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HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (109,230)
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9/10/14 12:23 A

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Welcome back Tracey! Congratulations on the success, Victoria

"A reminder to walk comes from one heart to help another." Me
ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,304
9/9/14 8:11 P

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Welcome home! Glad to see you're back!

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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BLUE7684's Photo BLUE7684 SparkPoints: (19,497)
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9/9/14 6:29 P

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Hi Everyone: My name is Tracey and I was diagnosed with MS in 1998 at age 14. Currently I am taking Gilenya and doing well on it. I am new to the group, but joined SP in 2013. In 2012, lost 35 pounds with exercise and healthier eating habits. Refuse to let MS limit what I can do!!!!

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HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (109,230)
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6/27/14 11:32 A

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welcome back Jen, nice to have you on the team emoticon

"A reminder to walk comes from one heart to help another." Me
ESMERELDA1220's Photo ESMERELDA1220 Posts: 3,304
6/27/14 10:29 A

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Hi Jen!
Glad you came back...I love spark People and, although, I gained weight back, it helped me stabilize myself and start loosing again. Everyone is quietly supportive and enthusiastic...I also belong to "Doing it with MS" and that is a good team too...
I have RRMS and had symptoms of it for many years, but the docs couldn't figure it out...I kind of knew what it was and, finally, I was diagnosed at age 60. It is highly annoying at times, but I was able to stop working because I had cognitive issues I couldn't nurse...not to mention wanting to fall asleep at the drop of a hat! LOL!
Welcome!
Ezz

Ezz woman

Strong yet fragile...
To sin by silence makes cowards of men...Abraham Lincoln

Give unto others as you would have others give unto you...

There is a reason and a purpose to everything in life...


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MAPGEEK's Photo MAPGEEK SparkPoints: (19,712)
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6/27/14 10:20 A

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Hey everyone. My name is Jen. I'm a sparker from way back, but haven't been on in quite a few years. In that time I was diagnosed with RRMS. I'm hitting a lot of "a year ago today's" that will culminate in my one year anniversary of the Dx on July 19. Right now it's the week that I had an lumbar puncture, started infusions and had a blood patch that failed. I'm much improved and have not had another relapse, although my symptoms flair from time to time. While MS was a devasating Dx, I'm grateful for many things. It's not a tumor, I'm not dying, there are ways to cope, the treatments are far better than they were if I had gotten it years ago, etc...
Anyway... Hi.



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HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (109,230)
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5/2/14 8:49 P

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Welcome LaCie

"A reminder to walk comes from one heart to help another." Me
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2/9/14 12:17 P

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Hi, I am Lacie..so happy to have found this team. I had my first symptoms of MS in 1973 right after the birth of my son.. I went through all the symptoms, foot drop, numbness in my face and hands.. this went on for years the symptoms. coming and going, changing each time..I finally got my diagnosis after many tests

I try to stay positive through all my range of emotions. I now walk with a walker when I am not in my wheelchair..so glad to meet each of you

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1/31/14 1:25 P

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I have been looking for an active MS forum on Sparkpeople for quite sometime now and am hoping that this will be it.

I am 31 years old and live in Dryden Ontario - Canada. I was Diagnosed with MS in 2009 after going through symptoms that got passed off as one thing or another for about 4 years before that. It took an optometrist which noted optic neuritis, to give an ER doctor crap for not recognizing my symptom history to get any movement on doctors taking me seriously.

My last flare up was during this Christmas where I lost feeling in my left leg I was treated with high dose steroids which helped a little but I am still waiting for it to return to normal.

I'm going in for another MRI next weekend to hopefully qualify for 2nd gen medications which will mean no more injections.

I am looking forward to sharing this journey in health with other people that have the same issues that I do so I really hope this forum winds up being more active than the other MS forum I joined.

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ONEBUSYMOMMYOF3 Posts: 27
1/12/14 8:58 P

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Hello from the frigid north!

I'm Amy and I live in the Twin Cities area. Originally from Omaha, NE. I am married and have 3 daughters. I am going to school for a Business Admin/Marketing degree with the goal of becoming a Small Business Consultant.

I was diagnosed with MS in 2005 with my primary symptoms being numbness and weakness. It subsided by mid 2006 and due to inactivity since then I was declared 'benign' in 2012.

3 weeks ago I started feeling pain and pressure behind my left eye and within a few days my vision was blurry. I thought it was just a sinus infection, something I'm prone to. I ended up in the ER due to severe pain and pressure and was treated for an atypical migraine, which I've had before, and released. But my vision issues didn't stop. I went to a vision office in Walmart and was told my eyes look completely normal and was referred to a neuro-ophthalmologist for possible Optic Neuritis or Neuropathy. I have an appt this Wednesday.

Otherwise, I am okay. I work full time, go to school online and workout, though the vision issues affect my depth perception so my exercise is a bit limited now.

Anyway...that's me in a nutshell. How are you?

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SETTIMIA's Photo SETTIMIA SparkPoints: (85,947)
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10/30/13 7:49 P

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Thank you so much DAWNUH I really appreciate it. I have been saying this for years.

I have met such a beautiful person, with such determination, and even though as you know with MS, time can be so limited with all the organisation of daily chores and waiting for carers to come and help..........maybe you are right I can be used as a scribe to tell this amazing life history.

Your encouragement means a lot to me

Grazie mille (thank you)

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DAWNUH's Photo DAWNUH Posts: 7,010
10/30/13 7:15 P

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You're very welcome! I continue to learn so much through this great team - highs and lows in their lives as well as the occasional joke. Love those! emoticon

Hearing about others and the stories they share is Awesome. I think writing about your friend's struggle and triumphs would be an easy Best Seller. I know I'd buy it!! emoticon

What I am looking for is not out there; it is in me.

-Helen Keller

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10/30/13 2:56 A

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Thank you so much DAWNUH I will ask her, I have known her for 17 years and have always maintained that her story will help and touch others.

Really pleased I can join this team and learn so much

emoticon

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DAWNUH's Photo DAWNUH Posts: 7,010
10/29/13 6:56 P

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Welcome, SETTIMIA!
Your friend sounds like such an amazing and inspirational woman!! I love hearing good things about others, no matter if they have MS or not. She's an inspiration for sure. Perhaps you could write about her story, or ask her to share it with others!
I think you're doing a great job cheering her on, and we all need that at times! emoticon

Thank you for sharing with us!! emoticon

What I am looking for is not out there; it is in me.

-Helen Keller

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10/29/13 7:05 A

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Hello

I hope you do not mind me joining your group, but I have a very dear friend who has MS, she has had it since the age of 17 and now soon to be 40. She used to walk with a walking stick but now no longer walks or has use of her left arm.

She is the most amazing woman I have ever met, and nothing stops her. Her beauty is inside and out, and a such a wonderful adopted sister.

She embraces life, and focuses on what she can do not want she can not do. Although has carers she uses a scooter to move and has a specially adapted car and drives. She sings like an angel has written her own album, is a wonderful cook, in fact whenever she puts her mind to, she excels.

My friend teaches me so much, and I am humbled to by her determination, whenever I am reluctant to get out of bed, I think of my friend, who with limited movement, takes big steps to get herself from the bed to the scooter.

I am here to find out how I can be more of a support, as I do not live near her, but in contact regularly

Thank you for your time, have a blessed day.

Edited by: SETTIMIA at: 10/29/2013 (07:07)
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MOMO7YROLD's Photo MOMO7YROLD SparkPoints: (44,684)
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10/20/13 5:41 A

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Thank u Dawn, for the warm welcome. emoticon
Theresa emoticon

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I can do it, You can do it, set ur mind to it.
fall down, get up, dust off, move on


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DAWNUH's Photo DAWNUH Posts: 7,010
10/19/13 1:14 P

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emoticon to the group!!
I also have MS, and was finally diagnosed after running away from the "you may have it" message I had gotten from a neurologist 10 years ago. I had finally stopped running from the truth 2 years ago. I am thankful for the medicines available to us and continue to work as a high school teacher. My fatigue kicks me in the butt on weekends, where I enjoy doing Very Little and sleep away. We are champion sleepers I know. emoticon

Great to have you join us! You will find caring and knowledge-filled people everywhere, and I tend to only trust those who are educated in our "great" illness and share with love. You will find that here! emoticon

What I am looking for is not out there; it is in me.

-Helen Keller

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10/19/13 8:19 A

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emoticon , My name is Theresa. I was diagnosed with MS due to a tingling in the center of my spine that would not go away after complaining about it for several months and then having an episode where I thought I had a stroke or seizure and I also was very tired and slept alot. I was sent to my neuro and had an MRI and was shown the leisions on my brain. I went into a deep depression bc I watched someone die of a very long and bad case of MS, she was wheelchair bound and could not talk eat or drink. I thought instantly that was my outcome. I slept my life away for 2 yrs and gained 50 lbs of the 70 lbs I had lost prior to the diagnosis in June I decided enough was enough and I started exercising and lost some weight approximately 20 lbs so I rejoined SP in August and have lost another 24 lbs and am very active when able. I have alot of times when I'm just too tired to do anything and too achey to do anything. Glad to be here and moving. Looking forward to getting to know some people here and gaining more info about the disease. Have a great and healthy weekend everyone.
Theresa emoticon

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ndividual.asp?gid=60848


leader of SP Class Oct 27 - Nov. 2 2013 team www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=60747


leader of North Central WV team www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=41616


I can do it, You can do it, set ur mind to it.
fall down, get up, dust off, move on


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AWESOMECHELZ's Photo AWESOMECHELZ SparkPoints: (30,605)
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10/7/13 2:34 P

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I started with RRMS at the age of 24 and I am 50 and now, slowly it's going secondary progressive. What helped me when I got MS was that I was young and was determined to live my life my way. I read all the books, at the time, written by Bernie Siegel, MD, and some from Norman Cousins and they changed my life.

Now I have some holes in my brain an it has shrunk some BUT I still live independently, alone and just live my life with humor, Faith, friendship and hope. I also believe in God. I am saying this because there is a very strong component to health in our thoughts and attitudes. As a young person, I didn't want my life to be defined my this illness and have kept that attitude. Now , though, I am aware of my limitations and work with them too to make my life the best that I can.

You will find as LOT of positive people here in our team an in SP to live your life the best you can so go for it, my friend, and emoticon emoticon emoticon

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NYKOLEL's Photo NYKOLEL Posts: 608
10/7/13 12:13 A

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Thanks for the input. i know that MS can be a handful with the ups and downs or like me with primary progressive it will only get worst. the reason that i have great attitude is because my strength comes from Jesus Christ. God is my refuge and yes MS can take the best of you both physically mentally emotionally when that happens i turn to God. when i first was diagnosed with MS my left leg from hip to ankle was in a lot of pain i could barely walk and i keep tripping over my dog (poor thing emoticon ) but God has healed me from the pain and i know that He will me from MS all i have to do is wait

i really dont care what people think of me because 99.9% times they are totally wrong and .1% times they are right half the time they get that wrong



through Christ all things are possible



the only person that can will and shall judge me is GOD









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AWESOMECHELZ's Photo AWESOMECHELZ SparkPoints: (30,605)
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10/4/13 8:43 P

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emoticon Stefani! I have never taken that medicine either but, like Dawn, I will probably need it in the future. You've a great attitude about your MS. I also believe living the best I can no matter what the MS does. emoticon

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DAWNUH's Photo DAWNUH Posts: 7,010
10/3/13 8:20 P

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Hello Stevani! emoticon
I have not tried Amprya so I will not be able to give any good feedback. Sorry! I have relapsing/remitting MS, so my symptoms come and go. Over time, I may be looking to Amprya as well, so any information would be good to have. Great question to ask!

emoticon

What I am looking for is not out there; it is in me.

-Helen Keller

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10/3/13 1:02 A

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hi emoticon my name is stevani i have been diagnosed with MS for 2yrs my MS is primary progressive which means its that it will progress. but im not going to let it ruin my life i can do a lot i can bath myself clean up and i can even drive. the problem it have is my walking i have to use walker. im curious about Amprya walking pill i wonder how the pill actually work. so has anyone been on Amprya. what are the side affects does it really work. thanks

i really dont care what people think of me because 99.9% times they are totally wrong and .1% times they are right half the time they get that wrong



through Christ all things are possible



the only person that can will and shall judge me is GOD









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AWESOMECHELZ's Photo AWESOMECHELZ SparkPoints: (30,605)
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8/22/13 8:43 A

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Hi Erin! emoticon

I can relate to a lot of what you shared. I have tried all the MS meds except the cancer ones. I was JC positive but since I have had MS since the age of 23 (I am 50), I decided to try it anyway. I had an anaphalactic reaction so I am very allergic to it. I hope it works for you. emoticon

My major symptoms are vision, cognitive problems, fatigue, heat intolerance, and pain too. I am taking Cymbalta for the pain and it WORKS! The medicine was originally for pain but they learned that it helps with depression so it is for both. My pain was extremely debilitating and now, I am okay. I had tried some very strong meds and nothing worked until Cymbalta.

You have a lot of courage being a single mother and wanting to work hard on yourself. I hope you will feel supported here and God bless you with your goals. At least you know that we get it, that we know what it is like to have MS. Take good care and have a wonderful day!

Love, Chelsea emoticon emoticon emoticon

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DAWNUH's Photo DAWNUH Posts: 7,010
8/21/13 5:44 P

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Nice to meet you, Erin! emoticon

Your history with Copaxone sounds a bit annoying! I was on Copaxone for about a year and a half and was advised to move on to Tysabri. I was a bit skeptical as well, but I had nothing but good vibes to share on that one - it seems to be working well for me! emoticon
The symptoms I have with my MS is general fatigue and forgetfulness/loss of some memory. Junky stuff for me, but with my meds it seems to be getting better. Yay!
I was diagnosed with a "maybe" about 15 years ago. And just a couple of years ago, it was confirmed as a "yep, you've got it!" I like having the confirmation - good for me and good for my psyche. emoticon

It is so great to meet you and I encourage you to continue to reach out throughout this site. Nothing but love and support around here. and that is So Needed!! emoticon

What I am looking for is not out there; it is in me.

-Helen Keller

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8/21/13 8:59 A

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Hi all! My name is Erin and I was dx with MS at the age of 25 after 3 years of symptoms. I had been in the Air Force at the time, and the MS did cost me my career. I was very active prior to my dx, but due to some of the symptoms I was experiencing, I became much less so. Now 2 kids (ages 10 and 5) and 12 years of a less active lifestyle later, I have some weight to lose. I am working on reclaiming my life. As a single mother, time and energy can be a challenge for me, and the MS doesn't help either! I did recently participate in the MuckFest MS in Detroit and had a blast even though I finished towards the end of the pack (924 out of 1000!!) So I would like to get in better shape before next year's so I can redeem myself :)

So for the MS, I have been on Avonex, Betaseron, and Copaxone. I don't respond well to the interferons, and the MS seems to be immune to the Copaxone at this point. I am also so full of lumps from the shots, it is hard to find a place to use. Seemed like the more weight I lost, the more the injections affect me. Tomorrow I have an MRI and will be starting Tysabri. I am both nervous and excited. Only having to do it once a month seems wonderful, but well aware of potential risks. I am JC neg, so at least that is good. My biggest issues from MS are fatigue, numbness in hands and feet, and pain. I have had periods where things were much worse, so I am grateful that this is the extent it is affecting me currently.

I am thrilled there is a group for us MSers to support each other!

DAWNUH's Photo DAWNUH Posts: 7,010
8/17/13 10:15 P

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Greetings, Ronda! As Ocean_Mist stated, you will find many friends in this group. I continue to be delighted with the positive vibe felt throughout. emoticon
Your 18 month old grandchild sounds awesome - I'm not at that point in my life, but enjoy seeing young ones out in the world. Their smiles and wide open stares delight and thrill me to no end. I love the positive vibes! emoticon
I am also taking Tysabri infusions, and it is working well for me. I hope it continues to work well for you!
Enjoy your weekend and know there's lots of love to be felt here! emoticon

What I am looking for is not out there; it is in me.

-Helen Keller

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8/17/13 8:33 A

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Hi Ronda! We are friends in another team and here you are too. emoticon I hope you will feel welcome here and feel comfortable participating in the threads or new ones. God bless you and have a wonderful weekend! emoticon emoticon

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HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (109,230)
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8/13/13 10:06 P

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Welcome Ronda

"A reminder to walk comes from one heart to help another." Me
HANNAHSGRAMMIE's Photo HANNAHSGRAMMIE SparkPoints: (68,672)
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8/13/13 9:58 P

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My name is Ronda, and I live in Louisiana. I was diagnosed with MS at the age of 40. I am a 55 year old retired/disabled middle school computer teacher. I have used MS as an excuse, but now I've decided to do something about it. In May, 2008, I fell and broke my ankle. I had major MS episodes along with the severe break, so I ended up in a wheelchair for a couple of years. I was in a downward spiral, so I was sent to a MS specialist in Charlotte, NC. I lived in NC at the time. Anyway, since no other medicine worked, they put me on Tysabri monthly infusions. I've been on that since February, 2009. I finally graduated to a walker. Now, with God's grace, I'm only using a walker when I go out of the house. I enjoy writing Christian devotionals. One of my most helpful (according to the readers) has been a study on Trusting God; Conquering Depression: Bible Characters who Suffered from Depression. I have never been in such a depression, and I prayed that if God would just get me through it, that I'd share my experience to help others. Quite frankly, I was tired of people having the attitude that if you're a Christian, you can't get depressed. I was a pastor's wife and have been a Christian since the age of eight. It can happen. I stepped out in faith to write the articles for my church. Since I was a pastor's wife...what would people think?? I know that God is control and His Will is best. Depression has nothing to do with faith. In my case, it made me rely on God even more. Well, enough about that subject. On a much more positive note, I am a proud first time grandmother of the most wonderful little 18 month old girl in the world. She keeps me "hopping."



Blessings,

..*) ♥.*)
(. .♥ (. .♥ (.*`* ♥☆.*`*♥☆.*
`*♥☆ Ronda, the lady with MS (The Master's Strength)
..*) ♥.*)
(. .♥ (. .♥ (.*`* ♥☆.*`*♥☆.*
`*♥☆

Hopeful Hearts Breaking Free From Hurts, Leader

I can do all things through Christ who strengthens me. Philippians 4:13


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4/25/13 2:18 P

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by the way, what does your username stand for if I might ask?

"A reminder to walk comes from one heart to help another." Me
HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (109,230)
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4/25/13 2:18 P

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Kate, so very nice to read your post. I only wish more members could see this. Do you mind if I link your post in a team message? Victoria (hiketoheights)

"A reminder to walk comes from one heart to help another." Me
KNITTENMOM1's Photo KNITTENMOM1 Posts: 50
4/23/13 10:38 P

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Thank you so much for working for us!! We appreciate it so very much!!! :)

Good luck!! Everyday is a new one!!


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RIDELIKEAGIRL1's Photo RIDELIKEAGIRL1 Posts: 23
4/23/13 10:30 P

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That's a hope we all have to hold on to, right? Our cure is coming.... I go out for the Rona MS bike tour every year in hopes that one day there will be no need for rides or walks or whatever cause the "search for the cure" will come to an end. At least that's the story I tell myself when I don't feel like turning the pedals anymore... I ride for myself, yes, but more so I ride for all those who can't. Last year was my 6th year doing the bike tour, and the hardest one yet. Every year prior we rode the full 75km in the rain. Last year, after struggling most of the summer with the crazy heat and humidity Ontario faced, the tour was no different. HOT, but quite breezy. Both of which made it sooooooo hard, but we just kept turning the pedals until the end.
The cure is coming friends... Don't ever give up hope...

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KNITTENMOM1's Photo KNITTENMOM1 Posts: 50
4/23/13 5:44 P

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Good luck!!! I am on Tysabri and it has helped but I worry about the side effects! Just keep informed"!!

Good luck!! Everyday is a new one!!


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DAWNUH's Photo DAWNUH Posts: 7,010
4/23/13 5:40 P

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Yay Kate! I love your positive attitude - it'll continue to serve you well, I'm sure.

I also was on Copaxone for awhile, and my neurologist wanted me to go onto stronger meds. So now I'm doing the monthly injection of Tysabri. It helps me with my fatigue and no injection marks afterwards, so I will continue on. emoticon
Can't wait until a true cure is found - I'm sure it's on the way, right?!? ;) emoticon

What I am looking for is not out there; it is in me.

-Helen Keller

KNITTENMOM1's Photo KNITTENMOM1 Posts: 50
4/22/13 10:28 P

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I am very proud of you and I know you can do it!! You have MS but it doesn't have you!!! Fight on!!!,,

Good luck!! Everyday is a new one!!


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RIDELIKEAGIRL1's Photo RIDELIKEAGIRL1 Posts: 23
4/22/13 9:45 P

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Hi I'm Kate. New to this group, but no stranger to MS. I was diagnosed in 2005, at 22, after hobbling around for a week with the right side of my body numb. After a few years of avoiding the disease modifying treatments, my relapses had gotten to the point of occurring every 6 months and I caved. Started with copaxone which I managed quite well, other than the site reactions which I know is very common. Lasted 2 years with that treatment before my neuro told me my MRI suggested it wasn't as effective as he would like, so we were switching to a stronger treatment with Betaseron. Much more work! I wake up shivering and feeling flu-ish the nights after taking Betaseron, but I'm told my MRI looks better so I deal with it. The fatigue is exhausting :p I also have been diagnosed with central neuropathic pain, which I find to be the hardest part of this disease... But what can we do? We have to keep finding reasons to smile. Keep finding the things that make our lives happy and enjoyable. Finding the good things that outweigh all the pain and frustration MS brings... I'm a fighter. MS won't win this one ;)

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KNITTENMOM1's Photo KNITTENMOM1 Posts: 50
4/19/13 6:35 P

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I listen to music all the time and I do read inspirational thoughts quite a bit!! Thnaks so much for your help!!!!

Good luck!! Everyday is a new one!!


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HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (109,230)
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4/19/13 6:31 P

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Hello! Welcome back to the team & Spark. Most of the team post their medical experiences on the message boards so play around on them. It is a great way to get to know the members of the team. I find music makes ne cheery do you try that to cheer you up? Also, I do plenty of daily inspirational reading- that would be posts that tend to create positive feelings. Do you engage in any of that?

"A reminder to walk comes from one heart to help another." Me
KNITTENMOM1's Photo KNITTENMOM1 Posts: 50
4/19/13 6:24 P

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Hi!!! I am not new to the group but I haven't been here for awhile! I have missed all of you and hpe we can be friends again!! I had Total Knee Replacement the 27th of December and I am still hopling around a little!! I hope it helped but I think it is too early to tell! It has messed up with my MS a little but I also hope that goes away!!
We are still waiting for some warm weather here and I think that would help with the depression!
I take Tysabri and I have for almost five years, I am positive for yhe JVC virus and I have had a cancer treatment but my Dr. doesn't seem to interested in changing my meds so I might change Drs.!!!!!!
Well I hope all of you have a wonderful day or evening whatever it may be!!!!! :)

Good luck!! Everyday is a new one!!


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3/29/13 1:59 P

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Welcome Joanna! You will find we have quite a few members who share their medication experiences as well as exercise and challenges on the message boards. I would friend these people and get to know them so you can share ideas and experiences with them. If you need any help, have any questions, feel free to contact me. I am co-leader of this team. Victoria

"A reminder to walk comes from one heart to help another." Me
DAWNUH's Photo DAWNUH Posts: 7,010
3/29/13 12:58 P

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Great to meet you Joanna!
I was also diagnosed with RRMS 15 years ago, and more recently this was confirmed and I started on Copaxone. It was working well for me, but my neurologist suggested I go onto an even stronger medication and I have just recently started Tysabri. I am JCV negative, but they will continue to check this just in case that changes.
It is so great to hear from you - sounds like we are on very similar pathways through our MS adventure. The strength and support I have received through this group is wonderful and I am sure you will feel the same. We'll all Keep Pushing together!
emoticon

What I am looking for is not out there; it is in me.

-Helen Keller

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3/29/13 11:55 A

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Hello!!! My name is Joanna. I was diagnosed with RRMS about 7 years ago. Woke up the day after my wedding, at 21 years old, with two numb toes. After a few weeks it was my whole foot that was tingly then after a month started having trouble walking. Typical pins and needles feelings in the legs andmy right calf kept stiffening up when I would walk.

I was on copaxone for about 5 years with about 2 or 3 bout of solumedrol. When the Copaxone longer worked I was put on Avonex, had horrible side effects with the depression on that one and then was put on Tysabri. I have been on Tysabri for almost a year. I am JCV positive so my neuro will soon be taking me off of the Tysabri and switching to maybe BG12. But I am very happy that since I have been on the Tysabri I have not had any flare ups and my balance and coordination have improved so much more than I ever expected!!!!

Wishing you all the best emoticon

Edited by: JMCMAHAN731 at: 3/29/2013 (11:58)
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1/15/13 1:27 P

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Welcome grandmababa, nice to see you on the team & I love spark too!!!

"A reminder to walk comes from one heart to help another." Me
DAWNUH's Photo DAWNUH Posts: 7,010
1/12/13 7:00 P

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Welcome to the team, GRANDMABABA! I love your name - shows such positive spunk. emoticon
Thank you for sharing your story. You have definitely come a long way. Very impressive! I have been recently diagnosed and am very pleased with how far medicine has come for us. I want it to keep coming! We all do, I'm sure.
I am happy you found us, you will be a great addition to the team. emoticon

--Donna

What I am looking for is not out there; it is in me.

-Helen Keller

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1/12/13 4:05 P

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emoticon GRANDMABABA! What a beautiful, hopeful story. Thanks for sharing! AND congratulations on having such a beautiful family. I am glad you found us too and I hope you can make friends here and support to exercise. I got diagnosed with MS in 1985 so, like you, I have had for a few years. Good luck with all your goals! emoticon Chelsea emoticon

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GRANDMABABA's Photo GRANDMABABA SparkPoints: (128,299)
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1/12/13 3:40 P

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Hi, I just discovered this team. Your stories are so touching an there is a lot of good info and support here. I was misdagnosed for years. Docs were sure I had some sort of dystrophy because of the lifelong symptoms and rate of deterioration after my second child was born. The ms diagnosis came in '95 and the injections have helped so much. I have spent time on wheels and with a cane. For nine years I couldn't even walk a block, so frustrating. Then, suddenly I was able to walk pretty easily and did two miles that first day. Sich a blessing. In March it will be nine years that I can walk and I certainly pray for many more. The cognitive struggles forced me to quit working in 2001, but I am active in several volunteer areas and spend as much time as I can with our three nearby gks. Some days are better than others. I also deal with fibromyalgia, arthritis and migraines. I believe all are related. I'm 60 and I've been married nearly 40 years, have two children and five grands. Life is good! Love SP!

Edited by: GRANDMABABA at: 1/12/2013 (15:40)
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1/11/13 12:39 P

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emoticon SMITHE2383! You will find a lot of support here and in Spark People. They also have other teams/groups for people who exercise sitting down and for people with disabilities. I would search under the words "disability", "chair exercise". I wish you the best of luck with everything and I hope, most of all, that you find hope and friendship here. emoticon
Chelsea emoticon

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HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (109,230)
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1/11/13 9:50 A

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Welcome, not sure I caught your name! Great intro, very informative. I would start with reading Melly's blogs. She has the whole exercise routine down perfectly. She is pretty awesome too.

We try to read team member blogs as we learn from them. Message boards are a great way to connect with other team members. Esmerelda is extremely helpful also. Reach out to others on the boards & you will get answers. Let me know if I can help.

One other thing, add them as a friend- it helps you ton stay in touch. Add me also please. Victoria

Edited by: HIKETOHEIGHTS at: 1/11/2013 (09:50)
"A reminder to walk comes from one heart to help another." Me
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1/10/13 11:06 P

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Hi there! Just joined sparkpeople after seeing it in a Costco magazine. I had never heard of it before but absolutely love it!

I am trying to lose the weight I gained from being paralyzed twice from NMO and the multiple steroid treatments I've endured. NMO is similar to MS (in fact they used to think it was an extreme form of MS) so I figure you guys will understand what I'm going through.

One of the biggest challenges I have now with trying to lose weight is finding exercises I can do. I still have partial paralysis in my legs and the disease took away all my balance so I tip over and fall easily. All I have been able to do is walk on a treadmill at 2mph/10%. Anyone have any other ideas? I used to love the stair stepper and stair climber but now I'm afraid I'll tip over on the stair stepper and that my legs will give out on me on the stair climber. I do have a gym membership so there's quite a variety of machines available to me.

Thank you all!

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DAWNUH's Photo DAWNUH Posts: 7,010
1/8/13 7:23 P

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Welcome!
Geez, our bodies can do so many bizarre things giving all sorts of bizarre reactions for us to weed through, can't they? emoticon
I think if we spend too much time and concern on these things, there's just Way Too Many things we can come up with. Ugh!

My mom is the owner and operator of a health food store that carries all sorts of vitamins and pseudo-remedies for things. Whenever she is asked about how something works, she will simply relate the documentation and information she has found. After that, she will relate if she has tried something and how it worked for her. Keep in mind, it works differently for people. So keep your mind open and be willing to keep looking. Whatever it may be, you will come across the answer for it. Just emoticon !
I have had to go forward on this trek as years ago I was convinced that the doctors were just full of it. After taking more B vitamins and some anti-anxiety medications, I woke up to realize that A) they were right about SOME things, and B) they were NOT right about everything! I have faith that you will reach the answers you are looking for. There are many wonderful and amazing people here that will offer a shoulder for support. emoticon

emoticon

Edited by: DAWNUH at: 1/8/2013 (19:24)
What I am looking for is not out there; it is in me.

-Helen Keller

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12/30/12 11:06 P

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emoticon to the team and Spark People! When I had my symptoms with no label or explanation, I felt just terrible. Once I got the label of MS, believe it or not, I felt hope because now I could do something about it and I knew I wasn't crazy or all in my head.

There is hope and just because you have MS doesn't mean you can't have a wonderful life or exercise, etc. I have had it since 1985 and I am still living independently. Of course, I do have some limitations but don't most people as they get older from one thing or another? So, now you are here and can continue with your goals and living your life.

Hang in there and keep on talking to others and keep your goals up front. You will do great! emoticon (And nothing wrong with crying once in a while; all part of the course for me too). emoticon

Have a wonderful week and a great and hopeful 2013! emoticon Chelsea

Leader of "Inner Healing - Sexual Abuse" Team

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BABYDEB98's Photo BABYDEB98 Posts: 2
12/30/12 7:47 P

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I've been having unexplained pains and numbness off and on for the last 2 years since having a seizure. Even back then, they could not figure out what was wrong with me. The last year I have been seeing multiple specialists trying to just feel better. Finally got referred to a new neurologist about 6 months ago, went through the various tests (MRI's, bloodwork, spinal tap...), and was diagnosed with MS on November 12, 2012... actually the day that my neurologist retired. So, now I know WHAT it is, but now I've been trying to figure out HOW to deal with it (without a neurologist). I don't want to be on medications, but I also don't want to be in pain everyday. It's to the point where I am mentally drained and just tired all the time. I WANT to get back in to shape physically AND mentally... I make plans to do things and then, days/weeks later, nothing gets done. I just don't feel like doing anything, besides sleeping. Sleeping is good (when I am able to sleep through the whole night). I am hopeful that I can get through this.

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12/15/12 2:52 P

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Welcome to the group, Carol! emoticon
We are happy to have you join us. Thank You for your great work with aquatics with those who need it! That sounds awesome and I will want to look around to find a program offered close to me. Sounds awesome! emoticon

Again, welcome and feel free to keep posting - we'll love it!!

What I am looking for is not out there; it is in me.

-Helen Keller

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12/15/12 12:52 P

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Hi Carol! Welcome! emoticon Thank you so much for your work with people with MS and I am sorry about your friend. If you ever have questions and want an MS person's perspective, let me know (or the team too). I would gladly help. Have a wonderful holiday season! emoticon
Chelsea emoticon emoticon

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