AnonymousSeptember 3, 2010 at 11:12 am
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.
AnonymousSeptember 9, 2010 at 11:33 pm
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
September 24, 2010 at 4:34 am
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.
AnonymousOctober 7, 2010 at 1:05 am
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’!
Linda : )
November 5, 2010 at 11:36 pm
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 (email@example.com)
AnonymousNovember 6, 2010 at 1:26 am
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?
November 6, 2010 at 1:59 am
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.
AnonymousMarch 5, 2011 at 6:28 am
thanks to all the Aussies (and others )who replied to my call…I dont get on very often and forgot I asked this question.
Its good to know Im not alone down here, but only 12 dx’d each year in Australia!!!
Tim..Skennars Head is 20 minutes south of Byron Bay and 5 minutes from Lennox Head. You seem to be the closest one to me. I originally was dx’d on the Gold Coast and use to travel there for IVIG..I can now get it closer to home.
AnonymousMarch 5, 2011 at 3:54 pm
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.
AnonymousMay 6, 2011 at 6:11 am
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)
AnonymousMay 6, 2011 at 9:00 pm
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.
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