Go in next week for confirmation of MS... so many questions.

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Go in next week for confirmation of MS... so many questions.

Postby abaack » Tue Oct 23, 2012 6:04 am

I went into the hospital a week ago for five days. After many tests and two MRIs they believe I have MS, but they are confirming with a spinal tap (MS Panel) that I should get back this or next week. It came as a big hit to me as a father of a 13 month old and have been pretty healthy up until now. On the MRIs they did see multiple white spots on my brain and cervix? It scared my wife and I as we thought it was the end of the world, but we are trying to stay positive.

Few thoughts running through my head until I get confirmation:

* How disabilitating is this disease? We've heard positive things about how its manageable and other scary comments from people we know about how they're in a wheel chair and can't do anything.

* Do people normally go see a MS specialist for this or just their neuroligist? I'm scheduled for a visit to an MS specialist to see what he says.

* I've begun reading on websites about the cost of the MS drugs and some are like $4k/month?!?! Someone we know said that her husband doesn't take anything because they're too expensive and I can see why now. Is this typical? Does insurance pay for any of it?

* What is the most common type of drug for MS? I've heard of rebiff or something like that.

* What can I expect if I have the typical MS? Do attacks leave you with problems? How often do the attacks occur and for how long?

Thank you for any help.

Adam
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Re: Go in next week for confirmation of MS... so many questi

Postby Cece » Tue Oct 23, 2012 11:07 am

* How disabilitating is this disease? We've heard positive things about how its manageable and other scary comments from people we know about how they're in a wheel chair and can't do anything.

MS is highly individual. Once you're five years past diagnosis, they can look at how your course has been, and that might help predict what your course will be for the next five or ten years.

I think an MS specialist is a good idea.

There are a lot of drugs, and Rebif is one of them. I was on Copaxone for a few years. It's something to talk about with the doctors. Yes, insurance has always paid for my MS drugs except for the copay.

All the best. I can't really answer about typical MS because mine hasn't been typical, in a good way (infrequent relapses) and I've been treated for CCSVI which changed how I experienced my MS.
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Re: Go in next week for confirmation of MS... so many questi

Postby lyndacarol » Tue Oct 23, 2012 4:43 pm

Welcome to ThisIsMS, Adam. I offer you my standard action plan recommendation:
First, as you may know, MS is a differential diagnosis – made by ruling out other possibilities. Very often, it is not easy or quick to diagnose. IF you do have MS, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas.

Second, I suggest that you first work with a GP or internist, with whom you are comfortable, who is compassionate and who enjoys being a "disease detective." I am not sure that a specialist, a neurologist, is necessary right at the beginning of your investigation. I tend to believe that if you see a surgeon, he will find a solution in surgery; if you see a neuro, he will only see the problem/solution in neurology. I just read an article that summed this up well: "doctors are experts in, and only test for, those parts of the body in which they specialize." A GP can order the tests necessary to rule out some possibilities. Start at the beginning with a thorough physical, baseline examination including blood tests for your cortisol level (elevated with stress), glucose AND insulin levels (these are two DIFFERENT tests, as you know), thyroid hormone levels (TSH, Free T4, Free T3, Reserve T3, and antithyroid antibodies), even a liver profile, and CRP (C-reactive protein) test (indicating inflammation). Ask for a copy of all your test results for your own file. Personally, I suspect insulin involvement and insulin resistance in skeletal muscles.

Third, if you like to read and if you do have MS, start your reading with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD, and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is a good second book to read or even have. You may be able to get these through your local library.

Fourth, and most importantly, from this day forward, I encourage you to eat a healthy diet (a good idea whether or not you have MS). Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar), removing all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), removing all trans fats (These also increase insulin.), and removing white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. Personally, I think that excess insulin plays a great part in MS. My suspicion is that Fatty Liver Disease is also involved, since visceral fat (belly fat) secretes cytokines (like poison to the internal organs), which lead to increased insulin, which leads to inflammation which leads to more visceral fat… And the cycle goes round and round. Diet is important; in fact, you may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).

By the way, in my opinion, since the cause of MS is unknown, I do not believe there can be any effective medication. I have tried three different injectables, I saw no positive effects to them, so I choose NOT to use any of the FDA approved medications.

We are here to listen, to help in any way we can.
All the best to you.
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Re: Go in next week for confirmation of MS... so many questi

Postby Cilantro » Thu Oct 25, 2012 2:23 pm

I am diagnosed with Relapsing/Remitting MS (after an MRI and a spinal tap). Shortly after my first symptom (optic neuritis), I made some dietary changes and my symptoms were fairly mild (no way to say for sure if that was a result of diet, but I believe that it was). After a few years, I made some major life changes (ended a long term unhappy relationship, moved to a more laid-back, affordable place, reduced stress) and as a result, I have had no symptoms or new lesions in the 2 years since I made these changes.

My philosophy about MS is that the body is trying to give signals that something damaging is happening that needs to be corrected - either diet, stress, or something else. Taking drugs to suppress an autoimmune response is like removing the batteries from a smoke detector during a fire; you're not fixing the real problem, you're just trying to ignore it until it becomes unfixable.

The first dietary changes I made were to stop eating gluten, dairy, and legumes (soy is a legume). I continued to have symptoms, but they were mild.

Then, I started following the Swank diet. This is a good one to investigate, but it's been my personal experience that there are some major problems with this way of eating. The Swank diet is all about eating under 15 grams of saturated fat daily. I was doing this while staying gluten/dairy/legume free, which I later learned was essentially the Best Bet Diet. After reading a lot about how essential good quality saturated fat is to health, I slowly started adding back more to my diet, while keeping omega 6 (polyunsaturated) oils at a minimum. I had no health problems, and felt better.

For a while, I was eating a paleo diet (after reading The Paleo Diet by Loren Cordain, which is excellent), but I saw that not eating any grains or starches was having some negative effects on my thyroid (my fatigue and coldness got worse) so I increase my carbs by eating more white rice and tubers, and realized that essentially what I'm eating now is The Perfect Health Diet. Eating this way is how my body seems to feel the best.

Another great resource is Dr. Terry Wahl's TED talk called 'Minding your Mitochondria'. She also has a book coming out (or just came out). She is a doctor who was diagnosed with MS, became wheelchair bound, and through diet put herself into complete remission and is now biking and doing karate. She is truly an inspiration.

You CAN conquer MS. The answer is not with pills or injections, or anything your doctor will try to give you, unfortunately. By refusing to give up or listen to my doctors, I am not only medication-free and asymptomatic, but I also cured my years of IBS, which my gastroenterolosts told me was likely due to my MS and therefore incurable. We all have the power to heal ourselves, we just can't give up.

Here are links to some sites I found very helpful as I was trying to learn how to cure MS:

http://www.direct-ms.org/bestbet.html

http://www.marksdailyapple.com//welcome ... ily-apple/

http://www.nutrisclerosis.com/

http://perfecthealthdiet.com/

http://www.youtube.com/watch?v=KLjgBLwH3Wc
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