I'm hating this (disease)
 

Right now I want to scream. :yikes: :Help: But I dont have the energy to scream. Maybe even to :Sob:

I want to yell - okay, enough of this - joke's over - i get it - ha ha - funny - but time to move on.


Or this: :thud:

This is so unreal. It can't be real. It just can't be happening. I don't know what to do. :confused::eek: How can this be happenning?


I've only been in this for 5.5 weeks. Came from out of nowhere. no warning. didnt have a history of illness - wasnt waiting for a diagnosis. Wasnt sick. strange symptoms started Dec 22...diagnosed Jan 4. WHAT THE HECK IS THAT????

Does anyone else want to just scream? or cry? I dont want a pity party - that isnt me, never has been me. Ive always faced my crap head on. Dont need anyone to play their little violins for me. Just thought i was passed all of this and on my way in life. And now....? what, exactly, do i do now? Yeah, sure, you can tell me that "I have MS, but MS doesnt have me" - but you know what - when I wake up in the mornings and dont know if I will being double vision and if I will be able to drive or work or function for the day - the frickin MS does have me. I have to accept it - even if just for that day - in that moment - i'm not in control - im living under a big frickin question mark over my head - not knowing what my future holds. And i want to tell my doctor to take his grim prognosis and shove it!


:confused:I'm new to this - these forums - and this disease. I did an introduction in the newbies section - you can read it if you like - but to make it short - a few days before Xmas - right side of my face/head went numb. Thought it was because of my jaw - I have bad TMJ problems. Didn't see doc - as it was a holiday week - between Xmas and New Years. Jan 2, my dental specialist said to get to a neuro sooner rather than later. I thought I had a pinched nerve up there somewhere. My vision started going whacky. Next day I was in ER where they did a CT of my head - showed no tumors (yay). Next day - Neuro tells me that he thinks I had a stroke. STROKE?? What the.... :confused: I'm 31 years old - what's he talking about. He rushes me for MRI and MRA. Two hours later, he called me -on a Friday afternoon -he says, "Okay, it wasnt a stroke" - I take a breathe - he e says, "You have MS" - I say "WHAT?" He says "MS. Do you know what that is?" I answer that I do. He proceeds to talk for 12 minutes - I dunno all that he said - I was totally out of my body. I remember asking a few questions about prognosis, treatment, and to what was the most important question: can i still have children. Other than that - I can't tell you much more other than he told me it was aggressive and we needed to act fast.

Even though it's only been 5 weeks since Dx, I just finished my first 30 days on Copaxone. I hate them. Next box arriving tomorrow (Tuesday) morning. I can't take the interferons b/c I have a bad history of depression and my doc doesnt think it is smart for me to take it. He wants me on Tysabri - I want to take Tysabri - he wanted me to wait 3 months on Copaxone first - but I dont want to wait it out. I think he knows copaxone wont be strong enough for me. Interferon might be my 2nd best choice, but still not good enough. I need to see if the Tysabri will work for me. Tomorrow I call and tell him to start the call rolling. Meanwhile, I need to continue to really hope that I even have the RRMS and not PPMS.


Im alone. I have no family. Im young. I feel like my dream of a family and children have just been ripped away from me. So now I dont know what i'm doing anymore. And this lost and alone feeling is scary, very scary. I have a few close friends - but at this point - they have been so good to me - but they are tired - they have given what they can, but they're burnt out now. Plus, ya know, "I looks SO good" - ha! My new walker is being delivered tomorrow - friends havent seen the bruises from my falls so far - caused by the dizziness; they dont see the shower chair and the bars in the shower now, or the welts located in 7 places around my body from the daily injections. they dont see the headache that has been nonstop for 5 weeks now...that even painkillers can even touch for more than hour.

I'm so close to a complete and total meltdown. Oh wonderful, there's even an icon for it: :Melting 2:

Need to use the icons tonight b/c i can actually see them right now - later on, I might not be able to see any of this - as the IV/SM has worn off (had it for 7 days (Jan 8-14 @ 1gram a day) and it worked for a bit - some symptoms let up for a bit - and now they are returning. Anyone know if it is too soon to go back on the solumedrol??

Sorry for my rant. I gave myself my Copaxone shot - and then I couldnt find my mini icepack (a childrens one - wrapped in a terry cover - with a polar bear on it....) Had a lil meltdown from that, too. :(


~Keri

Keri I'm so sorry you're having a rough time. :hug: I despise that saying "I have MS, but MS doesn't have me"! Of course it does! I'm a realist.;)

Everything has just been slammed on you like a sledge hammer. It takes some time (I'm still not believing what is happening to me and it's been 9 mos). I never really thought I had MS during my years without a diagnosis.


Visit multiplesclerosissucks.com . He has some good stuff on there.

Just know that we're all here to help ya! It really does help. I'm starting Tysabri tomorrow. I can't take Copaxone or interferons. Are you on an antidepressant? It can really help.

PM me if you need someone to talk to, anytime:hug:!

Hi, Keri

I am one of those who really hates when people say "I have MS but MS doesn't have me" BS. This disease does what it wants, when it wants and as for being in control of this disease....yeah, right :icon_rolleyes: MS can and does what it wants.

Right now you are scared, overwhelmed and feeling like crap - why wouldn't you, you were just diagnosed with MS. You will go through a whole slew of emotions and it's perfectly normal - your dealing with the grieving process.

I am betting that as the years go by and you learn more about MS you will come to realize you have had this disease longer than what you think. There are so many symptoms which are easliy brushed aside or not even given a second thought. Minor things, odd things gone in minutes or seconds.

I was diagnosed at the age of 25 (46 now) but through the years I have come to realize I had symptoms as a kid. It's odd to experience a symptom(s) in current time and your mind goes "hey, wait this is really familiar" then you start to remember a time before you were diagnosed.

I was married at the time I was diagnosed but we didn't have children. We now have two teenagers :eek: 16 & 18. My children have grown up with this disease and I have had an active part in their lives.

Part of having this disease is symptoms. Some have few to none when not having an exacerbation, some have symptoms that come and go, some have permanent symptoms and yes, some have the progressive MS but we all try to live our lives to the best of our abilities - as you will learn to do, in time.

So, for now - scream, cry, be angry or whatever emotion your having at the moment and know we are here to listen and maybe, just maybe....help :hug:

:hug: Being blindsided is no fun. My DX process took a little over a year, and I was another one that the first MRI was to check for stroke or tumor.

The first year is always the hardest. When I first heard that, I laughed. Going through it, it's true. I know my emotions are all over the place sometimes. I hate being 33 and feeling like I'm 80 sometimes.

I'm also on Copax due to past depression problems. I too hate my shots 'cuz I'm a needle phobe, but I do it because it's better than the options my mom and my grandmother (dad's mom) had.

If you need an tips that might make the shot easier, let me know. I've had some things work a little. Also, the problem is that it usually takes time for the shot to get easier.

Hang in there!

Keri-
I'm with Snoopy - I hate that phrase too! It's a nice sentiment, but MS doesn't have you till it HAS you. :p

:hug:Here's a cyber hug because I know just how hard it is in the beginning. I was a total mess for the first 2 years. Felt like my life had been stolen right out from under me and that my brain was a ticking time bomb. A few more years later.....and I think I'm doing ok. The biggest part of getting ok with MS was participating on these boards and seeing lots of other folks having a good time despite their MS (oh yea, and a good therapist helped an awful lot too.)

Be kind to yourself right now, it's a lot of adjustment to make. It's ok to be angry, cry, depressed, whatever - just try to get it out so it doesn't control you. Look forward to seeing you around here!

Keri,

I am so sorry that you have to go through this. I hate that saying too. I want to throttle people who toss it around.

For me, dealing with this comes in spurts. I'll think I have a handle on everything and all of a sudden it's like I was Dx'd yesterday. (Latest icky reminder: MS Walk) I think things like this have to be accepted/digested/assimilated/whatever in pieces. It's been well over a year for me and I'm still waiting for the "Sorry, made a mistake. Here's your life back" phone call. :icon_rolleyes:

Hold tight to your friends. Mine have been invaluable through all this. If you want to talk about anything, PM me. :hug:

(((Keri)))

I'm glad you found this place - not glad for the reason but you will find tons of support here - and lots of wonderful people. They'll even make you laugh when you think you can't!

I was sort of blindsided by my dx, too. I had double vision which seemed to get worse and worse until I was totally disabled by it. It took a couple of weeks but I finally got the MRI and that showed without a doubt that it was MS. I was relieved, though, because I had done a lot of research on the Internet and found all sorts of worse things - so, in a sense, I was relieved by my dx (I know, sounds crazy).

It's easy to get overwhelmed at first - so many questions, all kinds of new things being introduced, becoming hyper-sensitive to any new symptom or feeling. It gets better - it really does - and you will learn what your new "normal" is and adapt to it. I didn't think I would but you do. It's amazing what our minds can adapt to.

This site is full of wonderful resources and people who are so gracious, helpful and compassionate. I truly hope you continue to post here and get to know everyone. You're not alone - even though sometimes I'm sure it feels that way - and there is always someone here who can relate to whatever you're experiencing on any given day.

Take care - and keep posting! :hug:

Keri,

Like you, I was a quick diagnosis. I actually laughed. I was of the mind that it was a much better thing to have than a brain tumor ( which was my first thought)

You learn to take it one day at a time. You go through the stages of grief, anger, denial, and acceptance. Then you move on with life!

There will always be someone here who has been through something like what you are going through. Just come on in and rant when you need to.
Give to others when you can. Ask questions when you need to. Learn as much as you can.

Take time to smell the roses too! They are still there!:grouphug:

[QUOTE] I actually laughed. I was of the mind that it was a much better thing to have than a brain tumor (which was my first thought) [QUOTE]





Me, too! I had done so much Internet research that I had self-diagnosed myself with a brain tumor and was scared to death! MS was my "preferred" diagnosis and that's what I got. It's amazing the things we end up being thankful for! :)

yeah, me too...

the MS diagnosis was actually sort of a relief, as the first neuro said "Guillian Barre' or rapidly ascending polyneuropathy" or some-such polysyllabic jargon.

terrified me, that I might soon be in a hospital bed, paralyzed, and having trouble taking a BREATH.

I was just 3o, with three young children, and a single mother, living FAR from family, and not yet made many friends in my new neighborhood, when Optic Neuritis and partial blindness struck, out of the BLUE... with horrid headaches.

"We don't know what it is, just have to wait and see...."

a few years later, my feet went numb, and that numbness spread up and Up and UP.... and that's when the doc mumbled the stuff about Guillian Barre'

oh yeah, and MS really DOES have me! (another person mightily PEEVED by that phrase, checkin' in!)

welcome to NeuroTalk, Keri... and feel free to lean on us... we understand how ya feel.

:hug:

PS: next week will be 20 years of having MS, counting from the ON in '88.

Keri,
You have come to the right place, we are all here for you. There are so many wonderful people, all you have to do is give a shout and someone will be ready to greet you with a hug and a shoulder to lean on. I will keep you in my prayers and if you need to vent or just want to chat feel free to PM me.

:hug: Susan

http://i99.photobucket.com/albums/l2.../medicine1.gif


*I'm another one that hates the phrase MS doesn't have me....like h*** it doesn't! :mad:

Hi Keri,

I can empathize with how you feel right now. Nothing makes sense, you're completely overwhelmed and there isn't an end in sight.

We've all gone through this at some point in our disease. You were totally blind sided with the MS diagnosis. Ty might be a good med for you.

I would also suggest that you find a local Psychologist to talk to. Nothing like letting it out to someone who will listen and help you through all of this. It's well worth the time and investment.

Many of the questions you ask have no answer. We are all different in how we are affected. You've just had all of this "dumped" on you and all at once. No time to mentally prepare and adjustment to the diagnosis will take time and patience.

Know that we are all here for you no matter what. We're all concerned for you and want to support you any way we can. Ranting here and putting it in writing is a great therapy plus you get feedback from people with the same experiences.

You will be going through the same seven greiving stages as if you experienced a death in the family close to you. Reseach this and be prepared for it. You're NOT alone! :hug:

Oh wow - Thank you!
 

Okay. Take a breath :):).

I still go out when I feel like crap. I don't drive for the most part. I don't trust my own judgement some days.;) I haven't worked since November; I'm on short term disability. I have broken down and bought a used scooter. I'm not thrilled about riding it around town, but I have to do something to get out. I'm only 41. I live in an area with sidewalks everywhere and I'm close to every kind of shopping you could need.

Do you live somewhere that has public transportation? I know that stinks (literally and figuratively:rolleyes:), but you might want to look into it. Sometimes you can get discounted rates because of crappy diseases like MS. There are few perks to this illness. I would take advantage of them if I were in your shoes.

Do you have a handicap placard? If not, get one. It really helps so you don't have to walk really far and wear yourself out.

I don't know how often you can have the IV steroid treatment. Start a thread asking about it. I'm sure somebody will know:)! Sometimes it just takes time to get better. Give yourself a break. Don't expect so much from yourself. I've done this in the past and it only ended up making me feel worse in the end anyway.

I'm so sorry you don't have any family to help you out :(. Just work on one problem at a time. That's all we can do. :hug: :hug:

I hope you get the Tysabri stuff taken care of. At least you'll feel like you have a little bit of control. In my case, that's the worst part of this. Not having any control. I hate it.

Have you contacted your local chapter of the National Multiple Sclerosis Society? They have tons of information. They've helped me out on numerous occasions. :hug::hug:

It does get better (sort of) once you've gotten over the initial shock. My thoughts are with you and we're here to help any way we can. :Wave-Hello:

Hi Keri,

Since you're a therapist you can save all kinds of time and money just by "TALKING TO YOURSELF!" :eek:

Is that a bargain or what?

Just take things as they come and don't obsess about it. Believe it or not, and I'm sure many here will agree, live goes on and so will you.

Peace be with you. :hug:

What Snoopy said!!!

hang in there...as hard as it is to believe, it does get better!

hi keri and welcome,

i'm sorry for your dx of MS.
just know that what you're feeling is normal.
but that doesn't mean that it's fair. you don't deserve to have any of these problems.

i take copaxone for the same reason. hx of depression.
i used to have bad site reactions but they've gotten a lot better with time.
and i've experimented with the depth of the autoject.

just know that we're with you in spirit.
please let us hear from you regularly.

best,

Keri, bless your heart. We have all felt overwhelmed by this disease at somepoint or somepoints. You are NOT alone here. You will make some board buddy friends.

Being in bed is the PITS. I had an exacerbation that totally wiped me out last year - in the bed, not able to care for myself....my spirit left me.

I had to find it again. And a year later I'm happy to say that I'm self sufficient again...

I found comfort in reading facts about the disease and reading some uplifting stories written by MSers...I also loved and still do to read comedy....Find the book - Coffee in My Cereal by Lorna Moorehead...it is about her first 5 years with MS and it is really funny...

I'd encourage you to look for a MS support group in your area. If you need to invite a friend to go with you and drive you there. You will hopefully find some people there that you connect with.

Slow down....chose ONE chore that you need help with....and ask for help with that. Chose one symptom that is driving you batty and ask the doc to help with that symptom....take it one day at a time. one hour at a time.

One thing that shocked the pants off of me was to learn I wasn't in control of anything. WOW....I really thought if I do this and this than I can do that....MS will knock you for a loop everytime you think this way!

Take care, and do reach out to us. We are here.

Peace.

Keri,

You are WAY too early in this game to be considering as aggressive a treatment option as Tysabri, or multiple doses of steroids. I'm not sure where you've been getting your information up till now, but I would strongly suggest you do MUCH more research before you make any further decisions.

Tysabri has only been on the market for a couple of years as it was pulled off (after being fast-tracked) because 3 people came down with a usually fatal disease, called PML. They suspect that this very rare disease was caused by the patient's weakened immune system (they were all either on a combination therapy, or previously used strong immunosuppressants), but to this day the manufacturer has many warnings about the unknown long-term effects of this medication.

There are still reports filtering in every few months about people having rebound reactions (if pulled off the drug after just a few infusions) and the potential risk for skin cancer from this drug. In fact, someone on another board recently advised us that their neuro was aware of 4 new PML cases, yet to be announced. THIS IS JUST HEARSAY (not yet confirmed!!!), but it was the rumor-mill that revealed the last 3 cases too (just shortly after the manufacture's execs sold off boatloads of shares, THEN kindly announced the potential problem).

There are some neuro's out there that are gung-ho on Tysabri, but this treatment option is still meant to be reserved for those people who have an inadequate response, or who are unable to tolerate other approved therapies.

I have had MS 17 yrs, and before there was access to any "disease modifying drugs" (DMDs). Since there has been though, it has always been recommended that a person try one drug for a period of approximately one year, before they consider a decision on whether the medication is working for them, and/or if the side-effects outweigh the personal benefits. You are only ONE MONTH into this, and you haven't even tried the interferons (the "big guns"), so I am not sure how you could already come to the conclusion that Copaxone is not the drug for you. :confused:

I understand your neuro discussing the potential problems with the interferons (due to your history of depression), BUT that does not mean that Betaseron, Rebif or Avonex will necessarily effect you this way. There are probably 100's of thousands of people around the world that had no other choices until recently, and many of them did just fine on the interferons (even with a history of depression).

All of the drugs we have available to us only work on SOME people. Even though we have averages of "30%" or "68%" efficacy, there are some that are perhap seeing a 100% reduction in relapses, there are others that the the drugs do nothing what-so-ever for. Copaxone might seem to be the drug for one person, and Tysabri seems to work for the next.

In fact, due to the unpredictability and relapsing remitting nature of this disease, it is very hard to know if any drug is helping any one of us reduce relapses at all. Additionally, even though we might be seeing a reduction in relapses, there is still no direct correlation between this reduction and a reduction in disease progression. Hence, the disease process/disability may do EXACTLY what it was going to do, with or without these drugs.

I will answer your steroids question on the other thread . . .

I am not telling you this to scare you, or to put down Tysabri or any other drug. I have had MS and have been on these forums a LONG time, and I probably still don't have all the facts right. However, my point is that you are obviously getting very biased input from your neuro/specialist, so I feel we would be doing you a disservice if we did not advise you to do your own personal research before you jump on any bandwagon so early in the game.

Cherie

Keri,

You were on my mind last night and this morning. Something you said earlier triggered my thoughts.

You said something about your friends not knowing about the potty chair and all that.

Listen, your TRUE friends will not leave you, they will help you through this.

Your not true buddies will leave, but Keri, they aren't the people you need in your life right now.

Maybe you ought to clue all your friends in....it is a very personal decision to do so and I realize that.

Living by yourself, you need a couple of people you can rely on to do things for you as needed.

Keep hanging out here, we will help you through this.

And if you are surprised by the amount each person is writing, each of us is caring for your well being, and you yourself wrote a lot!

hang in there! We are here to help you!

I agree with what Cherie said. Do a lot more research before jumping into the Tysabri pond.

I was only diagnosed in January of 2007. (had been having issues, numbness, optic neuritis, fatigue, the occasional potty problems...since April of 2006) I didnt start my treatment (Copaxone) until September of 2007. (the injection nurse didnt contact me for about 2 months after I got my Rx)

I'm giving the C a year or two to work before I start worrying about trying a different med. I might be having a few weird transitory symptoms of numbness and vision wacky-ness right now, but I do sort of feel better since I started taking the shots. Nothing has really changed, except that I dont feel like I'm getting any new and bizzare symptoms since I started taking the C. I just have weird old symptoms cropping up occasionally. (hopefully that means my lesions are healing or at least not getting any worse)

I was panicked after getting my diagnosis. I was thinking that I was going to die or something. I even wrote up letters to my parents and my boyfriend for them to read after I died (note to self, delete those)

It'll take a little time to calm down now that you've got the diagnosis. I've finally calmed down a bit, I still panic at the drop of a hat, but I feel better now a year or so later than I did last year at this time. Weird as it sounds, I feel happier than I ever did before I got MS (that would be because of my boyfriend, not because of the MS)

If your MS symptoms are causing you a lot of difficulty, making your day-to-day activities extremely difficult, you can ask your doctor if another dose of steroids is warranted. It's the beginning of learning what symptoms you need to worry about, and the ones you can ignore (or deal with)

Look at Cherie's post again, she gave a lot of good advice (she's really good at giving advice)

Welcome, Keri..:)

Hate is such a strong word.....and, yet, in some instances, not strong enough.:icon_twisted:

Hang in there and don't take too much IVSM. It doesn't work as well with the 2nd or 3rd + times, for most people.

Good luck with the Tysabri. I hope it works for you. Just be sure to weigh all your options and the benefits & risks before jumpin in.

:hug:

Hi RedPenguins!

Here is my experience with the dmd's in the past 9 months:

On Copaxone for 8 weeks. I went to see my neuro after the 8th week and dropped my pants and showed him my legs. Then I showed him my arms. I had to inject into already compromised injection sites so I had a large infected, blister on my arm. That was the end of C for me.

On Avonex for 9 weeks. I was so ill from the Avonex my husband even suggested I see the doctor to be taken off of it. I never got over the flu-like symptoms at all. My right eye was nearly swollen shut. My retinologist could find no physical reason for this anomaly nor could my neurologist. I was very depressed and didn't even realize it until I stopped the interferon. My eye went back to normal after a week off of the Avonex.

These are just my experiences. If I had followed the suggested waiting period of a year or two to allow my body to adjust to these medications, I shudder to think what may have happened to me.

If your quality of life is greatly diminished then switching medications is completely justified. I just started Tysabri today after deliberating for quite some time. I'm fully aware of the problems and benefits related to the drug. I am willing to take the risks involved.

Are you having problems with Copaxone or is that you don't like the daily injections? It is ultimately your decision not your neuro's about what you decide to do. Everyone has their own reasons for not wanting to use a certain med. If it's affecting your quality of life, do what you need to do for yourself. Take some time to think it all through.

I hope you're having a better day today:)

((((Keri)))))

Just wanted to give a quick HELLO :)

Yeah...MS hAS all of us, unfortunately....it's the unpredictability of it that is the true downer. DMD's are fine and dandy, BUT...they don't fix the damage that already exists.

But like some pp stated earlier....it's a better dx for me than the brain tumor I thought I might of had after 'looking' at my mri cd while in between doctors visits ......

Just wanted to say welcome!

There are a few key points with your experience though joellelee.

1. You had serious adverse reactions
2. You tried different two drugs
3. You deliberated and became fully aware of the problems and benefits related to Tysabri, before making the decision.

If you can't take the other drugs, and you are fully informed about Tysabri, it sounds like an informed and good course of action for you.

That is not the case with Keri though.

Cherie

Keri sounds like she has done her homework.

Keri reports her neuro spoke with her about Tysabri before she started on Copaxone.

It's between Keri and her neuro, but ultimately, it is Keri who decides what treatment she chooses.

My advice is and always has been to research the choices and make an informed decision about what treatment YOU can live with.

While we all need some time to process the information we receive about MS, the learning curve is not as steep for some and more for others.

While some here might think Tysabri just popped out of the closet, it was in research and development for twenty years. It has proven science behind it. It's not the answer to everyone's MS, but it is another tool in the treatment box for all of us.

Whatever you choose Keri, we are here to support you. Take time to research ALL your options, including the alternative therapies. There are many here that do just fine on them too.

Your MS didn't just happen overnight and it's not going to hurt if you take more time to learn and understand the risks and benefits of each therapy.

I hope you are feeling better today!:hug:

Keri -

I agree with Riverwild - do the research you need to do and make your best informed decision along with your neurologist - I did take steroids and if I had known their long term side effects I probably would not have taken them - at least not 3 times - but that thought is hindsight and at the time I took them I just needed out of the situation I was in - this is a good website and the people here do care and most of all they understand exactly what you are going through --

I agree, research is important. Yes, DH was on Solumedral for many years however, because of it he does have the starting of Cataracts, at the tender age of 52.

Wow - I just want to respond to all of you (and give you each a hug)!
 

River -

You are correct - I did my research. I am not willing, right now, to risk the exacerbation of my depression...I have lived on the verge of suicide for too long to put that back on the table, so to speak (but aha - this dx of MS certainly sheds some light on my always "drug resistant depression)...anyhow....other than the risks of worsening depression, there are the side effects of the interferon treatments. Yes, I know they aren't the end of the world....that being said, I still don't want them if I don't have to have them if I don't have to). And I think that some (this I haven't fully checked on, I admit) are intra-muscular needles - those freak me out. LOL. I'm thrilled I've been able to handle the Copax shots. (though, I spose I would rise to the occasion, but I digress)

Now, how do I know that Copax isn't strong enough for my MS? I don't. How does my neuro know? I dunno - I spose he doesn't either - but I'm relying on his experience and the experience of his practice. Truth of the matter is - it seems that no one has a clear understanding of much of how this disease chooses to do whatever it wants to do when it wants to do it and how it chooses to do it!

The other thing is - I'm not afraid of dying - I'm not afraid of death. I'm more afraid of this disease. I'd be better knowing I had "x" amount of time to live...or whatever. Instead, I have a big question mark over my head of many unknowns. It feels awful. With death - you know what you're up against, with MS, I don't feel like I do. (I may be wrong - I'm new to this - but right now, it feels this way.) Anyhow - I think I can live with physical disabilities thrown my way - however, I know I can not live with my cognitive faculties being messed with - and I fear that. I will not live as a mental marshmellow...and knowing my "luck" - that is the part of me most likely to be attacked first, hardest, and fastest. (Kinda like the dumb luck a world class athlete has where they become a paraplegic, etc.)

Anyhow - I'm willing to take the risks, as of now. Again, I know it isn't the miracle cure. Like everything else - it works for some, not others, not everyone.

As for the interferons, if the Tysabri doesn't work - I am going to have to re-consider those and look more closely and decide what I am willing to live with at that point...but I'm not there yet.

Thank you for your support....

~Keri

Hi Keri,

I feel for you and what you're going through.

You probably don't realise it right now as you appear to be pretty spaced out about this disease at the moment, but a large number of us were once exactly where you are now.

I was diagnosed 30 years ago, and because of severe drug reactions, I haven't been able to take any of the MS medications.

Keri, I can still walk around, granted with a cane now, but that's only been for 6 months and I've only just given up my job that was almost full time in a busy hospital setting.

Not everybody progresses with MS, in fact at least a third of people never do....please some-one help me out with those statistics.

What I'm trying to say is please don't give up hope. Make your decisions on the information that you've gathered so no matter what you decide, you'll know that's it's the best one you could make in the circumstances.

I hope you're feeling a bit better now. Do keep in touch and let us know how you get on.......Hugs from me...:hug:

Im sorry,but I coulnt read all of your post. to long....
but this is exactly how i feel.
Evenone tells me to face it and move on. Yeah freaking right!!!
its not like U can forget about it,cause everyday is something new.
The ppl around me finally got it!!!
just in time for me to end up in relapse!!!
Im like u I dont want ppl sympathy,or "awww,im so sorry"crap, I just want ppl to leave me alone,and dont act like Im faking it when I dont/cant do something.
does this sound right??

Keri,

You are clearly a very bright lady, but you are also experiencing very classic examples of fear and grief, as well as cognitive dysfunction. This is very typical while we are in an attack, and also while we are coming to grips with this dx.

You said:

“I dunno all that he said - I was totally out of my body. I remember asking a few questions about prognosis, treatment, and to what was the most important question: can i still have children. Other than that - I can't tell you much more other than he told me it was aggressive and we needed to act fast.”

“I think the shock of it all is wearing off - and I'm beginning to freak out.”

“My brain shuts down and I can't function anymore.”

“i keep saying that if my disability was more physical I'd be okay - but it's very cognitive and brain centered right now”

“I will be on the phone and on hold with someone - and I'll forget who I'm on the phone with.”

“Im alone. I have no family. Im young.”

Your neuro has scared the wits out of you, and I am very disappointed in him for doing that. Only a few weeks into this situation, and he has told you the disease is “aggressive”, you need to “act fast”, that HE “can’t LIE to get you on Tysabri quicker (but YOU can!)", and that you NEED to start Tysabri. What a biased jerk! :mad:

At this point in the game, there is NO WAY that your neuro could even know the category of your MS, let alone your prognosis.

If you stay on these forums long enough, you hear over and over again that it is not important how many lesions you have, but WHERE they are located. When I had my first attack, I was paralyzed from get-go, had no bladder or bowel control, electric shocks, burning, breathing problems, headaches, pain, brainfog, etc. . . . all from ONE tiny little lesion. That was 17 yrs ago, and I still only have 4 – 5 lesions. They are BAD ones . . . but the number is clearly irrelevant . . . and I am still walking and doing relatively well.

Another thing you will learn is that every neurologist has their own biases. You said you are relying on your neuro’s “experience, and that of his practice” . . . but Keri, if you had happened to walk into another neuro office in your city, chances are that most would not even have CONSIDERED Tysabri as an option for you. Many neuro’s still won’t even rx it to the most hard-core cases, let alone someone who is just starting out.

On one hand, some will tell you this decision is yours, in conjunction with your neuro. This point happens work out conveniently for endorsing your current stated opinion . . . HOWEVER, those same people will tell others to “seek another neuro who WILL rx Tysabri” if their particular specialist isn’t on-board. So really, who’s decision is this and which neuro’s opinion is more valid?

At the end of the day, this is our bodies, our life, and our decision. We can not rely on ONE terribly biased “expert opinion”, combined with 5.5 weeks of terror in order to make a rational decision. Trust me, I know this first-hand . . . and I am a smart lady too.

TIME is what you need to come to terms with what is happening to you. You owe that to yourself.

Cherie

Thanks...
 

Thank you for graciously accepting my posting in the way it was intended. I know that sometimes things come across differently then the way we want them too, and I really am just trying to support you (in my own distorted way). :D

Admittedly, this disease is not pretty some of the time, but the person I've become because of it ain't so bad. You will eventually learn skills & coping mechanisms, and once you cut yourself some slack, you may even learn to like who you ultimately become as a result of this journey. ;)

Cherie

Aww, Keri,

So many of us have gone through what you are going through. There are so many emotions involved with the simple statement, "You have MS." I went through the gamut of emotions. But, I always reminded myself that there are far worse illnesses I could have been diagnosed with.

Everyone here has given great advice! Therefore, I won't repeat any of their advice. Just know that we can understand first hand what you are going through and are here to help and support you.:grouphug: