New group!

Hootsmamma

Hi everyone. My name is Vikki. I am not new to MFP (have been on since 3/31/11) and I am already friends with a few of you in this group. However, I did not know there was an actual MS group. And so,...now I do! Great idea. It's so nice to have some folks out there who can actually relate to some of the unique problems or concerns those of us who have MS face on a day to day basis. I have already found some useful info on here that I did not know! Thanks to all of you for being so open and sharing. I was diagnoised in 1997 on my 37th birthday (optic neuritus was my first big symptom) although I had experienced many others but just did not relate them to what was happening to my body at the time. I have been on Copaxone since 1998, but have started to have more and more flare ups as of late--so I believe it is no longer working for me. Not sure what I should try next as I did Not do well at all on Betaseron at all. Also, I have a terrible problem with painful spasticity. I am a horsewoman--who enjoys the outtdoors (which is hard sometimes as I live in the desert) and heat can be a real problem for me -even when I wear my cool vest. I don't want to go on too much longer as its a beautiful day here in AZ and I want to get outside to spend some time with my 4-legged friends! I look forward to getting to know more about all of you and sharing our success stories as well as our challenges.

ChristineW82

Hi everyone. My name is Vikki. I am not new to MFP (have been on since 3/31/11) and I am already friends with a few of you in this group. However, I did not know there was an actual MS group. And so,...now I do! Great idea. It's so nice to have some folks out there who can actually relate to some of the unique problems or concerns those of us who have MS face on a day to day basis. I have already found some useful info on here that I did not know! Thanks to all of you for being so open and sharing. I was diagnoised in 1997 on my 37th birthday (optic neuritus was my first big symptom) although I had experienced many others but just did not relate them to what was happening to my body at the time. I have been on Copaxone since 1998, but have started to have more and more flare ups as of late--so I believe it is no longer working for me. Not sure what I should try next as I did Not do well at all on Betaseron at all. Also, I have a terrible problem with painful spasticity. I am a horsewoman--who enjoys the outtdoors (which is hard sometimes as I live in the desert) and heat can be a real problem for me -even when I wear my cool vest. I don't want to go on too much longer as its a beautiful day here in AZ and I want to get outside to spend some time with my 4-legged friends! I look forward to getting to know more about all of you and sharing our success stories as well as our challenges.

Hi Vikki,
Glad you found the group

I'm kind of at a stand still with medications right now too.

sedavis62

Hello Everyone

I'm glad I found this group. It's been a long time since I've talked to others dealing with MS. I was dx'd in 1994 after two bouts of numbness and MRI apparent lesions. In 1997, I lost the vision in my left eye which scared me enough to try the *new* drug Copaxone. I've been on Copaxone since December 1997. There is no question it has helped slow the progression of my disease; however, it has been more difficult to take in the past year and (maybe not coincidentally), my baseline is worse than it used to be.

I typically have flares ~once/year, sometimes bad enough to warrent high-dose oral steroids, but overall, they aren't bad. I work full time and manage my fatigue by working from home one day a week (my employer has been wonderfully supportive through the 18 years since my diagnosis!). In 2007, I lost 50 lbs through the age-old method of counting calories and walking my crazy dogs (Shiba Inus). In the past two years, my weight has crept up 10 lbs and the spasticity in my legs has gotten pretty bad, so I am motivated to lose the weight and increase my exercise repertoire.

In addition to walking, I use a recumbent bike at home. I ride for 60 mins at high resistance while watching a DVD of the latest episode in whatever TV series I'm into [I've been through all the Star Trek series, Mad Men, Downton Abbey and am now in the 5th season of Lost (which has been awesome!).] I recently started doing calesthenics in the morning and am very sore, but happy to be able to do them without falling over.

I'm interested in hearing how others are fighting the weight battle while coping with balance, weakness and spasticity problems. I'm also very curious about the oral med folks are using now. I'm really sick of the shots. They hurt every time now and it's hard for me to remember/justify why I'm inflicting pain on my already battle fatigued body.

I'm pretty new to MFP, so feel free to friend me

Sue