Hi -
47 male dx in July - probably had a couple of hints years before but nothing compelling until 09. Thought I was old, fat, tired - some of that too I'm sure.
Working - hopefully - teaching college. 20 years in - we shall see.
Had MRI and LP - along with all the other stuff - came back pretty quick. My gender and age are a worry - but certainly there are many worried people out there.
Started Rebif 5 weeks ago - no site problem so far - nothing extreme with side effects so far. Trying to get my head wrapped around this - and probably irritated my condition upon DX. I am sure many are similarly challenged by the emotion, fear etc.
I feel much worse than I function right now - zero to six meds in three months is a lot to adjust to. Never realized the fatigue factor - sure do now! Would like to hear from anybody - I live alone - nice cat! Been researching TOO MUCH sometimes. Need any advice you can offer - especially about how to deal with the first months.
Best to you -
tubajim
New - freaked out - but trying
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MS_HOPE
- Family Elder
- Posts: 133
- Joined: Fri Jun 11, 2010 2:00 pm
- Location: North Carolina, USA
- Contact:
Hi tubajim,
Welcome to the TIMS forum, which has much excellent info and leads (along with a little craziness at times). Over time you'll learn whom you can rely upon for good advice.
May I suggest you go to the topic "was just told I've had MS for 4 to 5 years in June this yr" posted in the CCSVI forum by james32. This link should take you there: www.thisisms.com/ftopict-13459-.html
There’s some good advice, from good people, posted in response to james’s question.
I’m afraid I can’t help regarding the Rebif and meds, since I went the natural route instead. Explore the site and/or post some specific questions you have, and I hope you’ll get some helpful responses.
Best of luck to you.
Welcome to the TIMS forum, which has much excellent info and leads (along with a little craziness at times). Over time you'll learn whom you can rely upon for good advice.
May I suggest you go to the topic "was just told I've had MS for 4 to 5 years in June this yr" posted in the CCSVI forum by james32. This link should take you there: www.thisisms.com/ftopict-13459-.html
There’s some good advice, from good people, posted in response to james’s question.
I’m afraid I can’t help regarding the Rebif and meds, since I went the natural route instead. Explore the site and/or post some specific questions you have, and I hope you’ll get some helpful responses.
Best of luck to you.
CCSVI: Making Sense of MS
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elyse_peace
- Family Elder
- Posts: 173
- Joined: Thu Dec 31, 2009 3:00 pm
- Location: Putnam, NY
- Contact:
tubajim -
welcome to the weird weird world of living with ms.
it sucks, but the people here are so nice and as helpful as they can be. darn compassionate, too. it's great to tell your troubles to folks who actually understand what you're talking about.
sorry you feel bad, but i'm glad you're still working and are kept company by your cat (i miss my kitty).
that you are ill is difficult info to process. good luck with the journey you are beginning.
elyse
welcome to the weird weird world of living with ms.
it sucks, but the people here are so nice and as helpful as they can be. darn compassionate, too. it's great to tell your troubles to folks who actually understand what you're talking about.sorry you feel bad, but i'm glad you're still working and are kept company by your cat (i miss my kitty).
that you are ill is difficult info to process. good luck with the journey you are beginning.
elyse
hey tubajim,
i am newly diagnosed myself, so i don't have loads of wisdom to impart. i've found comfort in knowing i'm not alone, as weird and crazy as this disease is. i was dx last month and its so strange to think that in june, i barely knew what MS was. so much happens so quickly - it's a lot to take in.
one thing i'd tell you, is to stay away from too much internet research. i've found this site to be very helpful as well as the national ms society website. a friend pointed out that the people who have the worst experiences are usually the one who post blogs - people with best-case scenarios are out living their life! i'm sure there are some good, positive things being published but i found a lot of negativity that just got me down. your doctor can give you the cold hard facts you need.
although MS is making you feel like crap right now, try to dedicate whatever energy you have to staying mobile and working to improve your condition - whether it is your physical condition through exercise, or your mental condition by doing something you love. Maybe even teach yourself a new hobby, or take a class - there are free college classes for adults in my city. I got an excellent book called "Stretching" (so original!) that was recommended to me as an great book for MS and mobility. I love it.
i feel like a cheerleader, but the thing that is getting me through this is positivity. Sometimes it is so so so hard to remember things will get better and life will return to normal, but if I let my fear take over, MS has already won. F*** that. Excuse my language. I keep a journal by my bed where I write 3 positive things each day. They range from "my husband is amazing" to "one of my eyes is NOT affected by optic neuritis"...maybe something like that will help get you through these tough months.
best wishes and see ya 'round the boards
i am newly diagnosed myself, so i don't have loads of wisdom to impart. i've found comfort in knowing i'm not alone, as weird and crazy as this disease is. i was dx last month and its so strange to think that in june, i barely knew what MS was. so much happens so quickly - it's a lot to take in.
one thing i'd tell you, is to stay away from too much internet research. i've found this site to be very helpful as well as the national ms society website. a friend pointed out that the people who have the worst experiences are usually the one who post blogs - people with best-case scenarios are out living their life! i'm sure there are some good, positive things being published but i found a lot of negativity that just got me down. your doctor can give you the cold hard facts you need.
although MS is making you feel like crap right now, try to dedicate whatever energy you have to staying mobile and working to improve your condition - whether it is your physical condition through exercise, or your mental condition by doing something you love. Maybe even teach yourself a new hobby, or take a class - there are free college classes for adults in my city. I got an excellent book called "Stretching" (so original!) that was recommended to me as an great book for MS and mobility. I love it.
i feel like a cheerleader, but the thing that is getting me through this is positivity. Sometimes it is so so so hard to remember things will get better and life will return to normal, but if I let my fear take over, MS has already won. F*** that. Excuse my language. I keep a journal by my bed where I write 3 positive things each day. They range from "my husband is amazing" to "one of my eyes is NOT affected by optic neuritis"...maybe something like that will help get you through these tough months.
best wishes and see ya 'round the boards
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keepbattling
- Newbie
- Posts: 5
- Joined: Wed Oct 20, 2010 2:00 pm
- Location: Gilbert, AZ
- Contact:
Don't be too scared
hey tubajim:
first off I am sorry to hear you were diagnosed. I was diagnosed 11 years ago.. and with a few hiccups I think I'm doing pretty good. When I was diagnosed I was engaged and 31 years old and I told my fiancee that at least I have Jerry Lewis is on my side and does a telethon every year (that's how little I knew about the disease). Like you, the internet can be a plus and a minus - doing too much research sometimes. I went from going to the doctor once or twice a year to going every month, self injecting myself and hooking myself up to IV's. I gained 150 lbs from not doing anything and I think eating to try and hide and pain and shame of "having a Lifelong disease". I never spoke of it and really didn't let me now wife in on any of it. I recall some disagreements and she would ask what is wrong with me and I would say" you have no idea whats its like to know that you will probably wind up in wheelchair"... I have to say that was Many Many years ago. As the time passed and found out that if I did the therapies and continued to live my life to the fullest that I would probably stay this way till age gets me. The one nice thing about the MS therapies that are out is that, if taken, will keep you in the same condition you are at now. I unfortunately, had alot of side effects from rebif and avonex. I had a hard time taking them b/c they made me so sick. I was able to get in the Touch program and use Tysabri. It has been wonderful for me. Its a once a month iv infusion. I worked for 10 years after the dx but do to a high stress job and the inability to work a 40 hour week I went on disability. My original thought was I will spend as much time with my kids while up and mobile that I could. Even my wife agreed once I stopped working and removed the stress from my life I felt much better. 2 weeks ago I had a baclofen pump implanted to aid in my MS spacisity. I have been dealing with non stop neurological pain on my left side but have been able to medicate it to a tolerable level. It may sound like I've been through hell but honestly it hasn't been that bad. I don't know if I thought the worst and was relieved when it didn't happen or I have just gotten numb to it. All I can say is welcome to the community. if I had this when I was diagnosed it wold have made a big difference. You will have to educate people on the disease, and you will deal with alot of ignorance. I had a boss who let me go 3 days after finding out I had it .The only thing he said when he let me go was "I hope you feel better one day" Keep your chin up, take your therapies and you will be ok. Use the forum to ask questions for the things that you dont' understand- You're going to be ok.. Keep smiling and keep battling
- Rod
first off I am sorry to hear you were diagnosed. I was diagnosed 11 years ago.. and with a few hiccups I think I'm doing pretty good. When I was diagnosed I was engaged and 31 years old and I told my fiancee that at least I have Jerry Lewis is on my side and does a telethon every year (that's how little I knew about the disease). Like you, the internet can be a plus and a minus - doing too much research sometimes. I went from going to the doctor once or twice a year to going every month, self injecting myself and hooking myself up to IV's. I gained 150 lbs from not doing anything and I think eating to try and hide and pain and shame of "having a Lifelong disease". I never spoke of it and really didn't let me now wife in on any of it. I recall some disagreements and she would ask what is wrong with me and I would say" you have no idea whats its like to know that you will probably wind up in wheelchair"... I have to say that was Many Many years ago. As the time passed and found out that if I did the therapies and continued to live my life to the fullest that I would probably stay this way till age gets me. The one nice thing about the MS therapies that are out is that, if taken, will keep you in the same condition you are at now. I unfortunately, had alot of side effects from rebif and avonex. I had a hard time taking them b/c they made me so sick. I was able to get in the Touch program and use Tysabri. It has been wonderful for me. Its a once a month iv infusion. I worked for 10 years after the dx but do to a high stress job and the inability to work a 40 hour week I went on disability. My original thought was I will spend as much time with my kids while up and mobile that I could. Even my wife agreed once I stopped working and removed the stress from my life I felt much better. 2 weeks ago I had a baclofen pump implanted to aid in my MS spacisity. I have been dealing with non stop neurological pain on my left side but have been able to medicate it to a tolerable level. It may sound like I've been through hell but honestly it hasn't been that bad. I don't know if I thought the worst and was relieved when it didn't happen or I have just gotten numb to it. All I can say is welcome to the community. if I had this when I was diagnosed it wold have made a big difference. You will have to educate people on the disease, and you will deal with alot of ignorance. I had a boss who let me go 3 days after finding out I had it .The only thing he said when he let me go was "I hope you feel better one day" Keep your chin up, take your therapies and you will be ok. Use the forum to ask questions for the things that you dont' understand- You're going to be ok.. Keep smiling and keep battling
- Rod