Hi, I am Aliciab523: Hi, everyone, I am... - My MSAA Community

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Hi, I am Aliciab523

aliciab523 profile image
24 Replies

Hi, everyone, I am AliciaB523. My son has multiple sclerosis. He was diagnosed in August, 2014. He takes Copaxone 3x a week and it has not many side effects, except a reaction when he takes the shots. It has kept his MS stable, thank God. His MRI's are stable and no new lesions. Yea! He does deal with fatigue, brain fog and numbness, too. He tried many medications for fatigue, provigil, nuvigil, amantidine, adderall. The only medicine that helped him so far is vyvanse for fatigue. It is extremely difficult to watch my son go through this, but I take comfort in prayer and the fact that his MS is stable right now and he is able to work. He is 28 years old. Thank you for listening and letting me introduce myself, I appreciate it. Take care. Hope everyone had a great Christmas and will have a Happy New Year.

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24 Replies
WAshingtongirl profile image
WAshingtongirl

Hello, aliciab523 . Having MS is one thing. But your child being diagnosed with it? I'm sorry. I have two grown sons and grandchildren, so I can only imagine what you have gone through. But it sounds as though your son is doing well on his current treatment. What an encouragement and answer to prayer that must be!

Please share your thoughts, fears and needs with us. I'm sure we can all help each other through information, encouragement, and varied perspectives.

Has your son visited our forum or shared any interest in doing so?

Many blessings to you, your son, and the rest of your family in the coming year. Praying for his continued stability. 💕Dawn

aliciab523 profile image
aliciab523 in reply to WAshingtongirl

Thank you so much for your kind words and encouragement, Tutu and erash. I appreciate it. Many blessings to both of you, thank you

jimeka profile image
jimeka

Hi Aliciab523, nice to meet you. You appear a very strong lady who loves her son very much. It must be hard for you to see your son going through so much at such a young age. As Fancy as said, it is good that careers come on this forum and share their experiences with ms, please keep in touch and let us know how your son does and also yourself. Blessings Jimeka 🌈 🙏

aliciab523 profile image
aliciab523 in reply to jimeka

Hi, jimeka, nice to meet you, too. Thank you so much. Yes it is very hard. Thank you I will keep in touch. Take care

erash profile image
erash

aliciab523 so glad you came on board and shared. We need more supporters (moms dads spouses bf's children...)here sharing their stories. Without the people that care in our lives this would be a much more difficult disease to fight.

WAshingtongirl profile image
WAshingtongirl in reply to erash

Amen, erash !

aliciab523 profile image
aliciab523 in reply to erash

Thank you so much for your kind words, very true, thank you take care

aliciab523 profile image
aliciab523 in reply to erash

Thank you so much for your kind words. I appreciate it. Take care

Fancy1959 profile image
Fancy1959

@Aliciab523,i would like to extend to you a warm welcome to our amazing chat room from Fancy1959. You have found a safe place to come find out information about MS and to ask questions about this dreaded monsters that your son is fighting. I am so very sorry that your son has to go through this at a time in his life when he should be out enjoying all there is in the world around him. As a mother like yourself this would be one of my worst nightmares so I can understand your concern and your fear for your son.

I would like to share with you information that this is a time where MS is changing constantly due to the numerous new therapies that are being developed yearly. Keep your faith and help your son to stay positive and strong!. The only way he's going to accomplish that is if you role model positiveness and strength in front of him. The more upbeat and relaxed and confident you are that he's going to find a way to beat this the more he will mirror you. Remember right now you are his rock and his anchor and he needs to depend on you during this time of uncertainty and fear.

See if you can get him to become part of our extended family and join us in this chat room. I believe it would be good for him to interact with the positive, kind, caring, and considerate people in this chat room. We have an amazing bunch of individuals who have a wealth of acquired knowledge about MS due to the length of time they have fought this disease themselves.

I'll go ahead and send out a post asking if there are any members out there under the age of 30 who are fighting MS. Then he can understand he's not alone in this fight. My hope is that he might feel more connected and be more open about discussing MS with people his own age. I wish that you would impart one important message to your son and that is together we are stronger! I look forward to hearing from you again and hopefully hearing from your son as well. Until then, please tell him to take care of himself and you need to make sure you take care of yourself as well!

aliciab523 profile image
aliciab523 in reply to Fancy1959

Thank you so much for your kind words and encouragement. It really helps. My husband and I try very hard to support him and encourage him. My husband has type 2 diabetes and neuropathy, too. It is very difficult because my husband is on permanent disability, but we perservere. Thank you again for your kind welcome and I will tell my son about you. I will keep in touch. Take care. Happy New Year.

1RiskyRich profile image
1RiskyRich

Sorry to hear about your son. I was also diagnosed in 2014. I tried 2 meds and nothing. I eventually went abroad and had HSCT when Dr. Burt in Chicago told me I wasn't sick enough to have it done. It has made a huge difference. Heat issues, fatigue, numbness, walking, brain fog, talking issues, car driving & twitching are all gone. No MS medicine since February 2nd. I still have a little of the off balance issue especially when I get tired. He should definitely look into it. Dr. Burt's finding wont be FDA till 2022 but has already been approved in other countries. My MS didn't want to wait.

aliciab523 profile image
aliciab523 in reply to 1RiskyRich

Thank you very much. I am glad that you had the HSCT done and it has made a difference. That is amazing. I have heard about Dr. Burt and his work. That is great you are off MS medicine. I will tell my son about this valuable information. I didn't know Dr. Burt would be FDA approved until 2022. Thank you, I appreciate it.

Take care and hope everything goes well for you.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi aliciab523 we are always looking for a caregivers side of things. As it can be just as hard for you as it is for us. You son is very lucky to have such great support! 😊

I was dx'ed in Mar of '15 and also on Copaxon 3xs a wk. What kind of reaction is your son having with it? I have actually started using Neosporin after l ice, after the shot. It helps with the itching. Also you might want to check the depths of the shots. What is good for one isn't necessarily good for another. 😊 We have alot of people here on Copaxon with helpful hints 😊

Thank you for joining us!

Jes🎉💝

ps Have a Safe and Happy New Year!

aliciab523 profile image
aliciab523

Hi, jesmcd 2, thank you. Yes it is very hard for my husband myself. Thank you. My son usually has welts, itching and redness after reactions. I didn't know Neosporin could help, thank you, I will tell him, that is great information. Thank you for your kind words. Have a safe and Happy New Year, too

JeenaRae profile image
JeenaRae

Hi Alicia

I was dx at 20 yrs old and I knyhow hard it was on my parents to hear the words let alone myself. From personal experience it seems that parents can take the news harder.

I'm so glad to hear that your son is stable on his now NFL hopefully he'll be able to find that balance between stress and fatigue that will allow him to function better in his day to day.

Best wishes

Rae

aliciab523 profile image
aliciab523 in reply to JeenaRae

Thank you very much for your kind words and hope you are well, also. Take care

greaterexp profile image
greaterexp

I'm so glad you found this chat room, though we all wish there were no reasons to be here.

Having a caregiver-mom's insights will surely help us all, so thank you for sharing here.

aliciab523 profile image
aliciab523 in reply to greaterexp

Thank you so much. Take care.

jackiesj profile image
jackiesj

Your son is truly blessed to have you.I hope you take breaks and take care of yourself.You have such a wonderful attitude.I told my sister and it was a "get over it" type and I had just built up enough energy to tell...Remember to take care of yourself.You have permission feel whatever way you feel.Much caregiver help out there.You are doing the best things for your son...Love and Compassion....

aliciab523 profile image
aliciab523 in reply to jackiesj

Thank you so much for your kind words and encouragement. It really means a lot, thank you

jackiesj profile image
jackiesj

I hope this is a good day for you today.The word "good" means so many things and often it is I'm awake, ok, I'm breathing..now what do I need to do and we hit the brain thinking.It is hard to be a care giver(because that word "give" we tend to give it all away and not save some for ourselves) and it is hard to be the one cared for cause..in a perfect world, we would do it ourselves.You will find many here that understand both.It is a pleasure to have you here...thanks for sharing!

aliciab523 profile image
aliciab523 in reply to jackiesj

Thank you, I am happy to be here. It is very difficult to be a care giver. It is hard seeing my son with Multiple Sclerosis at 28 years old. I thank you for your understanding and compassion. Take care.

jackiesj profile image
jackiesj in reply to aliciab523

Does your son live with you?I imagine you are the best friend he has.Here when you need us!

aliciab523 profile image
aliciab523

Hi, Jackie, sorry I haven't been on in a long time. My son lives in Bayonne and works in New York City at the World Trade Center. I am grateful that he is still able to work, although the terrible fatigue and migraines are horrible, but he powers through them. He is now 31 years old and still on Copaxone and doing well. Thank you, everyone for your support and kind words. This is a great site.

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