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Young Adults and MS For those between the ages of 18 to 30 coping with the challenges of MS.

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  #1  
Old 04-29-2011, 01:34 PM
kerrymcgowan kerrymcgowan is offline
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Join Date: Apr 2011
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MS is ruining my life :(

I have had ms for nearly 4 years and has been a struggle since day one with the fatigue, numbness and weakness im only 24 and a single parent of a lil girl who is 4 years. Ive been put on steds again to stop me going blind in one eye i still have blurred vision and keeping my fingers crossed it dont get worse Im so strong on the outside but its killing me on the inside i dont think i can keep the strong act up no more i have no fight left in me xxx
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  #2  
Old 04-29-2011, 04:16 PM
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jojo18 jojo18 is offline
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Join Date: Jul 2008
Location: Western NY
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first off, are you on any meds for fatigue? or MS? i take nuvigil for fatigue and it does wonders. i wouldnt want to give it up. (20 year old in college[double major] dxd at 13)

im sorry that ur going threw so much. is there any help with ur girl? family? friends? daycare?

i would contact your local MS society for help.

don't give up. you have a four year old counting on you.
i know that MS sucks, but the doesn't have to mean that life has to suck with it.

you can fall down 100 times. just make sure you get up 101
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  #3  
Old 04-29-2011, 05:32 PM
kerrymcgowan kerrymcgowan is offline
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Thanks for the reply i have been on copoxone injections which i know longer take due to it got very uncomfortable, i have meds for depression and fatigue i was told the copoxone would help lift it :/ The numbness and weakness ive learnt to live with and exspect from time to time but this optic neurtis has scared me i depend so much on my eye sight to care for my lil girl who is my rock shes the reason why i stay strong. I have my parents but as my symptoms are invisible its hard for them to understand what im going threw they are hard to try to talk to as i think they might be partly in denial or just dont know what to do for the best. I currently see someone at a neurological hospital but every 6 months its very far to get to aswel. We are trapped i see it as and even my friends cant seem to understand when im tired i get as a reply... i know ive not stopped and tired to, or a night out is what u need i try to explain but i feel they just dont undertand as they say stuff like stop being a bum or bore. Im sorry to be so down its just the way i feel right now and i just need to get it of my chest and tlk to ppl that can understand what im saying xxx You seem to be managing well my hat goes off to you and hope all the best for you to xxx
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  #4  
Old 05-04-2011, 01:09 PM
publisher publisher is offline
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Be Happy!

Hi Kerry,

I was just dx (almost) 2 months ago and my first syptom was ON so I know how you feel. I have been terrified since then that it will happen again and that there will be permanent damage. I still would say I only have 80% of my vision back in my left eye and it tends to be much worse with bright lights. Just know there are people here that will listen and try to communicate back. Have you been active with your MS chapter? Maybe you can find friends there who are also just as tired Hang in there try to be positive because that has such a big impact on how you feel!
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  #5  
Old 05-05-2011, 08:49 PM
cavsfan10 cavsfan10 is offline
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Join Date: Aug 2010
Posts: 9
Angry I am in the same boat

I am 21 and was dx a year ago this aug. I hate that i cant go a day with out being reminded i have ms. im on copaxon so i have to inject daily and i also have a starp burning stabing pain in my legs all day every day since feb. my other symptoms are losing use of my arms or legs from time to time. none of my friends seem to understand because they cant see the problem. i joined a new ccsvi study and qualified for stage one but idk what ill do if i dont have the blockages and that surgery is not a cure because without hope of some kind im gonna go crazy.
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  #6  
Old 05-06-2011, 07:24 AM
heliotrope heliotrope is offline
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I don't know if this helps anyone, but I finally discovered (from making my family explain WHY they were making those comments) that somehow they think pushing us out will help. They don't mean to be cruel; they just truly don't understand and don't want us to wallow.
I don't have good answers. I wish I did. The only thing that has worked for me is explaining why those comments don't help.
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  #7  
Old 05-07-2011, 05:15 AM
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jojo18 jojo18 is offline
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kerrymcgowan- i would suggest staying on copax, or call ur neuro and talk to see about a new med. i would hate it if u progress and have permanent damage

cansfan10- maybe having a "party or conference" with ur friends to explain ms to them. i have explained MS and my limits to my friends (didnt do it all at once though, or to all)
this is a confusing disease, ur friends are either confused or dont understand what it is.
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  #8  
Old 06-10-2011, 08:50 PM
ritzbitz ritzbitz is offline
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Cool Future Silver Medalist :-)

I am 31, just shy of the 30 cutoff, but am in between groups of people. I had a traumatic brain and spinal injury at age five. We thought it accounted for some symptoms. They were on and off through adolescence. They really kicked in in my twenties and stopped me in my tracks when I was 23. I was on bedrest following a small back injury, but most of it was really a triggered attack. My husband is 10 years older and we were dating at the point it kicked in. I used to be able to work, party with him, get little sleep, do activities: hiking, dog-walking, parties with friends. All of a sudden, I couldn't. He still can. It took him years to adjust to the change and he had to make a decision if me, in any form, knowing it was progressing, was worth giving up his very social and active lifestyle. He changed to be a loving husband, doting father to our four dogs, and our friends changed. We now have just a few close ones. Ones that took a while to understand that our ability to attend social events is a treasure, not something to be expected. I was diagnosed with MS, then undiagnosed. I have some crappy docs here. I have all the symptoms, but they can also be explained by the head trauma leading to spinal degeneration, migraines, chronic pain, chronic fatigue syndrome, eye sight diminishing, clumsiness, clotting disorders, etc etc etc and the great medical lie: fibromyalgia.

I have been working on dealing with pain, symptoms, NOT diagnosis for the last two years. Now, I am back onto diagnosis because it could lead to better treatments as the symptoms progress and the treatments are being limited by my health provider. A more specific diagnoses would open up treatments. Right now, I undergo rhizotomies to burn the nerves in my neck that lead to my face and cause headaches. I ignore clumsiness. The insomnia (flare ups either boost insomnia or are 24 hrs of sleeping) is treated with muscle relaxers and antidepressants. I am working. This is huge! Just now not too scared to go to eye doctor to get the bad news of how bad they have gotten. Going to the neuro dept at Univ of Penn.

It took years to get my life to be okay. We decided not to have children due to my inability to care for myself and its progression.

Are any of you experiencing chronic pain? I am going to ask the older group to see if it related at all.

I know you all have a lot on your plate. Be honest with people. Those who cannot understand and guilt you into going out or make you feel bad for not being able to are not true friends that can deal with this disease. There are some out there!!!!! Believe me. You may need to go older. My friends now are all ones that are married and understand. I manage my husband's baseball team. They understand our limitations and have become a HUGE support team. Literally. Go older and it is easier if your friends let you down. You will find those who want to help you. Keep your spirits up. For each person that doesn't get it, there are a 100 that are waiting to help you. I had a migraine now for 8 days. Couldn't see, in horrible pain, fetal position, pain, exhaustion. Went to ER, temp relief. Tried to schedule another Rhizotomy, insurance won't cover for two more months. My pain specialists, all people in the office gathered and fought to find another way to give me relief. I am still in a lot of pain, but migraine gone. People care. Ask for help. Fight for yourself. Keep yourself healthy. If you smoke or drink AT ALL, stop TODAY. You need to be as healthy as possible to fight this. I am not 100 percent I have what you do. I do know I have been through and are going through very similar things and know it gets worse, but gets better. Get yourself a chocolate lab, name it Cooper, and train it to pick up all your stuff, turn on lights. Mine knows the words remote, shoes, sandals, mouse, phone, lights, water, groceries (carries bags in from car). Lifesaver. Never trained. Picked up that his mommy needed help!

I had a 4.0 when I graduated college. Ready to go to Law School. I now cannot remember anything that happened more than 5 years ago and I work for a grocery store, but I consider working at all a great accomplishment. Do not dwell on what could have been or might be. Push for what you need and be proud of what you are doing. Every day is a gift, everything you do makes someone proud.
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