Neuro tomorrow - any advice?

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Neuro tomorrow - any advice?

Postby MrsGeorge » Mon Jan 07, 2008 9:54 am

I am seeing a neuro tomorrow for a first appt. I had a v negative experience with one in sept who basically dismissed me cos I was moving towns only a week or so after the appt and he couldn't be bothered.

Since then symptoms have gotten worse and I now have another initial consult in my new town. This time (unlike last) I have written down my symptoms so I don't get flustered.

Is there anything else I should say / do? Do you guys have any advice?
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Postby jimmylegs » Mon Jan 07, 2008 10:01 am

i have only dealt with one neuro, but plenty of doctors and lab techs and so on. i would say, just be aware that you know yourself better than any doctor, you live with yourself 24/7, and what you have to say and what you have experienced does matter, and does have a bearing, even if they are dismissive.
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Postby MrsGeorge » Tue Jan 08, 2008 4:45 am

I saw the Neuro and he was lovely - he did a bunch of tests which have left me feeling very wobbly, and took blood. He is sending me for a head and neck MRI and referring me to physio to see if they can help with my leg and arm.

Obviously he can't give a diagnosis without test results but he said that his examinations, and what I have said all seem to indicate MS. He is referring me to the MS specialist and to an MS nurse and talked briefly about drugs (beta something).

It may sound stupid as MS has been mentioned in the past but hearing it from a neuro has really thrown me. It's taking just about everything I have not to cry. I thought I wanted some answers but now I'm not sure. I'm feeling reallyscared and confused right now.
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Postby jimmylegs » Tue Jan 08, 2008 8:04 am

it is a very scary time; i feel for you. sounds like they're on the interferon track for treatment. keep your chin up, and in my experience, reading will help you beat down the fear and uncertainty. you might be in for a series of really mindblowing light bulb moments. take what positives you can find in the future learning process and don't worry, the scary time does not last forever!
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Help is out there

Postby Longing4Cheese » Wed Jan 16, 2008 1:45 pm

Mrs. George,
I read your post and I feel compelled to reply. As someone said to me when I posted my first post here a few months ago, Welcome to the club that nobody wants to belong to.

I was diagnosed in June-July 2007, about six months ago, and so my memory of what it's like to get the news is still quite fresh. Indeed, I'm still adjusting to the idea of being someone living with MS. However, I have moved from the shock and grief of facing such an apparently huge involuntary change in my life to feeling cautiously and, I think, realistically optimistic about my prospects. None of us wanted this disease, nor the job of learning so much about it (I have enough projects without MS, thank you!), but for us confirmed PWMS (people with MS), it's here and the best thing we can do is to face it consciously, with the whole range of our beings.

I agree with the other reply that, at least for me, getting more information (through reading, online and in books) has been my lifeline. When I went to the major foundations' websites, their attempts at making newly diagnosed people feel better actually creeped me out. I didn't want pats on the back from an organization, I wanted better information that applied to my case, since my history was in some ways atypical and in some ways typical (since then I've gotten the impression that a lot of MSers have idiosyncratic presentations of symptoms). Give me useful information, not platitudes, was my feeling.

I don't know you, so I won't presume to prescribe what you need in this difficult time, but I can make some suggestions based on what worked for me.

First off, in my limited experience, I think the most important thing is to have a good, if small, TEAM of allies. A spouse, a partner, a close friend. A doctor whom you trust and respect and who trusts and respects you. Other people who have MS, who are further down this path than you are, to let you know what might (and might not) be ahead for you, and share the wisdom of their experience.

You will find that if you reach out, help will come from a wide range of places, some of them unexpected. Many of your friends know someone with MS who might be available to talk with you and share their experiences, where they found good information, and what doctors they liked or didn't like.

Again, from my limited experience, I find that a lot of neurologists, like a lot of doctors in general, have terrible interpersonal skills. Dump them and move on -- you don't need that on top of the challenges of dealing with MS. Also, as you will see if you keep doing research into the theories about how MS works and the various approaches to treatment, there is a lot of uncertainty about MS, and there is an orthodox medical approach and a wide variety of unorthodox approaches, each with their own amounts of evidence. One of the most important things, I think, is to find a neurologist whose attitude toward alternative (or 'complementary,' if you prefer) therapies is compatible with your own. If your reading convinces you to try the Swank Diet, for example, but your neuro disdains Dr. Swank's research, you will be in a tougher spot than if you can find someone who is open to looking at credible approaches other than the 5 FDA-approved drugs.

My fiancée has been wonderfully supportive, emotionally, intellectually, and logistically. One of her colleagues at the university where she teaches has been living with MS for about 20 years, and lent us a stack of books. I've also found some good books through Amazon.com. So far I've only read two (been busy with work), but I would recommend them both in this order:

First place: TAKING CONTROL OF MULTIPLE SCLEROSIS - Natural and Medical Therapies to Prevent its Progression - by Professor George Jelinek, MD.
Written by an Australian MD (emergency medicine specialist) with years of experience editing a medical journal, who is the one MD I've found writing on the subject of MS **who has MS himself**. His experience as a doctor and as an editor of a med journal gives him the tools to examine clinical trials performed on alt. therapies and evaluate their merits. His experience living with MS gives him the patient's perspective -- if something looks extremely promising as a treatment, but didn't live up to the gold standard of testing because of some unfortunate flaw in the study, perhaps the results shouldn't be tossed out the window. The influence of economics (and profit motive) in medicine are examined at the same time. It includes a very good summary and elaboration of the findings of Dr. Roy Swank, Ph.D., creator of the Swank Low-Fat Diet for MS.

#2: CURING MS, by Howard L. Weiner, MD
This, like Jelinek's book, is also a very readable, personal account, this time of a neurologist who has been a big researcher in the field. You will learn tons about the history of medical science's theories about the disease. That sounds kind of dull and pedantic, perhaps (and in places the book has too much detail!), but mostly this is an engrossing story that follows the author's career as they tackle various problems and test theories to find a cure to MS. At its best it's like a medical mystery novel, and you will learn a LOT of vital information and principles which will serve you well as you read about current treatment options. This is the mainstream medicine perspective; he brushes off the low-saturated fat diet (replacing sat fats with good monounsaturated fats, Omega 3s, etc.) in one sentence, saying it's unproven (Jelinek demolishes that argument, in my opinion), but it's a pretty well-written and engrossing presentation of the mainstream models, which are certainly important to understand.

#3: THE MULTIPLE SCLEROSIS DIET BOOK - A Low-Fat Diet for the Treatment of MS, by Roy Laver Swank, MD, PhD, and Barbara Brewer Dugan.
This is the original book about the low-saturated fat diet that Dr. Jelinek refers to. The most recent edition was published in 1987, which was before all the Alpha and Beta Interferon drugs were created. I read this before I read the Jelinek book; I think you should read Jelinek first, and, if you want the full story, read Swank. You don't have to read the second half of the book, which is all recipes, because I found them to be very old fashioned and yucky in a 1950s Betty Crocker kind of way. Once you get the basic idea of greatly reducing saturated fats, cooking with olive oil, etc., you can do a lot better on your own in the kitchen.

My first neurologist did a good thorough job of diagnosing my MS, and in the process he gave me very little information about MS. He kept telling me to "do my homework," meaning reading books and the internet. I did, and what I learned led me to ditch that neurologist and look for one that was aware of treatments other than the 5 FDA-approved drugs. My 2nd neurologist just retired, which is fine, as he was better than the first one, but still not as good a fit as I want. I am still looking, but have some promising "irons in the fire". Meanwhile, I am treating my situation with a change in diet, some nutritional supplements, and exercise. I have had two MRIs six months apart, and I look forward to comparing them when I find my next neurologist, whom I hope will be a "keeper."

Please be aware that MS is a manageable disease, and if you're a normal person you are probably imagining a future that is far, far more bleak than it really will turn out to be. There is a lot of information out there; just take it at the speed you feel comfortable with. You can't take it in all at once, and you don't have to.

I would recommend that, even though the doctors seem to be in a big rush to get you on one of the ABCR drugs (Avonex, Betaseron, Copaxone, and Rebif), you do enough reading so that this is an informed choice. Even if you choose to go on one of those drugs, I urge you to learn about and go on a low saturated fat diet, and take Omega 3, 6, and 9 in some form. Your reading will tell you why this may be the best thing you can do for yourself.

This forum and the community it represents is really good -- warm and supportive and helpful. It's the best I've found so far. Spend some time here and see if it can be useful to you.

I hope I've helped.

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Postby jimmylegs » Wed Jan 16, 2008 2:07 pm

ya the supportive team thing is important, i think.
from my family, nobody really knew anything about it. people felt bad, and either were glad about my decisions or outright furious. luckily, i was able to bolt when needed.
on the professional side, i had quite the little group. the longest lasting are my family doc, and my neuro. still in the picture but back burner are my naturopath, and a particular pharmacist. i also had brief contact with the mcmaster ms clinic (blech), the local ms society (double blech), the mcmaster drug info centre (better), a dietitian, a counsellor, a physiotherapist, and a personal trainer.
my work has been pretty great, setting me up with appropriate duties and letting me take on more physical work (and potential risk) as i improve.
over the net, the academic journals and this site have been some of the best and most constant sources of information and support.
so, you can get a lot on your side and this site could be one very strong positive resource. good luck with everything!
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