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MAMABUGAZ's Photo MAMABUGAZ SparkPoints: (22,581)
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2/8/14 8:50 P

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welcome, Shannon and Kim!

~ Faith
Leader: Doing It With Multiple Sclerosis;
Plateau Busters!!!!;

2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months;have gained.
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
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KIMOH62 Posts: 1
2/3/14 11:18 A

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Hi, I am going to try to give SPARK a try, I need some accountability! Diagnosed with MS in 1998. My symptoms, as usual, have run the gamut from blind in one eye, and wearing diapers, to being able to be back jogging! Currently, I can walk pretty well unassisted (looking like I've had a few), use my cane, and use my walker when I will be walking for a while or on something uneven. I exercise at the gym, but food is my big concern now. I am off to Tysabri #61 this morning. On my way to eating better and more!

CD13361234 SparkPoints: (23,666)
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1/21/14 5:27 P

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Hello. I am Shannon Cullen and was diagnosed with RPMS in October. I am currently learning about the disease and proud to be part of this forum!

MAMABUGAZ's Photo MAMABUGAZ SparkPoints: (22,581)
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10/17/13 1:01 A

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welcome LINRN. I can't answer your question about BG12. I`m on Copaxone.

~ Faith

~ Faith
Leader: Doing It With Multiple Sclerosis;
Plateau Busters!!!!;

2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months;have gained.
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
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127.5
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LINRN1203 Posts: 4
10/16/13 4:51 P

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Hi all!

I too have MS - diagnosed in 2010. Is anyone else on BG12 (tecfidera)? I was was Copaxone until June when I had one of those 'rare, adverse' reactions. No fun! So far I love the tecfidera except I've gained about 10 lbs - uck.
My biggest symptoms are blurry/double vision, balance and an occasional bout with trigeminal neuralgia. Last exacerbation was in Dec '12. Fingers crossed!
Looking forward to reading back and getting to know some of you.

ALYSSACOLLINS SparkPoints: (0)
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10/10/13 8:38 A

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Hi everyone!
My name is Alyssa I was just diagnose with multiple sclerosis this month. I am 19 years old and I have been having ms symptoms since 2010 (16 years old). Back then my symptoms were only extreme fatigue but now I am having more major issues. August I woke up completely numb from the waist down and recently woke up with such bad optical neuritis that in 3 days it progressed to total blindness in one eye and put me in the hospital. (My vision is about half way back now)

I used spark people before for a while and went from 225lbs down to 175lbs and now because I am on this prednisone I have gained weight back up to 188 :( I am feeling somewhat helpless right now and this weight gain is bringing me down even more.

Much encouragement is needed right now!
With love,
Alyssa

Ps, is anyone on tecfidera?

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NBUTLER91's Photo NBUTLER91 Posts: 1,703
9/29/13 10:22 P

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Hi to everyone on this team. I was dx'd with MS 6 1/2 years ago at age 53. I started to notice a tremor in my hands and could not tolerate heat at all. (That's a feat living in Texas in the Summer). Docs would always tell me I was having heat migraines. Even when I was in my 30's they told me this. Finally found the right doc and was told it was MS. I have been on Copaxone since then. Started SP 7/31 of this year. So far I have lost 9 lbs. Hope to talk to all soon.

Nancy emoticon

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AUTISMMOMMA05's Photo AUTISMMOMMA05 SparkPoints: (57,331)
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9/18/13 7:50 A

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emoticon to the team.
Good luck on ur journey and good luck and congrats on the wedding.
Theresa emoticon

Theresa-WV
Creator/Leader - Daily Fitness Challenges
www.sparkpeople.com/myspark/groups_individual.asp?gid=71235

I Can Do It, You Can Do It, We Can Do It!!!!
Fall down, Get up, Dust off, Keep Goin!!!!
Set Ur Mind To It!!!!


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BLONDIE0201's Photo BLONDIE0201 SparkPoints: (0)
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9/17/13 1:26 P

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Hello! I was diagnosed with MS officially in February 2011 (6 days after my 26th) birthday. My symptoms started in July 2009, but the neurologist I was seeing was reluctant to commit to a diagnosis for whatever reason, and it wasn't until I switched MS practices to the MS Center at Johns Hopkins, that I was officially diagnosed and started on Copaxone. It's been an interesting, sometimes difficult journey so far, but I have a very supportive fianc and an amazing set of family and friends to keep me going when times get tough. I started on Spark People a few years ago, before being diagnosed with MS, and lost A LOT of weight. Unfortunately, after I started having MS symptoms, my now ex-husband became freaked out and left me since it was too much to handle. The unexpectedness of this along with the shock of being diagnosed caused me to loose sight of my weight loss goals for a while and I gained everything back and then some. I am now determined to loose this weight in order to be healthy for my family and as an added bonus look great in my wedding dress next year.

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AUTISMMOMMA05's Photo AUTISMMOMMA05 SparkPoints: (57,331)
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8/23/13 7:03 A

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I apologize Propman. I have been in a whirlwind. Thank u for ur response to my intro. I have been very busy I started my own team called Daily fitness challenges team and it started bout same time I started with this team. The reason I started this team somebody recommended it to me I don't remember who it was. But anyhow the day I started it I had a bad cramp in my neck and it gave me a migraine and I kinda knew and kinda didn't (I suspected what it was) and I was right. My MS was flaring up I had the pain in the back of my neck and migraine for 3 days now it is gone. I see my neuro this coming Wednesday.
Any how I didn't mean to ignore u Propman I just didn't know u had responded. Thank U.
Theresa emoticon

Theresa-WV
Creator/Leader - Daily Fitness Challenges
www.sparkpeople.com/myspark/groups_individual.asp?gid=71235

I Can Do It, You Can Do It, We Can Do It!!!!
Fall down, Get up, Dust off, Keep Goin!!!!
Set Ur Mind To It!!!!


 current weight: 209.0 
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PROPMAN1 Posts: 4,486
8/21/13 1:55 P

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emoticon Happy you've decided to join us. Haven't been on as many meds as you (dx in 2000-01) but found Copaxone worked until I got really, really ill (not related to MS) and lost so much weight the injection sites were an issue. Have been on Avonex for years but am very tired of injections and my sites are reacting more than before. Hoping that I might get to try an oral medication soon (Tecfedera maybe).
Being a single mom with MS is no fun! Have only 1 child but there were definitely days that i was way too tired to be the cheering section but....we (like you) managed.
Wish you all the best with your meds!

Never Give Up! Never Surrender!


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RSHDVA SparkPoints: (703)
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8/21/13 10:51 A

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Thanks! I appreciate that as I don't know anyone currently taking it. My neuro is one of the best in the country and I trust his judgement, but he isn't the one taking it :)

HANNAHSGRAMMIE's Photo HANNAHSGRAMMIE SparkPoints: (84,640)
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8/21/13 10:26 A

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I have been on tysabri since feb 2009. Nothing was working for me it might as well have been water. I am doing the best I've ever been on tysabri. I was diagnosed in 1998 at age 40 but I had symptoms at least 10 yrs before. If u have any questions abt the med just ask. All the literature is so scary but they have to put that. I guess so they won't get sued. I am doing millions better. Welcome!!!!' Ronda

Blessings,

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(�.�� .♥ (�.�� .♥ (�.�*��`* ♥☆�.�*��`*♥☆�.�*��
`*♥☆ 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.


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8/21/13 8:54 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, not too mention I am having issues with running out of spots to use due to reactions. Seemed like the more weight I lost, the more the injections bugged me. Tomorrow I am starting the process for 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.

Well I think I have written enough of a novel, so I will just finish by saying that I am excited to be taking this journey with you all and look forward to getting to know you!

PROPMAN1 Posts: 4,486
8/19/13 9:57 A

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Sorry to hear about your sister. That's good that you've already lost so much of the weight gained. Be proud of yourself!! You can't allow MS to take control of your life any time soon. Keep taking your meds and take care of yourself. Being proactive is so much better than being reactive. Peace.

Never Give Up! Never Surrender!


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AUTISMMOMMA05's Photo AUTISMMOMMA05 SparkPoints: (57,331)
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8/18/13 3:10 P

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Hello my name is Theresa. I was diagnosed a couple yrs ago with MS and went into a deep depression and gained 50+ lbs back of 70 lbs that I had previously lost. I lost my sister about a yr ago and I decided enough, life is too short to waste she was 10 yrs younger than me. I'm 39 she had just turned 29 a week before she died. So I'm not wasting anymore time of my life dwelling on a diagnosis and I'm losing again. Since her death last Sept. I have lost 37 lbs since joining SP in Feb I've lost 21 lbs so I've only got 20 more lbs to go. I don't want to let the MS control my life. I haven't had an episode in about 2 yrs so keeping fingers crossed that I don't.

Theresa-WV
Creator/Leader - Daily Fitness Challenges
www.sparkpeople.com/myspark/groups_individual.asp?gid=71235

I Can Do It, You Can Do It, We Can Do It!!!!
Fall down, Get up, Dust off, Keep Goin!!!!
Set Ur Mind To It!!!!


 current weight: 209.0 
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CLESHER's Photo CLESHER SparkPoints: (34,024)
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7/16/13 10:01 A

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Hi Jackel05,

I am one of four in my family diagnosed with MS...I was diagnosed at age 20 with relapsing/remitting MS in 1992 right before my 21 birthday I am now 41...My father was diagnosed in 2001 with advanced MS. He went downhill quickly became quadrapelegic and passed away due to complications particularly aspiration in 2011 at age 67. His sister my aunt the youngest in the family also has MS and so did his cousin whom passed away in 2008. It is a terrible disease....

Nice having you on the team...

Cherrie

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PROPMAN1 Posts: 4,486
7/15/13 2:14 P

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WOW...you and your family have really taken quite a number of hits with this disease. I am sorry. Know this sounds trite but - do the best you can with what you have. I can relate to your 'memory issue'. Someimes people will tell me important things going on in their lives and 2 seconds later...i don't remember that we even discussed it. Many times I fake that it's remembered. Usually something they'll say will give me a brief hint. Working with the memory issue is a challenge. Sometimes i forget where i put the 'reminder'. Fatigue is always an issue. Somedays are better than others. Don't think doctors know about the role of heredity in this disease. Asked my neuro about it when i was diagnosed in 2000 but he said he didn't think it was but....no one knows for sure.

Last but not least: Welcome to SP and the Team!!!!!!!!!! emoticon emoticon

Edited by: PROPMAN1 at: 7/16/2013 (11:27)
Never Give Up! Never Surrender!


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LESSISMORE05 Posts: 6
7/15/13 1:43 P

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Hi! I came across this forum today and hope it will be helpful to me and that maybe I can be of some help as well ! I was diagnosed with relapsing/remitting MS at 24 . I am now 49 and my neurologist has said that I now have secondary progressive MS and took me off work just a year ago ( I was a registered nurse and was really struggling to keep the pace) I have become very sedentary and have gained weight . I have done really well compared to many people but fatigue has been horrible , restless legs , weakness etc.. one problem which has really affected me and curious to see if any of you have experienced , is that my memory has been getting worse - cant come up with the right word or phrase , I have to write down EVERYTHING or I forget so I keep a notebook in my purse and by the phone . I had a cousin that died at 42 with pneumonia secondary to her MS - she had primary /progressive MS diagnosed at 18 and never had a remission - her husband was a gem . my father also had MS and was diagnosed 6 months after me - did need a wheelchair - found he had to see his feet touch the ground as he couldn't feel them- limited use of his hands - lost him 5 years ago due to MI - my brother-in-law was diagnosed a few years ago (no other family history) and has been affected terribly (very similar to my cousin) is in the hospital and probably going to be in a long-term care home (he is 53) he needs total care - his wife works full-time and yet has looked after him very well (with help) but he now has a feeding tube as he was aspirating his food leading to pneumonia - my fear now is that my children now have the disease on both sides of the family and if they get it , may not be as lucky as me
sorry to be so long winded !!!! will stop now - thank you - I needed to put all of this in writing ! don't normally voice my fears !

PROPMAN1 Posts: 4,486
7/11/13 2:46 P

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Copaxone can change sites like that since it doesn't go into muscle. Had to give it up because i had been ill and only weighed 80 lbs. Had reactions with it too but not as bad as now. I have faith - it'll all work out.

Never Give Up! Never Surrender!


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MAMABUGAZ's Photo MAMABUGAZ SparkPoints: (22,581)
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7/11/13 2:34 P

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Propman --

I used to alternate between thighs, hips, arms and abdomen, when I was on Betaseron. I do things differently, with my MS Specialist's permission, now that I'm on Copaxone, due to site reactions.

~ Faith

~ Faith
Leader: Doing It With Multiple Sclerosis;
Plateau Busters!!!!;

2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months;have gained.
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
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PROPMAN1 Posts: 4,486
7/11/13 2:26 P

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My doctor never mentioned any other site except thigh. Thanks! emoticon

am hoping to get a tattoo with my 'never' quote. Unfortunately, it's from Galaxy Quest (a knock-off of Star Trek).

Never Give Up! Never Surrender!


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CLESHER's Photo CLESHER SparkPoints: (34,024)
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7/11/13 1:44 P

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Hi Propman1,

I love your quote never give up, never surrender!!!!

I used to use my legs now I use the muscles in my hip area...that helped me....just an idea....

Cherrie

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PROPMAN1 Posts: 4,486
7/11/13 1:40 P

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I alternate leg injection sites each week. If I have the same issue when I inject tomorrow night the doctor will get a call for sure. Believe mine began years ago when I fell while standing talking to co-workers for no apparent reason. Was standing in a group, chatting and suddenly - i wasn't standing...was sitting on the floor.
Thanks for your support and time. emoticon

Never Give Up! Never Surrender!


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CLESHER's Photo CLESHER SparkPoints: (34,024)
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7/10/13 4:20 P

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Propman1,

Are you alternating you injection sites?

Here is what the injection site says from the avonex website:

http://www.google.com/url?sa=t&rct=j&q=&
esrc=s&frm=1&source=web&cd=2&ved=0CDoQ
FjAB&url=http%3A%2F%2Fwww.avonex.com%2
Fpdfs%2Favonex-injection-guide.pdf&ei=
2cDdUf75LOSQiALBx4HABQ&usg=AFQjCNEHC4f
UKwLpWDCTNZdgmoQfWOKkwA

If the redness lasts for days you should call your doctor.... I am so sorry this is happening.....

My first initial symptoms occured as double vision when I was 17, they now feel this was the initial onset of my MS....My aunt has lost vision due to her MS....

Please take care and if you still are getting the lasting reness after switching injections sites please call the doctor....

emoticon

Cherrie

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PROPMAN1 Posts: 4,486
7/10/13 4:02 P

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CLESHER: You are amazing!! It's too bad you live all the way over there in CA. I'm on the opposite coast...MA. Have been trying to differentiate between what I can and can't control and just go with the flow. Right now i'm having an issue with Avonex. Have been on it for years but have noticed lately that the redness at injection site lasts for many days. The site from my last shot is still red and that was over a week ago. Spots never used to last this long.
My first symptom was loss of sight in right eye (went totally blind). Luckily my left eye is still good. Did prednisone IV and pill for a bit. Gained back some of my peripheral sight but my complete sight never returned.
I appreciate all your thoughts, ideas and hints. Thanks! emoticon

Never Give Up! Never Surrender!


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CLESHER's Photo CLESHER SparkPoints: (34,024)
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7/10/13 3:39 P

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Propman1

Even if you have to be the one to handle stress, know the difference from what can be handled and what is truly beyond your control....don't stress on the things that you have no control over....the ones you have to deal with find whatever it is that will alleviate the stress for you...perhaps a bubble bath (I have to take cool ones) or maybe your favorite music....take time to enjoy and celebrate the temporal....learn to again stop and smell the flowers...I say this because like Faith said stress can and will trigger attacks...anything you can do to minimize stress will help you ten fold....perhaps even yoga.....

Just some ideas...

Additionally, I know from experience that heat has brought on relapses for me, before I was on avonex...every year for 7 years after diagnosis....August would hit in CA and temps would sore into the 80-90 and even 100s...I would be back in the hospital and back on prednisone or IV steroids to counter act the accerbation.....After I got on avonex it has been much better...but I do know I cannot handle heat....I even bought a personal air conditioner from sharper image...

http://www.sharperimage.com/si/view/prod
uct/CoolWare-Personal-Cooling-System/1
00849

It really helps...

Everyone experiences different symptoms many are common but many are individual and they can change over time...

When I was first diagnosed I lost the use of my right side (arm, leg and speech) for 3 weeks. Diagnosed at age 20...I was on prednisone for about 2 months (they don't do this as a treatment any more, they prefer IV sol medrol (steroids) to counteract attacks....

When I was first diagnosed at age 20 I was a type A personality...procrastinated everything to the last minute...straight A student....over time I have learned to modify some of my behaviors....I no longer procrastinate things..that causes stress....I am still a type A, but definitely no longer hard on myself....

And yes, I mess up with my limitations and try to push hard sometimes, but it sets me back for days when I do...so it is not often....

Hoping some of what I say helps...

emoticon

Edited by: CLESHER at: 7/10/2013 (15:42)
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PROPMAN1 Posts: 4,486
7/10/13 2:37 P

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MAMABUGAZ: know you're right but some of those things are Very hard for me to do. Rarely do i say "no" because of tiredness or whatever....usually i'll drag myself to do what's needed. Have to say that sometimes i do wonder what will become of things if i can't do them.

Never Give Up! Never Surrender!


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PROPMAN1 Posts: 4,486
7/10/13 2:29 P

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CLESHER: 1. i know my limitations but i still push myself to not let them stop me
2. almost never get 8 hours. 6-7 is my usual.
3. provigil worked for a while then it stopped.
4. my hubby doesn't handle much stress...he leaves that for me.
5. this is the first year that heat has bothered me at all. usually, i love it

HANNAHSGRAMMIE: Thanks.

p.s. my computer had an issue so this may be a repeat message.

Never Give Up! Never Surrender!


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MAMABUGAZ's Photo MAMABUGAZ SparkPoints: (22,581)
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7/10/13 2:28 P

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Propman --

1. Don't fight your limitations. Learn to accept and adapt. Fighting through them can add stress to your life; stress can trigger MS flares and additional health issues.
2. If you can't sleep 8 hours at night, take naps. Get adequate rest.
3. I don't know anything about Provigil. Sorry.
4. I agree with Clesher -- eliminate stress. Sounds like you already do a better job at managing it than others in your household, but, learn to say "no" when you need to; be careful about what you say "yes" to. Deal with your own problems, but don't worry over them. And, DON'T take on others' problems; let their issues be "their" issues, not yours.
5. I don't know what the change in your heat tolerance means, but ... it is not unusual for heat to bother people who have MS. Although it shouldn't trigger a flare or permanent health issues, it can definitely trigger symptoms associated with a pseudo-flare. Stay out of the heat when possible. Find ways to cool your body, if it is not.

~ Faith

~ Faith
Leader: Doing It With Multiple Sclerosis;
Plateau Busters!!!!;

2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months;have gained.
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
180
162.5
145
127.5
110
PROPMAN1 Posts: 4,486
7/10/13 1:53 P

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HANNAHSGRAMMIE: Thanks.

CLESHER: 1. i try to fight through my limitations because i know one day i may not be able to. 2. lucky to get 6-7 hours. 3. provigil worked for me for a short time and then it stopped. 4. in my household i am the only person who handles stress. 5. this is the first year that the heat has bothered me...usually i love it. Wonder what that means?

Never Give Up! Never Surrender!


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CLESHER's Photo CLESHER SparkPoints: (34,024)
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7/10/13 12:11 P

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Ms fatigue how I have learned to control it having spent 21 years with MS....

1. How your limitations
2. Get at minimum 8 hours of sleep per night...
3. They have a medication called provigil (I do not use it as it gave me too much energy and I would tend to overdo things and not get enough sleep, which left me extremely fatigued, so I quit taking it)
4. Eliminate Stress (I simply don't stress over things anymore, I leave that for my hubby :) )
5. Stay out of the heat, heat can be a killer...

Hmmm...if I think of more I will post...

Cherrie

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7/10/13 12:08 P

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HannahsGrammie and Propman --

I'd love to get some more discussion started about MS fatigue and being so over-tired. A common symptom, for those of us with MS.

Check out the Exercise and Fatigue forum here: www.sparkpeople.com/myspark/team_mes
sa
geboard_thread.asp?board=18307x1904xR>46928269
, and feel free to share more about your tiredness and fatigue. I'll bet others will chime in!

~ Faith

~ Faith
Leader: Doing It With Multiple Sclerosis;
Plateau Busters!!!!;

2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months;have gained.
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
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CLESHER's Photo CLESHER SparkPoints: (34,024)
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7/10/13 12:07 P

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Hi Propman,

I was diagnosed with relapsing/remitting MS on Sept 17, 1992 a date that will forever live in my mind....Since 1998 I have been on Avonex and thankfully have not had any bad relapses...I got a new neurologist last year and he repeated my MRI since it had not been done in about 21 years and since the hospital no longer has my original films. When I was diagnosed at age 20 adn at the time they discovered 3 areas of sclerosis...this years MRI showed way to many areas of sclerosis however all are dormant. No flare ups....for that I am blessed....haven't really explored the new drugs as I don't want to change when something is working....

My father was diagnosed in 2001 with advanced MS....he went down hill quickly Copaxone and Betaseron did not work for him....he became quadrapelegic in 1995 and my husband and I were his full time caregivers until he passed away on April 19, 2011, he died of asperation at the hospital after refusing a feeding tube in December of 2010....he suffered very hard...and I am at peace knowing he is no longer suffering....He was only 67....I am now 41 and we had 4 in our family with MS, my Dad who has passed, his cousin Michelle who passed in 2009, his sister (my aunt) Gerogia whom is still fighting the good battle, and myself...

Anyhow I digress....looking forward to our journey together and hopefully one day a cure for MS....

Cherrie

emoticon

Edited by: CLESHER at: 7/10/2013 (12:08)
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7/10/13 11:59 A

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Welcome, Propman. Nice to have you here; come back often! emoticon
I'm currently on Copaxone. Used to be on Betaseron. I have no experience with Techfidera. But, we have several members who have tried it. They posted about it here: www.sparkpeople.com/myspark/team_mes
sa
geboard_thread.asp?board=0x1904x5281R>8523
. It is also known as B-12.

~ Faith

~ Faith
Leader: Doing It With Multiple Sclerosis;
Plateau Busters!!!!;

2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months;have gained.
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
180
162.5
145
127.5
110
HANNAHSGRAMMIE's Photo HANNAHSGRAMMIE SparkPoints: (84,640)
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7/10/13 11:54 A

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Avonex and rebif quit working for me. Allergic to copaxone. I'm on tysabri but it sounds like my symptoms are worse. They told me tysabri was sort if a last resort but that was before the pill came out. I don't know abt it but I DO know abt tiredness. I'm amazed that people who should understand like your husband doesn't understand at times. Does heat bother you? I'm 55. In my late 40s I'd have a hot flash and then an episode. Not fun! Yes it's wonderful to have people who understand MS. I was diagnosed in 1998.

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.


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PROPMAN1 Posts: 4,486
7/10/13 10:15 A

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Mornig AllI was diagnosed with Relapsing-Remitting MS in 2000-2001. Have only been on 2 meds - Cpaxone and Avonex. Is anyone currently using the new one Tecfedera? Have begun noticing that after an Avonex shot my red spot last for days and days. Will be seeing my doc in early September so i hope to ask him about this pill (tecfedera). Luckily my relapses are such that I don't even notice them...my doc sees the changes on my infrequent MRI's. It's nice to have someone who can understand that when I'm tired...I AM TIRED. Most people just think that last night must have been a 'late' night or more coffee is needed.

Enough complaining. Wish all a good day and upbeat lives. emoticon

Never Give Up! Never Surrender!


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7/10/13 12:54 A

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Sloan --

So sorry that I missed your introduction. My Spark posts were going to my Spam folder, instead of my Inbox for awhile, and I missed a bunch.

Welcome, and, I hope my belated post won't discourage you.

~ Faith

~ Faith
Leader: Doing It With Multiple Sclerosis;
Plateau Busters!!!!;

2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months;have gained.
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
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SLOANEART SparkPoints: (4,728)
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6/18/13 9:56 P

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As an old man, so I don't fit the typical Sparkpeople user profile and am not likely to be much of a bloggerr. I have been reading and learning from others.
Had MS for years before having a big exacerbation in 2003, when I was diagnosed. At the same dime I developed a condition known as Meige Syndrome with causes muscle spasms in the face and neck. Had to retire early and took up munching as a hobby, adding about 20 pounds to an already abundant belly.. Last year, I became diabetic and FINALLY made positive life changes. So far, lost 35 pounds with a goal of losing 5 more. Seems to be easier to get around and I feel less prone to fall.
I've read many of the post here and they do inspire and motivate me. Thank you for that!



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6/13/13 8:33 P

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I have been using SparkPeople for about 3 weeks. I was so excited when I discovered this forum. It will be great to "talk" with people who actually understand! I was diagnosed in May, 1998, at age 40. I used Avonex and Rebif for years (except I was injecting every 5 days instead of 7). I'm allergic to Copaxone. I've been on Tysabri monthly infusions since February, 2009. My regular neurologist didn't know what else to do, and I was going down hill fast. Anyway, he sent me to a MS Center in Charlotte, NC. It was great. It took a while, but I can't believe how much better I'm doing now. I live in Louisiana now, and it was no problem to change doctors. The Tysabri company worked with me so much. I would love to learn from this forum and answer any questions you might have.

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.


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5/13/13 1:11 P

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Welcome, Lesli!

Not only do we "get" (understand) the fatigue issue; we also "get" other people NOT understanding.

Ignoring fatigue and trying to push through it, in fact, can put stress on your body and could contribute to triggering an MS flare.

We have an interest in common, Lisa. I'm also interested in early childhood. For about 4 years, after getting a one-year certificate in Early Childhood Development, but, prior to getting my social work degree, I worked in child care centers. In social work, I continued to work with early childhood issues (but, I worked with the adults, such as parents, and child care providers).

Now that I am on SSDI (disability), I've been blessed to be able to volunteer 2 mornings per week as a preschool teacher, and I LOVE being back with the kiddos, instead of the adults.

Keep coming back, Lisa! Let us know how we can support you.

~ Faith

~ Faith
Leader: Doing It With Multiple Sclerosis;
Plateau Busters!!!!;

2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months;have gained.
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
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127.5
110
ELISARA2005's Photo ELISARA2005 Posts: 159
5/12/13 10:12 P

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Hello Folks,
My name is Lesli. I was diagnosed with relapsing remitting MS Feb. 2005. I was 22 at the time. Since then, I've had a son, who is 4 now, and am a single mom. I'm also going back to school to become a preschool teacher. I am 3 years relapse free, though I do have flare ups in the summer and at finals time :). I was very relieved to see that there was a MS group. It's really hard for me sometimes to get people to understand fatigue isn't just something that can be "worked through" or "ignored". I am very glad to be able to join and talk with people who know what it's like.

I hope to get to know you folks.
Lesli

Why do we try so hard to be like everyone else, when we were born to be unique?


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5/7/13 12:53 P

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Hi UMM:

Welcome to our SparkTeam.

Everyone's progression is different. I applaud you for taking the bull by the horns by being concerned about weight issues. I believe that anything we can do to positively impact our general health can also have a positive impact on our MS.

Although, many years ago, before MS meds, the prediction used to be that, within 10 years, 50% of people with MS would progress to SPMS (secondary progressive), now, my MS specialist says that some people never get there.

Just take care of your health. I'd recommend getting on a DMD (disease modifying med) if you are not currently on one. Statistics indicate that they reduce the frequency and severity of flares, and delay progression.

Best wishes. Come back often! Feel free to check out my SparkPage to learn more about me. :-)

~ Faith

~ Faith
Leader: Doing It With Multiple Sclerosis;
Plateau Busters!!!!;

2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months;have gained.
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
180
162.5
145
127.5
110
UMMABDULKHAALIQ SparkPoints: (0)
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5/7/13 9:43 A

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Hello everybody,

I was recently diagnosis with MS on 03/28/2013. Im here to hear people stories and see how everyone is progressing. This is a scary situation for me, Im afraid that one day I may become completely disabled and unable to be a mother to my son. Just looking for some support words or encouragment and things I can do to help ward off the progression as long and as much as possible. emoticon

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3/28/13 7:39 P

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all of that is true. as a coworker said all I can do is try. try and bring him home and hope for the best.

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3/28/13 6:23 P

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Best wishes, Danielle, with helping your family to make plans. It sounds like you are, somewhat, caught between a rock and a hard place. Either you choose to do what would feel the most safe for your dad's safety (nursing home) and can have piece of mind but everyone is mad at you; or, you leave him at home, and worry about his health and safety and basic care even (such as toileting), but, then, you worry.

However, if your dad really wants to stay at home, I do believe, as much as possible, in "self-determination", and people (like your dad) being allowed to make their own decisions. So, I hope that adequate home services can be set up (maybe your husband IS a good idea?) to help with that. I hope that the social worker is effective at her (or his) job, and can point you in the right direction so that, together, you can make decisions that will both 1) allow your dad to remain as independent as possible, and 2) provide for adequate care and safety.

~ Faith

~ Faith
Leader: Doing It With Multiple Sclerosis;
Plateau Busters!!!!;

2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months;have gained.
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
180
162.5
145
127.5
110
DGIRL785 SparkPoints: (0)
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3/28/13 5:04 P

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Thank you for your response. This has been the hardest thing ever(besides loosing my mom). Especially because i was in the right mind set that he needed to stay in the nursing home and was overruled. then my sister kept telling him everything i was saying how its going to be hard for him at home and then he just got mad at me. he told me hes done it for all this time alone and he will be fine. when he was falling atleast once a week at home. and this fall he needed 3 staples in the back of his head bc he hit it on the toilet. my sister doesnt understand, she told me she was going to get him a cell phone for when shes not there. i just about lost it on her, im like what happens when he needs to go to the bathroom? he needs full assistance getting in and out of the wheel chair and going to the bathroom. the home has him in depends. then my sister told me my dad was mad bc i was visiting him and they were changing him and i didnt leave the room. im like who does he think is going to change him? a social worker is helping us. right now my sister gets paid thru the state to care for him and he had another lady that came and cooked a meal, i think we are going to switch her to my husband tho bc he stays at home with our 2 sons (ages 1 and 5) and only has school 2 times a week. so he can be there. my marriage isnt exactly sturdy tho. im sorry im venting. im just really scared. he does have medicare and medicaid. we reside in IL.

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3/28/13 4:52 P

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Danielle --

Welcome to our team.

Worrying about whether your dad will be able to care for himself during the times he is alone sounds stressful. I encourage you to talk with the social worker in the nursing home where he currently is. Social workers are trained to help connect people with the resources they need; hopefully someone can help to point you to more resources. If the nursing home believes that he needs 24 hour care, but there are many hours each day when he will be alone, it sounds like perhaps some at-home help needs to be arranged. A social worker could also help to explain how to manage the insurance hurdles that might accompany that.

~ Faith

~ Faith
Leader: Doing It With Multiple Sclerosis;
Plateau Busters!!!!;

2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months;have gained.
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
180
162.5
145
127.5
110
DGIRL785 SparkPoints: (0)
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3/28/13 4:11 P

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I my name is Danielle. My dad has had MS for 30years and is 60 yrs old. In dec. he took a fall at home that landed him in the hospital and from the hospital he was in a nursing home for rehab. the nursing home told us that at this point he needs 24hr care, because it was just my sister and i stopping in and checking on him. my mom passed 4 1/2 yrs ago from cancer, so he lived alone. so i did all this work and looked into nursing homes when now he tells my sister and i that he just wants to go home. so she agreed to move in with him and basically told him he could go home. even tho she works and wont be there all the time. so he goes home sunday and im very nervous about it. i work 9-5 job so i cant be around much.

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3/17/13 3:20 P

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Please say hi here. Or, feel free to begin your own thread.

~ Faith

~ Faith
Leader: Doing It With Multiple Sclerosis;
Plateau Busters!!!!;

2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months;have gained.
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
180
162.5
145
127.5
110
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