I’m to have another MRI (probably within a couple of months) and then we are to talk again…and then he wants me to start a CRAB drug.
I hate everything about this. I'm not one of those people who hardship makes stronger, I'm not going to learn to paint or suddenly glow with a higher understanding and acceptance....I'm miserable and pissed off.
The doctor never makes me feel better.
I've been lucky as I've seen two nice neuros. The best advice I got from the one I really trusted was 'do something'. I will be starting REBIF fairly soon. I mentioned other options to him but he said that the CRABs are the only drugs where there is sufficient trials data. I know these drugs aren't brilliant and that they may have little impact in the long run but I've also heard that some on them do well and also that it gives you some sense that you have some control.
I feel for you as the cognitive impairment bit is the bit I would not be able to handle. When I met my neuro last week he ran through the lsit of symptoms and whne he siad 'memory problems / cognitive impairment', I told him that I wouldn't be there if I had.
This disease is as grim as it gets - the double whammy of (possible) physical and mental disability / impairment. It haunts me every second of the day - the killer is that it never ends which is so difficult to cope with.
So I haven't chered you up, but I'm sure many of us feel the same way as you. Whatever you decide, do something.
All the best
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I had one a year ago and go for another week after next. It's good to get one to see where you're at now, for future comparison. I've been on Aricept and Namenda for the past year, and it will show if they've helped or if things have gotten worse. Expensive (around $1000 if memory serves me right, which it usually doesn't!), and I was not very satisfied with the feedback - Slightly below average, but within normal limits for my age (mid-40's). Didn't address anything specific about what the impairments were or how to compensate, other than common sense things that I was already doing - notes, daytimer, pda, etc. I'll be asking more pointed questions this time for sure.REDHAIRANDTEMPER wrote:..now i have to go for this neuropsych test..for the memory loss just to be safe he says..the problem is i notice the loss have for a couple of months now...i cant seem to remember words sometimes..heck i have forgotten my kids b days and i have never forgot those....so frustration and the sheer terror of the fact i might forget things quicker then i want to...so yes i know i get frustrated..as i am sure everyone else does...feel like i am going to pull out my hair if i dont get something done soon....
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Don't let some jerk bring you down. You only see him/her once in a while. You have to deal with this situation every day.
It does sound like he is giving you decent advice, he just doesn't have social skills. You should probably listen to his advice, but don't listen to his tone.
I don't want to sound like some polyanna, but keep your spirits up! He seems to be giving you the worst case senarios of what might come to pass. Most cases don't come to be as bad as he is describing.
I know this situation sucks, but if we get down then it wins.
Yeah, it's tough and scary, but find a reason to laugh. Rent a funny movie. Talk to someone that makes you smile. Read a book. Just keep your mind occupied. It may take your mind off this disease for a little while anyway.
I certainly don't have a cure, but try to have fun. It's not easy, but sometimes it's all we've got.
You may be interested in reading The Better Brain Book by Dr. David Perlmutter. He discusses several techniques for improving cognitive function (I even tried them for a little while after reading the book). He also discusses tips on how to avoid circumstances which lead to a progression of cognitive decline.batpere wrote:Didn't address anything specific about what the impairments were or how to compensate, other than common sense things that I was already doing - notes, daytimer, pda, etc. I'll be asking more pointed questions this time for sure.
I wish this didn't consume every thought, every day. Maybe it's because I've had so much to deal with over the last couple of years that makes it harder to adjust to this (two years - both parents died, fiance break-up, diagnosis, major move to another province). I don't mean to be a martyr, everyone had their own bag of hammers, but it would be nice to have just one freaking major blow-out to deal with....what are ya gonna do? God is a real comic isn't he?
Think about it, your the doctor. You have a patient now diagnosed with MS. Do you tell them nothing or tell them everything? If they show new symptoms at least they know what to expect and what they are up against. And it gets the doctor off the hook if they are wrong. The only thing that gets me is that they aren't the ones loosing sleep over it.
I say live life to the fullest and take it day by day. I was making myself sick worrying about it for a while there. Now I take my daily shot and get on with my life. It's to short to waste pondering the IF's every second of the day.
Sorry. I am just tired of MS controling me. I'm getting on with my life and I will deal with new obsticles when they arise.
* I don't suffer from insanity, I enjoy it!
I've had two MRIs since my diagnosis - both showing multiple active lesions in the brain and cervical spine. After my second MRI, I was quite scared too. I went to see my neuro and his assistant essentially told me that my prognosis is not good, that I will most likely be paralyzed from the neck down. Well, needless to say, that was quite effective - I was scared enough to listen. This event was in December 2004. His recommendation - Tysabri. I agreed - doubting my decision to take LDN. I even asked the assistant, "Are you sure this is safe - would you give this to your family member?" He replied, "Yes, I would give it to my sister."
I left expecting to hear from him as to when to begin treatment - at the time Tysabri had to be cleared through the insurance company. I didn't hear from him - but knew I had to do something-so I got my LDN and started it. I never did hear from the assistant. I received an email alert that Tysabri had been recalled.
I've been on LDN since December 2004 and have not had a relapse since. And I'm still walking.
I feel the same way - the doctors are depressing and scary. The LDN hasn't helped reverse any of the previous damage, but I think it has prevented further damage. If LDN is working for you, stick with it!
Finally, I recommend The Anatomy of Hope - How People Prevail In The Face Of Illness by Jerome Groopman, MD. This book really gives you insight into hope, but also doctors. Another good book is [ i]Life on Cripple Creek.[/i] A positive, humorous look at life with MS.
I hope you do something - and I hope that something is to have faith in yourself and your decisions and stay with the LDN as long as it continues to work for you.[/b]
I'm in a similar sort of situation. I'm supposed to get another MRI in January, it will be about 1.5 years from first MRI and diagnosis. My neuro really wants me to get on a CRAB. I tried Copaxone and had bad injection site reactions, so that one was out. And I've long ago decided that I'm not trying the interferons. I feel relatively decent right now, and interferons are not going to make me feel better and probably will make me feel much worse. All things considered for my situation, I'll take the better near term quality of life.
I too have found the neuro visits pretty dispiriting events, where I go in quarterly and get examined for signs of progression. Everyone else in the dark and windowless neuro waiting room has a bad and probably incurable problem and we get entertained with a TV tuned endlessly to Fox News while we wait for more bad neuro news. The doors out of the waiting area are all unmarked and angled oddly, and people who get disoriented easily get lost and flustered and try to go the wrong way. And so forth. A quarterly purgatory. I always walk out feeling much worse.
I have to try hard to not get sulky and blame the neuro for the (sorry) state of MS treatment. I think being a neuro is far more depressing than being an oncologist, so there is not much cheer on either side of the table. The clinicians don't have much "proven" to work with and I don't look for much comfort from the neuro. I appreciate that the neuro is pushing for early treatment with CRABs, because the conventional wisdom is the earlier the better, and I respect his viewpoint on it. I just don't want to do it because I don't think it will help me enough to offset the side effects.
I'm thinking about not getting another MRI, because either way it doesn't sway my decision about treatment. Plus I have to shell out bucks for it. On the one hand, if all is quiet in my head I'll be happy, and if I have a bunch of new lesions I won't be, and if I don't see my brain and the old holes in it again, well that is ok too. I feel that I've made some changes in my life, diet, etc, that have been helpful. So I feel I am doing what is best for me. I'm not in denial - odds favor that I'll get worse, but I'll take the best "now" I can get.
So in terms of conventional MS treatments out there, I'm doing nothing. For my general health, I am doing "alternative" things like greatly improving my nutrition and feel other aspects of my health have improved as a result - hard to say about the MS yet but no relapses. I certainly don't endorse doing nothing to anyone, because treatments are individual decisions depending on one's symptoms, life situation, etc., and everyone is very different. Conventional approach says to take an MS med and it is probably the best course to give it a shot (pun intended!). Some people seem to do well with CRABs. I didn't, so not taking one was my choice and I'm comfortable with that. I keep looking and hoping for new stuff.
Good luck with your doc. Don't let the dread get to you.
Anyone who has ever been to Nebraska knows how extreme our weather can be. It is a perfect metaphor for my MS. When it's cold you forget what it feels like to burn in the summer. Works the same the other direction. Right now I feel like I will never be well again. When I am better I forget what it's like to be so sick. Trust me, I've suffered though severe depression and anxiety and I'm still the same me. When I feel like I can, I still walk not run, three miles a night and lift weighs. I'm still the same me only slightly damaged.
They seem to be a breed apart dont they! Echos of the conversations I've had with the neuro treating me - I cant quite manage to claim him as "my neuro" since I'm scheduled to see him only every 12 months - "until you get worse"!
But here's another book to check out "Living a Healthy Life with Chronic Conditions: Self-Management of Heart Disease, Arthritis, Diabetes, Asthma, Bronchitis, Emphysema & Others" <shortened url> by Halsted Holman, David Sobel, Diana Laurent, Virginia Gonzalez, Marian Minor, Kate Lorig (Editor) which I think is the N. Am version of "Self-management of Long-term Health Conditions - A Handbook for people with Chronic Disease" ISBN 0923521747. The authors have some good suggestions about communicationg with health professionals with ideas backed by proper research (Stanford as I remember).
(For UK people: Anyone signing up to the Experts Patients Programme in England and Wales - free 6 week course run by local PCTs - get a copy of the book for free too.)
Hope the blues pass off!
I am what I am
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