Any Moms living with MS?

Jennifer - posted on 01/21/2009 ( 20 moms have responded )

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My name is Jenn and I am the proud mother of a 2 and 1/2 month old baby boy named Jack. I have been living with Multiple Sclerosis for a little over 4 years now. Everyday is a battle but luckily I have a wonderful husband, family, and friends who support me.

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Paulette - posted on 02/02/2009

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I have not "officially" been diagnosed with MS but it seems to be heading that way.  I am the mom of 3 great kids. My family doctor is convinced I have MS and my neurologist is running all kinds of tests.  I have lesions but not in the "right" spots.  I have them in the optical area of my brain.  Does anyone have any info on this????  Does anyone suffer from a lot of headaches or facial pain? The pain sucks but I think the weakness and Fatigue is the worst.  My kids are 5, 7, and 11.  I hate saying no to them just because I can't pull myself off the couch.  It's not fair to them.

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Christa - posted on 05/31/2012

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Hi Tara! I know that you posted this some time ago, but I am a mother of three children ages 17, 7, & 4. My 7 yr. old has epilepsy and Asperger's. I have not been diagnosed with ms, but am currently being tossed from dr. to dr. to rule it out. I do have some brain lesions, but the orthopedic dr. kind of blew it off (at first thought it was herniated discs, pinched nerves, etc.) I have terrible leg, arm, back, and neck pain or pins and needles (hands and feet fall asleep often for no reason). Other days, I have such muscle weakness in my legs that I can barely walk. I am not a hypochondriac and am very active, not at all sedentary. This is so frustrating! Does any of this sound familiar? May not be ms, but this is definitely not normal.

ANNMARIE - posted on 11/27/2010

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THAT IS HORRIBLE! I DONT CARE WHAT YOU HAVE GONE THROUGH, FOR THOSE BOYS TO INSUATE THAT THE VERY WOMAN WHO GAVE BIRTH TO THEM END HER LIFE BECAUSE THEY DONT WANT TO BE SEEN WITH A LOSER IS SOMETHING I CANNOT FATHOM. THEY NEED TO SIT DOWN AND READ ABOUT ALL THAT YOU DO GO THROUGH AND HOW HARD IT IS TO FUNCTION BUT WE DO SO FOR OUR CHILDREN.
NEVER FEEL YOU DONT HAVE SUPPORT.IF THAT MEANS YOU HAVE TO SIT ONLINE ALL DAY AND TALK TO PEOPLE IN THE SAME SITUATION THEN SO BE IT.
THERE IS A GREAT SITE I BELONG TO CALLED PATIENTS LIKE ME, IT IS SO INFORMATIVE AND LOTS OF SUPPORT.
LET THOSE BOYS KNOW MY HUSBAND LOST HIS MOTHER AT THE AGE OF 35 AND FIVE YEARS LATER HE WOULD GIVE ANYTHING TO TALK TO HER ONE MORE TIME.
LET THEM HAVE TO DO EVERYTING FOR THEMSELVES AND SEE WHAT THEY THINK THEN!

ANNMARIE - posted on 11/27/2010

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After 2 years of seeing a Dr who should be disbarred, a complete hysterectomy and no one listening to me, I finally was recommended to a new Dr who got the ball rolling the first day I saw him. The first day I saw him he took me off of five of the six medications my former dr had me on. Ihave a kidney disease so need to be careful with meds that will process through the kidneys, and a history of breast cancer. (Actually, I would need the whole page to list our history.lol)

I began experiencing symptoms of a Chiari which is a condition where the brain drop down on the spinal cord. I had excruciating pain in my neck that settled in my biceps and I could and still cannot explain how the pain felt. Then while at work one day, I am a hairstylist so lots of standing and working with my hands, while in the middle of cutting hair my fingers went numb. When I told my Dr he sent me to a Neuro Surgeon because he had gotten all my test results back. According to the Radiology Dept I did not have any signs of a chiari but had a "matter" on the left side of my brain. I waited three long agonizing weeks to see the Neurologist. He showed me my films and pointed out my chiari, 2 herniated discs, and a lesion on the left side of my brain. I was in shock I think as he said "With a lesion we usually look for two things, MS or cancer. You don't have any history of MS in your family" I was given muscle relaxers to add to all the other meds I take, and told we had to wait three months to re test the lesion as it could not be biopsied. Also they would check to see if the chiari was interferring with the spinal fluid flow and then make a decision about that. He stated that as far as my herniated discs he could operate tomorrow. I was in a state of disbelief and thankfully have a sister who is an RN and two months shy of being a NP, so she took over the conversation and treatment options. He stated that perhaps I had fibromayalga until she stopped him and said " Listen between you and me we both know that is not a valid disease, it is when Drs give up testing and cannot figure out what is wrong with you" He agreed and I thank God for her or I am sure that would have been my diagnosis.

Although many tests and setbacks ocurred in the three months and after I was finally sent to a neurologist who has been my guardian angel. I was in fact diagnosed with MS and am learning alot about it as I go. I have a wonderful support system, and am thankful my children are not little as I cannot imagine. Although I come from a large family and together we have 13 children between me and my four sisters,the little ones are here often but it is not an every day thing. My boys are 17 and 14 and so helpful. My husband is learning and has become very supportive and helpful and my family and goup of friends are amazing.

Right now in Michigan the weather has changed drastically and is freezing. That has taken a toll on me and I spend alot of time soaking in hot baths with epsom salt, sitting on lots of pillows and a heating pad in my bed, and while my meds help they are still in the experimental stage where we are finding what works. I am taking 1200mg of neurontin, vicodin es 4-5 times a day, xanaflex 1-2 times daily, etoldolac 2 times a day and over the counter ibuprofen when absolutely needed. Due to the kidney disease I cannot take alot of anti inflammatory.

It is a battle daily but I try to be positive, rest when my body needs it, and learn everything I can. I sympathize with you so much and all the women on here who have young children.

Kimberly - posted on 02/14/2009

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Hello Jenn, I also have MS, was diagnosed last April.  I also have a circle for Mom's Living with MS, if you would like to join. and get support from other moms with similiar battles.

Paulette - posted on 02/03/2009

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I am only facing a probable MS diagnosis.  The reason I say "only" is because as bad as it is it doesn't seem that bad looking at what you've gone through.  It is in times like these you find out who your true friends are now isn't it?  I hope that someone close to you relizes how important it is to have a friend to lean on.  Is there anyone that you can reach out to that was close to you in the past?  I know you shouldn't have to seek out support but sometimes people stay away not because they don't care but because they just don't know what to do. That friend you so desperately need may just need to know it's OK to come back to you. I'm glad your family is there for you.  It sounds like they are wonderful people!  My thoughts are with you and I hope you post again.  I can be your internet friend! I truely hope today is a better day. 

Angela - posted on 02/02/2009

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It is nice to find someone elese that understands this is not just a fight I fight for myself it is for a family that is so often in crisis and always broke. I long for friends to break the hours of pain I sit alone in my coffin, the coutch.  I long for the days that I had friends.  It has been a decline no one but a dear husband and my children have stuck by me through.  The cronic depression I think comes from the constant decline on our spirits. I hope to find a few friends that understand a smile is a thing my grand daughter does.



alone Angela

Paulette - posted on 02/02/2009

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Quoting Angela:



I have been suffering with both MS an Lupus have had to battle cancer 5 times and at the moment considering ending life.  I have fought hqrd to be here for my boys whom sat me down aand told me rqther been seen with a looser they would rather me end it if I am fighting for them. I hope your fight is for the betterment I HAVE NO SUPPORT






I am not even going to pretend that I know what you're going through.  I imagine you have had many terrible days in the past.  Life is terribly unfair.  I would like you to know though that reading your post touched me a lot.  It gave me the will power to say "if this woman can still fight after all she's been through, I have no reason to complain!"  I am, if only for today, dragging my butt off the couch, ignoring how tired I am, and shaking off the constant pain that just won't leave me alone and I'm going to do something productive!  I'm going to play with my kids, I'm going to feed them "REAL" food for supper and they have you to thank for that Angela.  My thoughts are with you and I hope you have better days ahead.

Kristy - posted on 01/31/2009

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....and Angela hang in there your boys will appreciate what you do for them and for being there for them when there older. My moms mom had progressive ms and was always sick and in a wheel chair when she was growing up. She resented her mom for not being able to do all of the things with her that moms were supposed to do and she resented her for having to stay home to help her mom get around.  My grandma passed away from complications with ms when she was only 45 and my mom was 19, my mom has always regretted feeling angry at her mom and for not understanding what her mom was going through.  Now she has so much respect for her mom watching me and my sister who both have progressive ms and kids.  Because she is our mom and she can see our pain she now better understanding what her mom went through. Your kids can't possible know what your going through and the pain your going through because they've never had kids themselves, but when they do they will need you there for them.  Not only that but they instantly gain respect and love for you.  Hang in there.  As far as support I know its not much but you have us on here to vent to!



 

Angela - posted on 01/27/2009

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I have been suffering with both MS an Lupus have had to battle cancer 5 times and at the moment considering ending life.  I have fought hqrd to be here for my boys whom sat me down aand told me rqther been seen with a looser they would rather me end it if I am fighting for them. I hope your fight is for the betterment I HAVE NO SUPPORT

Kelly - posted on 01/26/2009

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Hey, ladies!  I've been dxed with RR-MS for 11 years.  I have a 9yo son and (almost) 7yo daughter.  I've been on Avonex for years since my second event after my daughter was born and I realized that it's called MULTIPLE sclerosis.  ;-)  We wanted three children and tried for a third pregnancy, but my health would plummet when I went off my meds.  I also work full-time.  Kristy, I was on Copaxone years ago and it seemed to work for me, but then the effect seemed to stop after a year of therapy.  I've been on Avonex ever since and it has worked well.  I take an Alleve with my shot, and I pop another in the morning.  My body has adjusted, it seems, to the Avonex, and my side effects are minimal.  



It's wonderful to meet all of you!

Jennifer - posted on 01/24/2009

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I was on Avonex for 4 years then after I had my baby the neuro suggested that I try Rebif so I started it 2 weeks ago.  I had a lot of ruff side effects w/the avonex so i'm hoping for a better outcome with this!

Kristy - posted on 01/24/2009

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Hi my names Kristy!  I have a 11 month old daughter.  I was diagnosed 3 months after I had my little girl.  My biggest thing is also my leg pain and the vertigo.  I'm currently on copaxone, but I havn't noticed any difference.  I'm still having flare ups about once a month if anyone has found something that helps let me now.

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Aww I am so sorry to hear that Nanette...Life is pretty insane. My mom's name is Nanette! Its a pretty name! :o)

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I have had MS for 8 years and I have a 12 year old, she is a wonderful help, she went thru cancer with me as well, so we kind of are not surprised when things go wrong.

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I'm not on any meds yet. I've just recently been diagnosed. I've been looking for a diagnosis since last February. If this is truely what I have, I've had it for about 4 years. I live in Central IL. They don't know what else could be causing the leg pain...its not joint pain or bone pain. Just weakness and pain! Do you have brain lesions?

Jennifer - posted on 01/22/2009

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Are you taking any meds???  How long have you had it?  Where do u live?  My issues are w/ my legs not pain tingling!

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I am! lol! Sorry we're both here but its really nice to talk to someone else who knows what I'm going through. My biggest thing is my leg pain. They are so weak and in such pain. I have a 17 month old who is such a good kid! He is very self entertaining which helps on days like today when I feel like I can barely move from the couch!

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