Search found 22 matches

by nenebird
Sun Jan 01, 2012 6:31 pm
Forum: General Discussion
Topic: On what basis did your doc diagnose you?
Replies: 18
Views: 2405

Re: On what basis did your doc diagnose you?

My neuro really couldn't detect any abnormality from my MRI's but he was not an MS specialist. I had a spinal tap and it was conclusive.
by nenebird
Sat Apr 11, 2009 6:52 pm
Forum: Copaxone
Topic: Copaxone for ppms? (also posted in general disscussion)
Replies: 10
Views: 5945

I have PPMS and have also been recommened for Copaxone in tandem with Novantrone treatment. My Dr. Sipe, does alot of reaseach and apparently has had some luck with this combo treatment. I said what were the numbers? (excel geek, sorry) 75 out of 100 had some positive outcome, from improvement in sy...
by nenebird
Fri Apr 10, 2009 7:39 pm
Forum: Novantrone
Topic: Novantrone questions
Replies: 6
Views: 6358

Update: just finished treatment #3. The treatment must be cumlative. I do a blood CBC test about 10-14 days after the treatment to check the impact to my immune system. Treatment #2's blood work showed my immune system really took a dive. So much so, that before Treatment #3 they made me do another ...
by nenebird
Wed Mar 18, 2009 7:38 pm
Forum: General Discussion
Topic: PLEASE HELP I IAM SO SCARED
Replies: 247
Views: 32947

Stop with the fear...it doesn't help and actually hurts you...You need a good doctor, sounds like you have the supporting fam, hitch up with an MS Society and armed with your sense of humor and some faith, you will be more than fine...its just MS..Don't freak out.
by nenebird
Tue Feb 10, 2009 9:18 pm
Forum: Novantrone
Topic: Novantrone questions
Replies: 6
Views: 6358

I did my first Novantrone treatment on Friday, Feb. 6. Went well, minimal side effects. The plan is to have one treatment for the next two months then start Copaxone. The combo of the two may suppress my immune system enough to keep the MS from progressing. So I am mushing forward... Chemo is just a...
by nenebird
Fri Aug 15, 2008 4:44 pm
Forum: General Discussion
Topic: Provigil for fatigue
Replies: 12
Views: 2707

Initially mine refused but my Dr. intervened and its approved now.
by nenebird
Tue Jul 15, 2008 7:01 pm
Forum: General Discussion
Topic: Miscarriage
Replies: 9
Views: 2001

I am RH negative too. Take the shot. its no problem.

Good luck getting pregnant again.
by nenebird
Mon Jul 14, 2008 6:37 pm
Forum: General Discussion
Topic: Autopsy
Replies: 33
Views: 5002

I have been dx'd with PPMS. My spine is looked at alot due to my major issue appears to be in my spine which I have heard is not unusual in PPMS. My spine doesn't have lesions but degeneration per my MS specialist.

The original Neuro and radiologist missed it.
by nenebird
Thu Jul 03, 2008 7:27 pm
Forum: General Discussion
Topic: does rrms lead to ppms?
Replies: 16
Views: 3599

What I have read is RRMS can progress to SPMS. PPMS is another kettle of fish.

Its the one I have.
by nenebird
Wed Jul 02, 2008 9:31 pm
Forum: General Discussion
Topic: Support Group?
Replies: 9
Views: 2005

I think it therapeutic to be involved in a support group. Yes, there will always be whiners, but what can you do? I go to a group and we have one who always pipes up about specific issues like no one else has had difficulties. It is a bit tedious but the conversation moves on and luckily this person...
by nenebird
Wed Jul 02, 2008 9:24 pm
Forum: General Discussion
Topic: PPMS - does it always mean the patient will end up bedbound?
Replies: 12
Views: 3372

There is lots of hope. I too got dx'd with PPMS. I immediately started the Swank diet. You can look it up on line, but basically its pretty radical. Has it helped? I think so. I have less numbness in my feet which have been numb since 2006. I take Provigil for the fatigue, which has helped a bunch. ...
by nenebird
Tue Jun 24, 2008 7:12 pm
Forum: General Discussion
Topic: Anyone done Rituxan?
Replies: 1
Views: 1697

Anyone done Rituxan?

What were your results? did your insurance pay? Did it stop your progression?

thanks
by nenebird
Fri Jun 06, 2008 6:04 pm
Forum: General Discussion
Topic: How do you tell your co-workers? Or do you?
Replies: 31
Views: 5261

Just remember you can't control how people will react.

I told my staff because I am pretty tired all the time and its obvious I am not acting my normal self. Not noticeable symptoms yet.

Good luck.
by nenebird
Sat May 24, 2008 3:26 pm
Forum: General Discussion
Topic: Experience Project
Replies: 5
Views: 2749

Very clever person!!

Another site I enjoy is Postsecret.com. Its were they post post cards mailed into the site where people tell the most private of secrets. Its really profound.
by nenebird
Mon Apr 28, 2008 7:03 pm
Forum: General Discussion
Topic: Concrete sandwich and concussion
Replies: 12
Views: 2652

This makes my head hurt just reading this. I had a concussion about 5 years ago from slipping on algae in a stream. Went back full on and hit my head on a rock...I felt like one of those cartoon characters with stars floating around my head. Nausea, dizzy, pain...Took me about 3 weeks to get back to...