This Is MS Multiple Sclerosis Knowledge & Support Community

Well I'm 3 days out from angioplasty (Weds am) and I feel able to post again. Remembering I'm PPMS and have been so for 16 years. Initially I felt no different from before the procedure. I did have quite some pain during it whilst the wire was up above my ears. Stenoses were found in both IJVs, (dop...

Sono Liberata!! No. 5!!

I know of several people who have had their doppler done (at $300) with a result of no stenosis, but abnormal blood flow. These people have been recommended to do the MRV (at $1300). However they've talked to Prof T. and he recommends a venogram, as the MRV may still not show what the problems are, ...

Just wishing Katzi, Mark's wife, all the best for tomorrow and to Helen on Wednesday.

See you on the other side!!

Jennifer

I am seriously ******ed off. I just had to call my neuro's office to change an appointment. I was to see him the day after my procedure and thought it would be better to see him a month after. Anyway, I ended up talking to his nurse. She said she thought I was very brave undergoing this major surger...

Our very best wishes to Daniel for tomorrow's procedure.
You are in very safe hands.

Regards
Jennifer

Aventitech,

Don't forget you are our pioneer too!!
Without you, I wouldn't be getting treatment soon.

Best wishes
Jennifer

I went to see the good Prof. yesterday and I'm scheduled for my angioplasty on 17th March. (No. 6) He is a very kind and sensitive person, who is only interested in relieving our symptoms. If you have a stenosis, he will fix it. He did say he's talking to a collegue in Queensland, so when there's in...

If I had a brain that didn't forget what I had planned to say, I'd have remembered that I wanted to say a BIG Thankyou to all our Aussie Pioneers, especially Marzy, Avantitech and Kezzcass. You guys have made it much easier for those who follow. I, like many others, have been off on our own tack to ...

I have already asked my doctor for a referral and because she has never heard of CCSVI or seen that it is a recognised condition in her medical circles, let alone it's association to MS, she told me she couldnt give a referral as there are no 'indications' or immediate reason for investigation. she...

Sorry Nico, I obviously misread your information about your MRV. I truely apologise.

I hope you get some answers soon.

If there's a negative result I believe they've just not found the problem yet.

Regards
Jennifer

Where do I start? I'm so excited!! Had my doppler done with the wonderful Dr. Julie yesterday and she found both IJVs have reduced flow. Woo Hoo!! The right seems to be down by 75%, though I don't have the report yet. If you can afford the $300, go get it done. It's the best money I've spent in year...

Nico,

Where are you getting your MRV done?

I've had one, but no-one seems to have made a report on it.

Jennifer

Oops, also meant to say, (from Dr. Haake)

We need to stop saying CCSVI is related to the etiology of MS. We need to tell them there is another disease out there called CCSVI and many MS patients have it.

Sorry to repeat myself, but go to: http://doctor-finder.sirweb.org/index.cfm Put Australia in the coutry search and you will get a list of Interventional Radiologists. Pick one and email them through the site. That's what I have done and as soon as he's back from holidays I will talk to him. Please ...