Search found 25 matches

by Pktpkt
Mon Jul 20, 2015 9:42 am
Forum: Ampyra (Dalfampridine)
Topic: Would like to hear from people using Ampyra
Replies: 22
Views: 28738

Re: Would like to hear from people using Ampyra

I feel stable on my feet again. I feel more together. I feel normal again. I can fly up and down stairs. I walk all day in very hot weather with absolutely no drop foot. Then I can run to my car afterwards. I still eat as much green as possible. I still avoid dairy and red meat as much as possible. ...
by Pktpkt
Tue Jun 30, 2015 2:21 pm
Forum: Ampyra (Dalfampridine)
Topic: Would like to hear from people using Ampyra
Replies: 22
Views: 28738

Re: Would like to hear from people using Ampyra

I noticed the difference after my second dose. I've been on it for 3 weeks so far and I feel normal again. I am a 39 year old male diagnosed last fall 2014, and I gotta say, this medicine has me running again. It has eliminated my foot drop , and I've tripped my time and have increased my speed duri...
by Pktpkt
Fri Jun 26, 2015 11:48 pm
Forum: Aubagio (Teriflunomide)
Topic: Aubagio and Hair Loss side effect
Replies: 46
Views: 52014

Re: Aubagio and Hair Loss side effect

I am a 39-year-old male. When I was first diagnosed with MS, the thought of needles scared the living daylights out of me. I decided to go on Aubagio immediately. I started taking it in October 2014. As early as November 2014, I noticed my hair was thinning. This lasted for maybe 3 or 4 months. By M...
by Pktpkt
Mon Feb 16, 2015 7:34 am
Forum: Drug Pipeline
Topic: Opinions on NDC-1308?
Replies: 0
Views: 1833

Opinions on NDC-1308?

This is exciting stuff I've read. Any opinions on this drug?
by Pktpkt
Wed Feb 11, 2015 1:37 pm
Forum: Introductions
Topic: Dx rrms but very scared its ppms. Opinions needed.
Replies: 33
Views: 7641

Re: Dx rrms but very scared its ppms. Opinions needed.

Ok...so are you suggesting what I'm posting about sounds like ppms?
by Pktpkt
Wed Feb 11, 2015 10:04 am
Forum: Introductions
Topic: Dx rrms but very scared its ppms. Opinions needed.
Replies: 33
Views: 7641

Re: Dx rrms but very scared its ppms. Opinions needed.

Sorry for the delay. Yes fatigue and balance issues do not go away. I've been sticking to the swank diet but I've been doing it a little overboard by staying under 5 g of saturated fat a day I've now increased it to 9g and find myself having a little more energy....I still get rocked by afternoon fa...
by Pktpkt
Thu Jan 22, 2015 1:31 pm
Forum: Introductions
Topic: Dx rrms but very scared its ppms. Opinions needed.
Replies: 33
Views: 7641

Re: Dx rrms but very scared its ppms. Opinions needed.

What really sucks is me turning 40 this year, having sole custody since 2012 of my 3 year old daughter from a previously relationship (im a father that fought hard and paid big in family court to beat my dead beat ex), getting married to a beautiful woman 11 years younger then me in 2013. having a h...
by Pktpkt
Wed Jan 21, 2015 11:29 am
Forum: Stem Cells
Topic: Advice needed. What country is best for HSCT? I'm doing this
Replies: 1
Views: 2102

Advice needed. What country is best for HSCT? I'm doing this

Hello. I am new to this board. I was diagnosed late last year. Below is the link to another thread I posted about my situation. The nurse at the MS clinic has now told me that I have MS in my spine. http://www.thisisms.com/forum/introductions-f20/topic25534.html So I am 39. I have an EDS score of 1....
by Pktpkt
Tue Jan 20, 2015 8:28 pm
Forum: Introductions
Topic: Dx rrms but very scared its ppms. Opinions needed.
Replies: 33
Views: 7641

Re: Dx rrms but very scared its ppms. Opinions needed.

My MS clinic results on my spine MRI won't be given to me until I do a follow up visit in May at the Toronto MS clinic. I have a pain in my upper right abdomen and I did call the clinic today to inquire about it possibly being related to Aubagio that I have been taking for 3 months now. The nurse ad...
by Pktpkt
Fri Nov 28, 2014 4:19 pm
Forum: Introductions
Topic: Dx rrms but very scared its ppms. Opinions needed.
Replies: 33
Views: 7641

Re: Dx rrms but very scared its ppms. Opinions needed.

Something I'm dealing with that is driving me nuts is a lingering feeling of fatigue/weakness/numbness coming up the inside of my right leg and knee. It's so hard to gauge if this feeling comes and goes, or if it's getting progressively worse. Well I get my spine MRI next week and that should tell m...
by Pktpkt
Tue Nov 18, 2014 6:06 am
Forum: General Discussion
Topic: Vaccinations
Replies: 33
Views: 5509

Re: Vaccinations

In order to do Twinrix properly you need to do one shot, then another one a month later, then a third 6 months later I believe? I had chronic lower back back that I thought was a sciatic nerve. It would shoot down my left left. I've had this pain since 2008. After going for a 10 km walk in 2012, my ...
by Pktpkt
Sun Nov 16, 2014 10:32 pm
Forum: Introductions
Topic: Dx rrms but very scared its ppms. Opinions needed.
Replies: 33
Views: 7641

Re: Dx rrms but very scared its ppms. Opinions needed.

Balance, however, was still problematic. I did some physical therapy to reteach me how to walk, as I was spending a lot of time looking at my feet. Thanks for this Froggie. This is one of the issues I find myself dealing with too. It's unpredictable for me. Some days it's worse than it is on other ...
by Pktpkt
Sun Nov 16, 2014 6:55 am
Forum: Introductions
Topic: Dx rrms but very scared its ppms. Opinions needed.
Replies: 33
Views: 7641

Re: Dx rrms but very scared its ppms. Opinions needed.

Thanks.

So the idea I am gathering here is that it is rrms that I would have by the sounds of it. It is the day to day overall feelings that make me mostly paranoid. The constant up and down.
by Pktpkt
Sat Nov 15, 2014 3:31 pm
Forum: Introductions
Topic: Dx rrms but very scared its ppms. Opinions needed.
Replies: 33
Views: 7641

Re: Dx rrms but very scared its ppms. Opinions needed.

Thanks for that post. My walking difficulty also comes and goes. One day easy, another day it's off. I don't know if it's because this MS stuff is so in my head now, but I had some cheese today and felt off balance all of a sudden. However 2 months ago before I even had my MRI, I didn't notice anyth...
by Pktpkt
Wed Nov 12, 2014 7:01 pm
Forum: Introductions
Topic: Dx rrms but very scared its ppms. Opinions needed.
Replies: 33
Views: 7641

Re: Dx rrms but very scared its ppms. Opinions needed.

Thanks for your post. These symptoms are coming and going. Like back pain is a 10/10 for 2 days, then a 2/10 for 3 days. Up and down, up and down. I feel stable on my feet one day, unstable on my feet another day. Leg fatigue one day, no fatigue another day. I feel like a yoyo over here. Lol. I hope...

Go to advanced search