I just finished my first year. I was diagnosed in October 2011. I had Tysabri Infusion #12 last Sunday!
I am. I was diagnosed in early 2012. I still haven't completely accepted its true, although, deep down, I know it is.
I am in my first year. After years of many symptoms I was finally diagnosed this past June.
I was diagnosed by neuro #1 in July this year, diagnosis confirmed by neuro #2 in August.
I started first injection of Avonex just last week. It took awhile to get the injection training coordinated.
I'm still having a difficult time with the diagnosis. I'm trying to accept it though. That's why I'm here.
I am still waiting to find out what the dxs is gonna come up to be. My Nero was thinking MS. My mom said lupus was ruled out, but I still have my doubts. Good luck to all finding a dxs, and coping with it. May God bless you all.
I'm not sure if I qualify or not. I was first diagnosed in July 2011. The diagnosis was removed in Dec. 2011. Then I was rediagnosed At the end of January 2012.
This is oftentimes the worse adjustment phase of this beast. It's about knowing the disease, the meds, the fine line between symptomatic meds and secondary issues.
So, hope to continue to capture our newly dx'd via this thread, and then add-on to our tips and tricks discussions from the past.
A few of you will see you posted on this older discussion before. Have we missed anything? For our newly dx'ers?
Ck it out, and post on it if so.
I'm thinking about drilling this down a bit, and turning this into a health page.
If you see something uncovered that would be important on that discussion, post to it, and I'll pull all the info for a health page from there.
Those in 1st year continue to add your name here too! It will help us, help you.
1st year year diagnosed July 13th after 8 years in limboland. I had my second Tysabri infusion this morning so far so good
I have been reading the posts for several months but have not formally introduced myself. I was diagnosed September 26, 2012.
I have learned a lot from all of you about MS-THANK YOU! But I have yet to wrap my head (and heart) around what this could mean for my future. There is so much uncertainty-I'm scared.
I'm so scared too. I wonder if the fear ever goes away.
I don't know. I hope so.
I am worried that I may have SPMS, the problems have been unrelenting since last February. I go back to my neuro next week and I will ask. I did 3 days of Solu-Medrol and it helped the tiredness a bit but nothing else. I still work 40 hours a week but have absolutely no life anymore outside of that. Too tired!
Maybe some of the others that are further down the path will let us know how they progressed and how they've coped. I know we are all different though.
My neuro told me in September he really believes MS, I go Tuesday to a MS specialist for a 2nd opinion. Don't believe it could be true. But I know it's something. Things just aren't right
I will hit the 1-year mark on December 27th. I try to spend my days doing all the things I'm afraid I won't be able to do someday. Right now, that's what's helping me keep the fear away. Hugs to all the first years. We can do this together. - Jane
Me!!! I was 'formally' diagnosed earlier this year but it was suspected from October 2011
I was just wondering...why did they remove the dx? That must have been a tough time; one minute its ms, the next not then you're rght back to square one!
Hi, i'm a newbie.. Not really too sure what to do with myself. Not to confident in the meds either. I slept over my sisters house and went to sleep that night and realized I forgot to bring my meds. At around 4am my arms and face were burning and felt like I had the flu. So was that from missing the meds or MS symptoms?
I currently take effectxor and 150mg of lyrica in the morning and take 150mg lyrica and 100mg aponortripteline at night. I also do 44mcg injections 3 times a week of Rebif.. Also what is tysarbri??
My initial DX (10/2011) was SPMS. A little digging into my medical history puts the onset of my MS back 21 years ago!
Since then I have had a few seemingly unconnected, non-life changing issues; tinnitus, urinary hesitancy, ED etc. I went to specialists for each issue and tried to treat them individually. I wondered why my body was starting to fall apart at age 40.
MS explains them all! When I got my DX I was almost relieved. Now I know who the enemy is and can better fight it. I don't focus on all the uncertainty MS brings to the table. I focus on what I can do now. I do everything I cant to help my body fight this battle. I quit smoking after 40 years. I lost 40 pounds. I cleaned up my diet.
Even though I have MS I feel better than I have in a long time. Last night one of my cats was sick. She needed to get to the vet. The vet was closing soon. I had to get my car which I park in a garage several blocks from my apartment. I ran to the garage and when I got there I wasn't the slightest bit out of breath! A year ago I wouldn't have made it half way!
I don't think there is anything to gain from fearing the things we can't control. I'm just going to maximize my efforts in the areas I can control.
Thank you for giving your raw thoughts here.
Few SUPER important topics that stand out to me that we may be lacking ....
-DX (RRMS, SPMS)
Mummy76 - Please tell us what scares you (I listed three above from the others who mentioned). That way if different we can make sure it's included in a topic discussion.
Keep em coming!
I think my fears are the same as others... What type of MS is it really? Where will I be in a years time? Will I be able to walk my babies to school when they are old enough? Will I be a burden on my husband? Am I on the best DMD?
Also tips for talking to a neurologist would be good.
I am in my first year - dx'd 12/13/11 - never forget that day!
My biggest fear is dealing with this alone and progression. I so do not want my parents to have to take care of me this is their time to be retired, travel, enjoy life not have to take care of a middle aged daughter. I know its what parents do - but still how I feel. When I feel like just giving up I think of this and it gives the me energy to go to work and keep moving. I own my home have three pets that also keep me moving - they need me to take care of them. My biggest wish is to be able to quit working weekend also so that I can rest more and spend more time with them!
I am confident I have MS - sometimes wish my neuro would say oops we made a mistake - lol but not so confident in the type. They are saying RRMS but I think I have either progressed to SPMS or have had PPMS all along. In my mind never had any relapses just kept getting worse.
Anyway thats my two cents!
GREAT POST Shell,
Please keep sending us your thoughts and fears so we can help you sort through them,.From experience, the first year or so is the absolute hardest. Learing how wo trust your body again; what's normal and what's not, fears of the future, the treatments, etc.
We want to help . please tell what you need and someone will help you with the answer.
Wishing the best to each of you,
SPMS ain't that bad. I got it and I'm doin' fine :-)
Not sure my biggest fear - I go Tuesday for my second opinion with a MS specialist. Do I want a definate answer or not. If I get one, will I believe it? Probably not. I know Im not ready. I feel like a different person today than just 5 months ago, the day I went to my PCP for 2 seemingly related non-bothersome symptoms - a droopy eye and some trouble swallowing, will it be worse in the next 5 months - or have I hit a plateau? My neuro and PCP both commented it hasn't progressed that fast. Reading this forum, I know it could be so worse. But I no longer feel like me. My body has so much pain and internal tremors, jitteriness - like I want to jump out of my skin, I have lost the ability to eat like I used to and have lost 20lbs, my work is suffering with my memory loss, what will I feel like in a year?
Hopefully I've hit a plateau,
As a newbie, (diagnosed 3 months ago) my biggest fear is the unknown. Will I have another flare? When will it happen? How bad will it be?
DMD... Will it work? or not? Will I have bad side effects? Will I have to take something stronger?
Will I become disabled from this?
I could go on and on.....