work thru the treatments to find what was my ‘tonic’ and now theres no looking back (touch wood). Not to says things didnt get extremely bleak and depressing in the first year as i experienced life as a quadraplegic and all the difficulties associated with this condition.
Hope things are going the right way for you!?

All the best from New Zealand

G’Day Jet.
Tim here from the Sunshine Coast. I have been receiving infusions for CIDP for a couple of months now.
Where is Skennars Head? They have a fairly active group in Victoria but I am yet to find any others in Australia.
I was diagnosed two and a half months ago after 14 months in and out of 7 hospitals and fifteen different doctors. Only a slight improvment so far but the Neuro said that it may well take some time.

Regards Tim.

Hi to the Aussies (and everybody else!),

This is my first post. This is the first time I have ‘heard the call’ for other Aussies and choose to log on…anybody living in Brisbane?

I have enjoyed reading the forum and wondered where the other Australian’s were…what specialist they were seeing etc. I read somewhere there is only about 12 people diagnosed a year here in aussie land.

I have been ill with cidp for just other 3.5years now. Took about 2mths to be diagnosed, was in Cambodia at the time and was flown to Thailand. So lucky to have a pain neurologist there that knew what it was straight away. But in Australia now with another great neurologist.

I am very interested to hear what treatments Aus/NZ are receiving, just to see if I am in the ‘normal’ range???

I am currently on methotrexate, prednisolone, neurontin, tramal and cymbalta and other bits and pieces for nausea.

Sorry its a long email…guess it can’t be to bad for ‘first contact’!

Cheers,
Linda : )

Hi jet im from wangaratta victoria australia. I was diagnosed with gbs aug 2 years ago. Thisforum has saved my sanity a few times.Keep smiling.

Paul, from Rutherglen Welcome

Hi Linda,

Not an Aussie, but it sounds like pretty standard treatment for the US!
Hope it’s helping.

Hi jdunk,

thanks for the reply. its nice to know that treatments are similar.

i guess as time goes on and my illness goes up and down all the time i just sort of hope there is some sort of new drug out there which will be the ‘magic pill’.

: )

G,Day Linda and any other Aussies. My post is the one above your first one. The Neau that diagnosed me was Dr Paul Sandstrom in Brissy. Who are you seeing? You seem to be on a lot of different meds. My progress is painfully slow.
What are your main debilating symptoms?

Regards Tim (mceagle@gotalk.net.au)

Hi Tim,

We have the same neurologist! Dr Standstrom was instrumental in getting me IVIG. I don’t get it anymore as it seems to have stop working for me.

My main symptoms – pain and terrible fatigue. A lot of times the fatigue is harder to deal with then the pain…that is until the pain starts. After having cidp for a number of years now the pain seems to be targeted in specific areas rather then the whole body, mainly the right side of my body (that is rare I have heard) right leg, right wrist, right eye, the occipital nerve in the head causes terrible pain, also get facial issues as well (eye pain, increased hearing, sight and smell sensitivity causing nausea…yuck), which is not really ‘normal cidp’.

At the start of this year as a last resort, I attended a pain clinic in brisbane which has got me out of bed and into ‘life’ again, it has been so successful…almost feel like a ‘normal’ person again, that is until I have another relapse and I am hardly able to get out bed and look after myself. That is hard.

Does this all sound familiar?

Cheers,
Linda

G;Day again Linda. 12 months ago my pain was in my upper leg muscles but thank goodness it slowely lessened after a few weeks. I can walk OK but only for short distances because of fatigue. Currently my pain is in my upper arm muscles and I think it is getting less but it is taking a long time.

Other than that my main debilitating symptoms are constant dizziness and a general feeling of unwellness (something like a bad hangover) Dizziness taken to the extreme has led me to one seizure and one other total collapse.

Constant dizziness doesn’t seem to be very common amongst most on this forum.

Regards Tim

Hi Jet,
I am an American but am watching a New Zelander who is getting a stem cell transplant in Chicago IL USA at this current time. If you are on Facebook you should be able to find him. Put in your search box “Help Jon Heal” to find him.
Makes for interesting reading and opens new doors for other options.
God bless,
Wendy 🙂

i am in country QLD … i live in a town of 10,000 people and someone in the same town was diagnosed with GBS 6 months before me so it would have to be more than 12 people a year surely? I was treated in Toowoomba and they had seen cases before so i’m guessing there would be more cases / more often in capital cities.

I havent been on here in ages (yes it was a lifesaver in the early days) good to see other Aussies on here (although not good that you have had to go through GBS or CIDP)

I’m with you- looking for a “magic pill”. IvIg, Neurontin, then IV SoluMedrol, then Cellcept and Cymbalta are the main treatments I have received. Currently I’m on 1,800 mg Cellcept daily; 1,200 mg Neurontin; 1,800 mg ALA ; 60mg Cymbalta; plus multiple vitamins. I’m from the United States. Though we are all from different areas- everyone on this site has been so helpful. It’s a wonderful forum.