Circle of Moms....Moms with MS!!!!!

Tracy - posted on 02/27/2012 ( 9 moms have responded )

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Hello Fellow Group Members....



I set this page up several years ago now. Once FB made it harder to log onto Circle of Moms, I found myself not paying much attention to it. I logged on to our Moms with MS page and see not much action. I imagine we all have felt the same way....out of sight, out of mind. Also, if you post a question or comment, no one has been there to respond.



This is a notice to see if we can rekindle some conversation...



I find that I have had new challenges facing me. In fact, my MS specialist has recommended a change in my medication to Gilenya or Tysabri. I started down the Gilenya path, only to change my mind last second and switch to Tysabri. It would be wonderful to hear from the members that have had any experiences with either of these treatments.



Other than that, It's my son's 7th birthday and my daughter is on the doorstep of pre-teen status!!!! I'm still working full time and running them around to their after school interest. It's exhausting... I find fatigue is still my number one daily problem.



Would love to have you all check into our community and let us know how you are doing!



Thanks in advance for your rekindled interest :)

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9 Comments

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Kristin - posted on 06/03/2013

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I hope you feel better now! There's also http://www.MomsWithMS.com which has an affiliated facebook group too... it's private to Moms diagnosed with MS (and a couple of moms to be/trying to get pregnant).

I apologize for being so late to share!!

Lidiya - posted on 12/08/2012

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Hi moms i just came across this group and wish i have found you much earlier. I am a 27 year old mother of a 4.5 year old and have been diagnosed with MS since i was 15. I had symptoms since i was 10 well at least every spring but not bad. I was told by am eye doctor at the time that it looks like all i wanted were glasses. I have been on Avanex since i was 15 till not. My nuro recommended Gilenya and we are in the stage to see if they will approve the coverage. If you moms are still on here i would really appreciate some help. I dont know if any of you have experienced it or not, but i seem to have a very short temper. I get irritable very easily and upset ( take things very close to heart). I am a Libra lol, but since i was a kid some things i really took personally. Any advise, suggestions would be greatly appreciated.

Lisa - posted on 07/11/2012

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Is anyone using this page anymore? It does seem as though the interest dwindled after FB stopped "interacting" with it. It too bad because this could be a very useful place for us to share info and life stuff!

Amy - posted on 03/03/2012

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Yes!

I am currently on Tysabri as my Neuro was seeing a decline on Copaxone and I was having increased issues. I won't deny that the risks made me nervous at first, but I am living a fairly active and normal life and prefer the convenience of a once a month infusion over do-it-yourself injections. I am coming up on a year and am going in for an MRI and blood test for JC Virus in a couple weeks.

I tend to be a little tired and "off" for a day or two after my infusions, but overall, I am symptom free.

Hope that helps!

Amy

Kiara - posted on 02/28/2012

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I have considered Gilenya, but not Tysabri. I am on Rebif right now. My biggest problem is fatigue as well along with painful spasticity that sometimes stops me from doing the things I like. I'm on a handful of symptom management prescriptions. I wish I could find that one medication that makes me feel better on a more regular basis. I am going to try out a different neurologist to see if they have anything different to say or suggest.



I don't find a lot of MS patients that are still working full-time. So am I. I am a single mom of a 9 year old and I try to keep her active. Her afterschool care is a life saver because they offer a lot of activities such as piano and karate lessons. This helps a lot with the driving around.



Biggest thing I've learned is to pace myself and listen to my body. As my boyfriend says, if I don't take care of myself who is going to take care of my daughter?

Christy - posted on 02/27/2012

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Tracy, I was on Avenox for 5 years. At my yearly visit with my Neuro lat November, he gave me the option of going on Gilenya. I jumped at the chance to take a pill instead of a shot. It took a few months to get the drug company, insurance etc set up. By January I was finally on it. Two weeks after I started, the doctors office called to say I had to stop taking it. When I asked why, I was told that 7 people have died on it. I have not been able to get any more information on the drug. And it seems that plenty of people are still on it. I'm still waiting for my MD to call me to find out what I do next. It's been almost 4 weeks since I've taken anything. I don't have a problem with it, but my husband is freaking out. If I find out any more on the drug, I'll post it.

Angela - posted on 02/27/2012

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Hello!

I have to admit I too have been out of touch with this site for quite a while for many reasons.

I am on disability with a now K and 2nd grader! I volunteer at school at least once a week. I was a teacher, so most of the staff really likes having me around!

I just switched from Copaxone injections to Gilenya (pill) this past Wednesday after finally getting through all of the red tape! I definitely like pill vs injections after 7 yrs! I have had very few side affects so far. I feel my heart flutter once in a while and have noticed I seem to feel warmer than usual, but I am pre-menapausal, so this may be kicking it into high gear??? Who knows!

My boys are more understanding than my hubby about my MS, but, my hubby also has to take on more than the boys because of it. So, that's more than a little about me!

I also want to let all of you know there is a wonderful open chat at MSWorld.org which is connected to the MS Society and they have a Moms chat @ 8:00 EST the first Thurs. of the month. It is a great place for information, to vent, and even for good, clean fun!!! I recommend you check it out!

Angela aka musicang

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