Search found 93 matches

by smokey
Mon Aug 09, 2010 10:30 pm
Forum: Avonex
Topic: Anxiety on day of Injection
Replies: 7
Views: 3022

The depression is probably a side effect of Avonex. This can be treated using anti-depressant medication. I have found that it helps to create a comfortable environment in which to self inject, somewhere relaxing - and I keep my routine similar every week. I usually sit on the floor (!) because my l...
by smokey
Sat Aug 07, 2010 9:29 pm
Forum: Avonex
Topic: Important to always inject on same day?
Replies: 3
Views: 2407

Hi Kelly, I have exactly the same problem. Very very occasionally I change the day, but I prefer to keep to routine. Also the neurologist is pretty keen that I stick to routine as far as possible. Maybe ask your neurologist for an opinion? Smokey.
by smokey
Sat Aug 07, 2010 9:27 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Did your eye sight improved after angioplasty?
Replies: 23
Views: 5248

Question for Garyak

Hi Garyak, thanks for your comments. Do you think a change from 6/75 to 6/6 post procedure would be due to the effect of the procedure? My vision was a steady 6/75 in the left eye post onset of ON. When my vision deteriorated again after a couple of weeks post procedure I wondered if I had been 'see...
by smokey
Sat Aug 07, 2010 1:08 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Did your eye sight improved after angioplasty?
Replies: 23
Views: 5248

My ON improved from 6/75 to 6/6 after angioplasty. Unfortunately this improvement was not maintained. I estimate it lasted a couple of weeks. I have had a minimal ongoing improvement. Hopefully the next angioplasty will lead to a lasting effect.
by smokey
Sat Aug 07, 2010 1:04 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Lorenzo's oil Must watch film – a reminder for medical prof
Replies: 4
Views: 1686

Hmm. 'Awakenings' although fascinating is also very challenging and reminds us that 'cures' are not always cures. The 'cure' was temporary.
by smokey
Thu Aug 05, 2010 9:54 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: exercise and ccsvi
Replies: 11
Views: 2221

Yep, intensity of exercise for the upper body/neck after angioplasty concerned me too. Guess this one has still to be resolved.
by smokey
Tue Aug 03, 2010 10:44 pm
Forum: Avonex
Topic: Anxiety on day of Injection
Replies: 7
Views: 3022

Re: Anxiety on day of Injection

I am experiencing anxiety within a couple of hours of injecting. I can function, but I am miserable for several hours with the anxiety, fever, chills, and pain. I have been on Avonex 1 year--since diagnosis in Aug. 2009. The side effects are still quite severe for the first 24-36 hours after inject...
by smokey
Sat Jul 31, 2010 1:25 am
Forum: Avonex
Topic: starting avonex
Replies: 7
Views: 3171

Hi, I don't use ice either. I find if I plunge the needle into my thigh quite quickly then it doesn't hurt so much. I rotate the sites on either thigh..towards the outside of the thigh. I use either panadol or nurofen. I inject at about 11am and then start feeling 'off' from about 7pm and into the n...
by smokey
Sat Jul 24, 2010 11:45 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: recovery time in CCSVI operation?
Replies: 2
Views: 1586

Without stents, allow for a couple of days. The first day is pretty ordinary, but by the third, you will feel more normal, with, hopefully, some improvements. I dont know about the length of time for recovery following stenting.
by smokey
Sat Jul 24, 2010 10:13 pm
Forum: General Discussion
Topic: how do you stop being afraid?
Replies: 11
Views: 2384

I stopped being (so) afraid once I had discovered CCSVI. It is not a miracle cure, but it gave such hope. Hope is so important. It is also really beneficial to develop a group of others to communicate with. Not that I don't continue to feel afraid now and again, but far less so, and far less often.
by smokey
Wed Jul 21, 2010 2:33 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Exercise following liberation?
Replies: 11
Views: 2100

Thanks guys....
by smokey
Mon Jul 19, 2010 11:45 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Exercise following liberation?
Replies: 11
Views: 2100

Exercise following liberation?

Hi....any thoughts about exercise, type of, and frequency of, following liberation? What to do, what not to do? I do Pilates, but have been a little worried about any negative effect of the upper body exercises. This is all uncharted territory, so suggestions welcome.
by smokey
Wed Jul 14, 2010 1:18 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI - Aussie Action!
Replies: 851
Views: 175879

Re: hang in there

nico, the Nightmare was before CCSVI was identified. You know, I've had two procedures now - each with its share of success and failure. I can tell you the second procedure I had was so improved upon the first, and there was only 3 months in between. Wait another month or two, and I believe the dia...
by smokey
Sat Jun 26, 2010 8:20 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Occam's Razor
Replies: 13
Views: 1834

Too true!

May Occam and Zamboni be eternally cited!

It's a privilege to be at the cutting edge.
by smokey
Sat Jun 26, 2010 8:05 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Occam's Razor
Replies: 13
Views: 1834

Awwww, thought I might have been original.....never mind. Still a damn fine principle.

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