I am just wondering if there is anyone else on the forums from Australia?
I have ATN. I also have Chronic fatigue syndrome but have been in remission from my serious crash for about 10 years now, though I do have mini crashes that last a month or two.
I live in Brisbane and have been diagnosed by my GP. AT first I did have a few trips to the DEM/ER and refered to a Rheumatologist as they thought it was related to my CFS. (I was having issues with the headaches on right as well as skin numbness from the knees down). I had CT scan and then MRI which were all clear. The specialest did document the possability of TN.
After the second bout of ANT that my GP had said It was TN. I did some reaseach and realise that I have the type 2 NT.
I'm just wondering if it is important to see a neuro at all? I am prety much in control of the pain with 150mg Lyrica twice a day and panadine forte. Well so far anyway.
Hi Amanda,
Welcome to the group. If you look up the top at all the tabs there is one that says groups, if you pick that one you’ll find an Aussie group and also a group for people with TN2
I’m in sydney but I am sure there are some people from Brisbane that may be able to help with a recommendation.
Personally, I think it is worth seeing a neurologist as things change with TN and sometimes it can take quite a few months to get a first appointment.
Lots of very knowledgable, kind people here so I am glad you found us.
TN is not confined by borders! There are Australian support groups for TN, in fact I attended the Melbourne one yesterday. It was the second time for me and, as in the first attendance, I found a very caring and supportive group of people, all of whom understood the pain! The national conference is on at Seaworld on the Gold Coast in a couple of weeks.
It is probably worth seeing a neurologist but, to be honest, my experience with them hasn't been valuable. Prof. Andrew Danks, an expert on TN, told me he doesn't think I have it because it's on both sides! There were three of us at the meeting yesterday with bilateral pain and several people on the forums here have said they have the bilateral TN.
If you're in control of the pain then I suggest you stick with what you are doing.
Am sorry I missed the support group meeting, I live in Melbourne and would have come. I did try to find a date recently but obviously looking in the wrong places. I have both Atypical and Typical TN and am currently considering surgery. I don't know why they would say it is not TN as this can occur on both sides though apparently this is generally only with people with MS. My GP told me I didn't have it initially as when he touched my face I didn't jump. He did eventually agree but I see a neurologist.
Generally the Trileptil manages the pain but it comes back for a few months every year or so, more frequently now.
Do you have the contact for the Melbourne support group? I am assuming they meet once a month?
Thanks Kaye
Wendy (Mugi)
Kaye J said:
Hi Amanda (and Trish),
TN is not confined by borders! There are Australian support groups for TN, in fact I attended the Melbourne one yesterday. It was the second time for me and, as in the first attendance, I found a very caring and supportive group of people, all of whom understood the pain! The national conference is on at Seaworld on the Gold Coast in a couple of weeks.
It is probably worth seeing a neurologist but, to be honest, my experience with them hasn't been valuable. Prof. Andrew Danks, an expert on TN, told me he doesn't think I have it because it's on both sides! There were three of us at the meeting yesterday with bilateral pain and several people on the forums here have said they have the bilateral TN.
If you're in control of the pain then I suggest you stick with what you are doing.
I don’t have the direct details for the melbourne support group but I just had a quick look of the website below and it appears that it is at ringwood library. Hopefully someone will have all the details but if not I’d just use the website to find contact information. Www.tnaauatralia.org.au
The Melbourne Support Group meets every second month at the Maroondah Federation Estate, 32 Greenwood Avenue, Ringwood - Room 4. (Melways map 49 H10).
The meetings for the rest of the year are on 12th October and 14th December, starting at 1.30pm through to 4.00pm. Admission is a gold coin donation. The first part of the meeting is updates and sharing of experiences, followed by afternoon tea which gives a good opportunity to talk to others about particular experiences which may relate to you.
It really is worthwhile attending, if you possibly can.
I have the contact person and phone number and will put the dates in my calendar, look forward to meeting you there.
Kaye J said:
Hi Amanda, Trish and Wendy,
The Melbourne Support Group meets every second month at the Maroondah Federation Estate, 32 Greenwood Avenue, Ringwood - Room 4. (Melways map 49 H10).
The meetings for the rest of the year are on 12th October and 14th December, starting at 1.30pm through to 4.00pm. Admission is a gold coin donation. The first part of the meeting is updates and sharing of experiences, followed by afternoon tea which gives a good opportunity to talk to others about particular experiences which may relate to you.
It really is worthwhile attending, if you possibly can.