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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.
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Wow - I just want to respond to all of you (and give you each a hug)!
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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: |
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First off, big hug! :hug: I remember back when I was first diagnosed -- almost 9 years ago to the day -- and what a terrifying time that was. Everyone deals with it differently and while I soaked up every bit of info that I could about the disease and treatments available, I think I also stuck my head in the sand. I thought to myself, "I have MS, but I'm not like the other people who have MS...they are cripples and have an incurable disease. I'm just a little sick for now but I'll get better and this will all just be a bad dream." Of course that didn't happen, but I also learned over the years that not everyone is crippled by this disease, and even if they are in some way, it hasn't diminished their quality of life. You are inspiring to me because throughout your posts, even tho you are struggling to get a grip on this new reality, you have maintained your sense of humor. Parts of your posts made me laugh out loud! (Especially the one about how they have a smilie for "meltdown" - rofl) That's been my biggest salvation -- having my humor. Whenever I have had to go to the hospital I've become a stand up comic and entertained everyone because humor is my way of dealing with fear. It can be dangerous making your nurse double over with laughter while she's trying to insert an IV tho. Word of caution. :D I agree with those who say you should let your closest friends in on everything, and hopefully not many will turn tail and run. MS isn't catching and it's not the end of the world...maybe they will see that and their compassion will surprise you. As far as what you said about hearing a relapse could last a year, I've never heard that. Doesn't mean it's not true, I've just never heard that. Over the course of my disease, most of my relapses have lasted a couple of months and then the healing process took a long, long time. It's been over 8 months since my last attack and I still notice certain symptoms fading away. I asked my neuro how long the healing process could continue; at what point does it quit. His answer was that it can vary from one person to the next, but that most of the repair is complete within 12 months. Anyhow, you seem like a really sweet girl and I'm so sorry that you had to join the club, but now that you are here, you have a wonderful support group of people who "get it". Welcome! :grouphug: |
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...
Cherie - You are right - I'm still in the "trying to take it all in" mode right now. Unfortunately, I'm no longer in shock or denial. (wish I was though). I know this isn't a dream I will wake up from, not matter how much I wish it so. I also know that I will never be able to make sense of it - and right now, that is just killing me. I don't know if the doctor is trying to scare me or push his own agenda on me. I think he is real with me - he doesn't pull punches or sugar-coat things. I am educated - and I have read whatever I can handle right now re: MS. Put it this way, I have seen the neuro 4x since the first time I saw him. He even told me that he normally does not see patients that often...and I told him I wasn't just a patient right now - that this was too new and I was trying to make some sense out of my world. I told him that when a new symptom appears - I try to talk myself out of it - that it isn't real or imagining it. Then I reason with myself until I truly know that isn't true...and I know it is a symptom. And a few new ones have appeared. Don't know if that means this is technically another exacerbation or if it's just getting worse or whatever. Doctor told me this is pretty aggressive from what he's seeing. No, I'm not dying, I'm not going to die from this. I may rapidly decline; we don't know. I may knock the MS off its feet before it knocks me off mine. As of this moment - I plan on being as aggressive as the MS is gonna be. Fight fire with fire, right? If MS is gonna play dirty, so am I. MS probably isn't expecting me to jump to something like Tysabri so quickly - well screw MS - I wasn't expecting it to show up like it did - stupid UNinvited houseguest! ;) Of course, ask me in 5 moments....and I'll tell you that I wish neurotalk had a smiley icon waving a lil white flag to show you. I'm sure with time I will find my way and come to whatever "peace" i can come to - if possible. I dunno. Again, one of those time will tell things. Sheesh, I HATE those! I'm an impatient person - patience is not my virtue, I'll be the first to admit it (though, those that know me best, would gladly jump in front of me in line to admit that about me, too). Anyhow, I'm having a rough night. Maybe it's the IVSM screwing with my mood, I dunno. Maybe I'm tired of being sick - and this nightmare has just begun. Maybe I feel like I've had these life dreams - and while I never had a guarantee of any of them happening - I kept going through tremendous trials and tribulations in my life in hopes of catching that dangling carrot on the string....and now? It "feels" like there's just a string - where'd my carrot go?? ~Keri |
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: |
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