Newly Diagnosed with MS

Replies to This Discussion

Permalink Reply by Caroline on July 6, 2010 at 2:51pm

Hi Kelly,
Welcome to the group.
MS can definitely be scary. 2 weeks is such a short time, so I would suggest you allow yourself to try to take it all in,
For me, doing online research really helped, and also talking to people online. I found groups on Yahoo and facebook and that helped. For me personally, I felt starting a treatment was important, but that is really a personal choice. What has your doctor suggested to you? What symptoms are you having?
I have had MS for 4 years now... so if you have any questions, please ask!
Talk soon,
Caroline

Permalink Reply by Caitlin on August 2, 2010 at 6:27pm

Kelly -- Phew. Just reading this now, in early August.
I'm in a space where I need to reconnect to the 29 Giving project- and just read your post.
Check out www.caitlinanderson.com -- I'm a life coach and motivational speaker.
Would be glad to have an on the phone discussion, do some coaching with you if you like.
Can be MY GIFT for one of upcoming days.
Couldn't have gotten thru my early dx days w/out support -- now it's my time to give forward.

Caitlin
dx in 2006 w/PPMS

Permalink Reply by Kelly on August 3, 2010 at 12:03pm

Thanks, Caitlin! I really appreciate your offer and would love to talk on the phone sometime. Right now I am still sort of reeling from this whole thing and don't have much support. I have two teenagers, one starting college and the other starting high school in 2 weeks, and I haven't told them (or anyone else, really) what's going on. Keeping this thing a secret has added to my burden and perhaps was a poor choice, but I still can't talk about this without falling apart. I thought I would tell them in a few months after they get settled into school, but maybe there is never a good time. I'd like to talk to you later on, maybe, when I am not a crying mess:)
I hope you are doing well meanwhile!

Permalink Reply by Peggy Sue on August 7, 2010 at 6:03am

I was diagnosed in 1999 and yes it's scary. I had only been married for 3 years and didn't want to burden my new husband with the news. He was supportive and loving and we are still together. I also worried about my job performance. In the end everything worked out for the best. I still have a lot to offer. Taking medication for your MS is entirely up to you. Find a good doctor specializing in MS, that you are comfortable with and follow your heart. You'll have your ups and downs but you're "not stuck". You have a family of supporters in all of us!

Permalink Reply by Caroline on February 24, 2011 at 3:57pm

Thanks for sharing your blog Erika!

Permalink Reply by Kelly on February 26, 2011 at 12:24pm

Thanks Erika!  I read your blog and love your sense of humor.  I live in Arizona too (Phoenix).  Nice to meet you!

Permalink Reply by rocken nana wwt on February 26, 2011 at 4:24pm

Kelly, I was diagnosed with either mini strokes or MS about 5 years ago.  Then on the 2nd MS MRI They said probable MS and I just kept falling, dropping almost every dish, running into things, slow down of walk and mind etc.  Now I am having another MRI on Monday 2/28/11 and see what is going on.  I have not been to a neuroligist for at least 4 years as the one I was going to moved.  But this next Thursday there is a seminar and testimony at a place 20 miles from here.  The guest I am taking or rather he is taking me as I quit driving because of Optic Neuritis, anyway he has MS worse then mine I think and he has been on shots, but not sure of the meds for

many years.  Then he moved from Denver to Ne. and he is doing pretty well.  He is my computer man when I need to update of crash or whatever.  He quit the shots for awhile and then went back on and then quit again and now back on.  The speaker at the seminar will be his Neuroligst and that is who I will try and see depending on the MRI.  We treat the symptoms (my Dr ) and that is all I do for now.  Now I am having such a problem with my feet my Dr. put me on a very mild pain killer at bedtime.  They start to get better and then in the next minute they hurt again.  Anyway no advice except to see a good dr. and you and dr. have to decide what is best for you.  I have so many other health problems that it is hard to treat them all without having lots of problems.  rocken nana

Permalink Reply by Caroline on July 4, 2011 at 6:53am

How are things going now for you Kelly? I see your orginial post was a year ago.

Permalink Reply by Lori Spector on September 25, 2011 at 4:31pm

Kelly,

I have had it for 14 years and have been on Avonex and Rebif.  I now do a monthly infusion of Tysabri...NO side affects and is supposed to be better than the rest, so far.  My friend just started Gylenya (pronounced jill-n-ya)   which is a pill!  I don't know much about it but it's better than injections so look into it.  Get a good neurologist and ask him tons of questions.  (write them down 1st) and don't delay starting some kind of treatment.  Don't be scared-take care of yourself, surround yourself with good people and you will be ok.  Call your local MS society to see what they have to offer.  People with MS seem to be a friendly and strong bunch...you have joined a good group of people! <3

Permalink Reply by Ann on April 3, 2012 at 5:59pm

My thoughts and prayers are with you!

Permalink Reply by Michelle on April 10, 2013 at 5:00pm

Hi Kelly! Take your time before you make any decisions right now....so overwhelming where you are right now...been there done that!,...breathe.......10 years symptoms 5 years officially diagnosed....had to go 5 years of proving to docs that I had ms and that I am not an over stressed mom........on meds 6yrs....currently I have decided to heal my body and mind myself...felt docs never listened....switched 4 times diff. Docs....totally went green with food...this is what is working for me....vegeterian...gluten and dairy free...been off meds 12 weeks...never felt better.....again this is what works 4 me....totally meditation daily...appreciating every minute of everyday....I am so blessed......got into breathe therapy....hypnotherapy...acupuncture eating clean..and now 29day giving challenge.....life is good....listen and be present to yourself......xoxo

Permalink Reply by Caroline on April 10, 2013 at 5:21pm

Welcome to the group Michelle!

That is great that you found something the works for you and that you are feeling great!