Hello and welcome to "my" MS community!
Please start off by introducing yourself (such as providing your name (and/or nickname), your type of MS (or who you know who has it. Please keep in mind that if you don't have it, you need to have a CLOSE relative or a partner who does) and remember to be respectful of everyone here. All age ranges/religions/etc. will be coming here so please: be respectful and keep it clean...
p.s. Please do NOT provide medical advice here; this is a community, not a hospital.
Once again... WELCOME (and thank you very much for coming in)!
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20 comments:
Hi! :) My name is Tetsa, and I was diagnosed with Relapsing Remitting MS after being injured at work. At that time, I was diagnosed with Reflex Sympathetic Dystrophy (RSD) which I still have. My first neuro found lesions on my brain but said I did not have MS because my spinal fluid was not positive. I found a Neuro at Jefferson Hospital in Philly who acknowledged the RSD but was on the fence about MS. I became very ill and couldn't walk 4 years ago. My neuro and his collegues were convinced of my MS. They did another Spinal that came back negative. This baffled my neuro at Jefferson, and all he did was see me and drag me on. I then found another neuro who I had seen as a consult a year prior and did diagnose me with RMMS. I went back to him and found out that you don't have to have a postive spinal to have MS. I take Copaxone. This past August I became very ill again and had to be hospitalized because it hurt to move my eyes around. I had a flare that spring and was treated with oral steroids. This time IV steroids for five days. I am back to where I was, but I have had pretty much pain with this colder weather. However, I prefer it cool. It has been just too cold. I have and am losing hair from too many steroids.
BIG HUGS TO YOU TETSA!!!!! I just started my second time around of the 5 day IV steroid to be followed up with another loving and wonderful 11 days of oral... I am definitely sympathasizing with you on that one. I was diagnosed in March of 2006 and started on Capaxone by May or June I believe.. since then Ive had about 5 relapses.. this one has been the worse.. But hey life goes on right, so I wake up each day, and when I find my legs still work I say a few words of thanks and I pick my head back up and face the day. Much love to everyone in the MS Community!!!
Love you all
Kim
Hi Kim,
I hope you're doing better after all those steroids. Do you get really hungry? I eat like crazy on steroids. Are you still on the oral steroids? I began to have my hair fall out over the steroids, but now it's getting better. I still want to go to a dermatologist to get proper care. My neuro said to use Women's Rogaine. I have been on strike with my Copaxone. It's the most painful shot other than a few others I have experienced. I must talk to my neuro this week.
I am Susan and I have Primary Progressive MS. I will tell more when I figure this site out.
Susan
Please bear with me as I figure this site out. I got the anonymous name down packed,now I want to put my name in that spot.
Can I please blame this on my MS? LOL anyway I will figure it all out soon.
Susan
Hey everyone! Welcome to my MS Community Page. If it's any consolation to anyone posting here: I have to figure this page out too (I say we CAN blame it on the MS - we know how much it has affected us otherwise)!
Thank you all so much for coming in and posting here! Hope the trend continues... (and Tetsa: YOU ARE WONDERFUL!!!!!) Oh by the way - the legal action against HVD is still going on (and they still want to have the case dismissed). It's been over 2 years so far - egad.
Hello it is Susan again. Right now, my MS is treating me ok, It is just this cold of mine that wants to hang around.
Well I made it on SSI. It was the only thing I could get, I couldn't get SS. cause I didn't work long enough, thank goodness I was excepted for SSI.
Anyway, not much going on in my MS department. I guesse that is good, at least it is not bad.
I hope everyone is doing well.
Hey Susan: CONGRATS re the SSI!!!!
CONGRATS CONGRATS CONGRATS! Not an easy task at ALL...
LOL! I can't figure out this site. The only way is through the notices I get in email. Other than that, I can't find you all. :)
Susan, I am so happy for you that you got your SSI. :) It usually takes a few tries though I was lucky.
How are you feeling, Kim?
Yvonne, you are such a sweetie. How are you feeling?
I can't sleep a night lately, and it's driving me crazy. I just slept all day for the 2nd time this week.
Love and hugs to all,
Tetsa
I'm doing ok Tetsa, thanks for asking. I took a MUCH needed break from school this past Thurs (and feel like I need more). Sorry to hear of the sleep trouble you're having...
My story? My name is Dave. I am 46 and right now I am flat on my back staring up into the face of another Dave, the cab driver I use most. I squeezed myself out of the back seat, struggled to my feet and slowly, slowly leaned further and further backward until I reached the point of no return. He's freaking out, telling me I need a walker or a chair, but for me, it's no big deal. I have progressive MS and, over the last four of five years, I've falled backwards, forwards, sideways, at home, at work, in restaurants, in the Metropolitan Museum of Art. I have become a Nureyev of pratfalls. Still, I am generally intact except for the scar tissue on my knees and elbows. It's all about absorbing the impact.
They say cheery things like "I've got MS; it doesn't have me!" But it's sure got me. I still work, but I have a pretty sedentary, routine job and an office full of friends to look out for me. I used to nightclub a lot, eat out most nights, but those days are long gone. Now it's home and Netflix and my trusty DVR. Dating? Hard to sell yourself on the dating market with baggage like MS.
A couple of things really get to me. It's not the falling. I am so far past embarrassment. My attitude is "if I didn't break anything, it never happened!" I am bothered by the fact that our doctors can offer us nothing for progressive MS, I am bothered by the fact that we, in the most advanced nation on earth, must limp along on lame "stay sick" medications while our leaders lecture against stem cell research and cuddle "snowflake babies." I am bothere by the fact that every year my world shrinks a little bit more. Also by the fact that I may never get back to Florence or Venice, may never make it to the top of the Duomo, may never see the Sistine Chapel again.
I used to run 7 miles a day, but now a hundred yard walk is a red letter day. What I wouldn't give for an outlet to work out all this stuff in a helpful way. What I wouldn't give for a cure. Or a president who believed in one.
Thank you for your wonderful post Dave! I am in complete agreement with you in all things in your post!
In addition, when you say that you are bothered by the fact that "...our doctors can offer us nothing for progressive MS, I am bothered by the fact that we, in the most advanced nation on earth, must limp along on lame "stay sick" medications while our leaders lecture against stem cell research...What I wouldn't give for a cure. Or a president who believed in one" you hit the "jackpot" with things that I have been feeling and saying for a while now.
I'm sorry dating is such an hard thing too (I won't say impossible because I still think it is manageable under certain circumstances). People are cruel and I'll NEVER understand the problems they have with us "MSers". I don't understand the stigma attached to this condition (hey - everybody on the face of the planet is going to have health troubles some day!!!)
I've also seen that those of us with MS are incredibly strong and, if anything, we are overachievers. In my not-so-humble opinion: people are LUCKY to have us in their lives!
hey girl I love the site, Keepup the goof work
~April~
Hi Everyone! :) Dave, I am so sorry that you are not able to keep your balance. May I ask what meds you are taking for your MS? I admire you for your fight to stay away from appliances. May I ask how you manage at home, and do you get out often?
Warm Regards,
Tetsa
Dave,
I am so sorry, I didn't see all of your blog. My heart goes out to you. I stay in the house all the time, as I got Agoraphobic after having problems so long. I do get out, but it has to be with someone. I am so sorry that your life has changed so drastically. Do you have lots of friends that your surround yourself with? I pray you do. People that understand. Yet, they are hard to find. I wish while I was blogging to you that I could see your blog. Next time, I am going to copy and past people's blogs so I can respond properly.
Warm regards,
Tetsa
Hello everyone! I'm MiSsy :) I was officially diagnosed with MS 12/99. I am 32 and have had symptoms since I was about 16. When I was about 18 though, i lost vision in my one eye. I went to a neurologist and he threw me on 5 days of steroids and I got my vision back. There was no explaination as to why this happened though.
2 years later the same darkness happened in the other eye. Again the same neurologist put me on 5 days of steroids. I was a kid, I was scard and I didn't ask questions.
Another 2 years later it happened but now in both eyes. Now, something told me to go to a different doctor and find out WHY! SO, I did just that. That is when I was sent for my MRI and told that I have Optic Neuritis & Multiple Sclerosis.
So fast forward to today... I have RR MS & am on daily Copaxone & IVIG every other week.
A positive attitude is the most important key to this fight! As hard as it is we must stay positive and continue to have faith and hope.
Hello there Missy (and everyone else)! Welcome aboard to you all. What Missy said was very true: "A positive attitude is the most important key to this fight! As hard as it is we must stay positive and continue to have faith and hope". I know it's hard to stay positive all the time. Believe me I do. A positive outlook (along with exercise (any kind of exercise. I hear swimming is a really good one but for those of us who don’t have access to a pool, there’s a TON of exercise options available to us including “bed-top yoga”) can go a VERY long way in helping people with this condition.
Hello! My Name is Cindy and I have been diagnosed with MS for 8 years now. I have been on a journey of self discovery since my diagnosis.
Learning to laugh at myself was the best thing I have learned to do! Granted, it wasn't all that easy to get to that point...but the bottom line is "I'm now There"!
"Yeah!"
I saw your blog and just wanted to introduce myself!
Hi there (((((((((Cindy)))))))))))! Welcome.
Hey to EVERYONE: do you know about Stan's MS Angels? Check it out (the BEST support site you could find, imo) at: www.myspace.com/ms_news_channel
New info (PINEAPPLE beats Avonex side effects)
Sorry I haven't been active at all here. I've been trying to get "action" in my other blog at http://groups.google.com/group/managing-avonex-side-effects (and am very active on Facebook). Cheers everyone! ((((hugs)))))
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