hi gina,

let us know what your dr says. being a dr i bet he will push for meds. especially since you've had a flare.

i know nothing about the swank diet and i can tell you've done a lot of research. there should also be a lot of info on legitimate alternative medicine.
when i lived in denver my neuro published a book on it. his name was allen bowling, md.

being an RN my mindset is for meds. since MS is currently described as an incurable, progressive disease my feeling is that the meds help to decrease disability. the problem is that there may be disease going on and you don't know til you have a flare, or active disease in the CNS. but again, that just me.
that's why it's such an individual decision.

there are many of us that aren't on meds.

either/or? considering both?

watching an interesting program with Charlie Rose. A Tysabri success story.
Not a drug that I am open to taking.

Nor was I until a few IPIR's to Copaxone and my neuro suggested Tysabri.

I replied I was kinda keeping that up my sleeve for when I really needed it.

He replied 'By then it will be too late. Use everything you can in the early stages to stop the progression to the later stages'.

All being well with blood tests, I will be starting on Ty. Which according to my neuro is currently the best treatment for RRMS available.

Gina, I'm a Swank-only gal, have been on the diet for about 26 years. I started soon after dx, because I knew a doctor socially who was on it and had done very well. I had a history of reacting badly to drugs (it was an underlying genetic problem) so I was not anxious to try drugs. But I read the Betaseron box, and it talked about depression, and I'd already had that on and off--sounded like a big "NO" to me.
Let me tell you one thing about Swank diet. Dr. Swank said that after a year on it, you could modify it a little. Like eat 2 ounces of red meat a week. I never went to eating red meat (hadn't eaten it much anyway), but in later years I have added more eggs than Swank recommended (he recommended 2 a week). The fat in eggs seems to be a whole different ball of wax to my body than the fat in red meat or other sources of saturated fat such as heavy cream. I also occasionally eat cheese now, but in the manner of the French, a very small serving, and I look at the package to determine whether it's highest fat cheese or not. I would never eat a large serving of cheese such as one gets in some casseroles.
It sounds like you are already partially on the Swank, as I was before dx, simply because I could not tolerate high fats anyway. So I recommend it.
I do take some drugs, which are on the "safe" list for Porphyria, my underlying genetic disease. I take a very small dose of Klonopin for spasticity and general muscle relaxation--it's a small dose, so I can still drive. I take only Demerol for pain, but that very rarely, and I have never become addicted to it. I take Diazide, a water pill for swelling. Also l/2 of a Zyrtec for itching, which comes from my third major disease, Polycythemia Vera. I have to be very careful with local anesthetics, but I give my dentists and dermatologists my "safe" list. Getting the Porphyria dx 16 years ago got me off of years and years (decades) of experimenting with unsafe-for-me drugs--doctors were basically ignorant, just plain ignorant, as Porphyria should be in the differential diagnosis for certain symptoms, but it's rare. Much rarer than either MS or PV.

Dejibo's experience with drugs is similar to mine although I never took an MS specific drug. I could not take Baclofen or Zanaflex, so my neuro recommended a fairly high dose of magnesium instead, for spasticity and cramps. I did try Interferon-B for Polycythemia Vera, but had to stop within less than two weeks. I took radiation at Mayo to reduce my blood platelets--didn't want to do that but I needed to do it.

Welcome to NT, Gina...sorry you have joined our little club, but at least you're not alone on your journey...

My neuro believes that the meds, COMBINED with nutritional eating program and exercise and rest, is the best way to keep healthy. and also to have a strong team in place, which includes your doctor, nurses, family and friends.

None of us experiences this disease in the same way...therefore we don't know the long term effects of the meds now available. but after seeing so many deteriorate after several years of MS before the meds were available, I'm taking no chances and am being a good girl and using my Copaxone (most of the time).

The most effective way to live a high quality of life is to manage the symptoms-are you keeping a symptom journal with dates/types of symptoms? It sounds as if you're still not over your flare, or maybe the heat is ramping the symptoms up a bit for you. Remember to keep your core body temp at normal. My neuro prescribed slurpees as soon as I feel a bit overheated-my exacerbations come on strong and quick when I get heated up.

as for spasticity/pain, etc., make sure you tell your neuro about all of these types of things. There are many meds that make symptoms bearable.

And also-depression IS a symptom of MS...make sure you watch out and get treated so it doesn't overwhelm you. MS is difficult enough without dealing with depression as well.

Lots of hugs, info and laughs on NT...keep us up to date on what's up, ok?

Diet was my final answer! About 4 years of Swank activity for me. 10 months on Copax was all it took for me to be done with the big pharmas.

I do rely on pain medications to get through the day and function at work. Sadly, my MS-y symptoms are primarily pain-related, and quite severe (neck up - burning mouth syndrome, Trigeminal Neuralgia, headache, migraine..), but that's the extent of the drugs.

DMDs, not for me. I keep things in check with diet and exercise. Happy overall with how things have been, despite having this crummy disease.

I hope your neuro is more understanding than mine was about the diet. Mine wanted to hear NOTHING of the Swank diet, or hear the word "diet" uttered what so ever in his office. He cut the discussion right off and launched off into a Tysabri discussion, exploring 'avenues' as to how he could work to get me to qualify under New Brunswick Provincial health care funding for the infusions.

........ridiculous! I'd not touch Tysabri with a 10 foot pole. I'd sooner try an interferon prior to Tysabri. Sheesh! Calm down docs! Guess they're not padding their pockets enough these days huh?

This is timely and interesting:
Especially the 'subgroup' comments


Posting of the following article has been approved by The Doctor's Guide to the Internet(TM)) (http://www.docguide.com)

Source: DGNews

Benefit of Interferon Beta for Relapsing-Remitting MS Questioned

CHICAGO -- July 17, 2012 -- Among patients with relapsing-remitting multiple
sclerosis (RRMS), treatment with interferon beta was not associated with less
progression of disability, according to a study published in the July 18 issue
of JAMA.

According to the authors of the study, there is a lack of well-controlled
longitudinal studies investigating the effect of interferon beta on disability
progression.

Afsaneh Shirani, MD, University of British Columbia, Vancouver, British
Columbia, and colleagues conducted a study to investigate the association
between interferon beta exposure and disability progression in RRMS. The study
included prospectively collected data (1985-2008) from British Columbia.

Patients with RRMS treated with interferon beta (n = 868) were compared with
untreated contemporary (n = 829) and historical (prior to the approval of
interferon beta; n = 959) groups.

The primary outcome measured was time from interferon beta treatment
eligibility (baseline) to a confirmed and sustained score of 6 (requiring a
cane to walk 100 meters; confirmed at >150 days with no measurable improvement)
on the Expanded Disability Status Scale (EDSS, range, 0-10).

Follow-up time (first to last EDSS measurement) differed between groups, being
considerably longer for the historical untreated cohort (median, 10.8 years),
who by definition entered the study much earlier than the contemporary cohorts.
The median follow-up times for the contemporary cohorts were 5.1 years for the
treated group and 4.0 years for the untreated group.

The observed outcome rates for reaching a sustained EDSS score of 6 were 10.8%
in the treated group; 5.3% in the contemporary untreated group; and 23.1% in
the historical untreated group.

“After adjustment for potential baseline confounders (sex, age, disease
duration, and EDSS score), exposure to interferon beta was not associated with
a statistically significant difference in the hazard of reaching an EDSS score
of 6 when either the contemporary control cohort or the historical control
cohort were considered,” the authors wrote.

Further adjustment for co-existing illnesses and socioeconomic status, where
possible, did not change interpretations.

“In conclusion, we did not find evidence that administration of interferon beta
was associated with a reduction in disability progression in patients with
relapsing-remitting MS,” the authors wrote. “The ultimate goal of treatment for
MS is to prevent or delay long-term disability. Our findings bring into
question the routine use of interferon beta drugs to achieve this goal in MS.”

“It is, however, possible that a subgroup of patients benefit from interferon
beta treatment and that this association would not be discernable in our
comprehensive ‘real-world’ study,” they added. “Further work is needed to
identify these potential patients; perhaps through pharmacogenomic or biomarker
studies, paving the way for a tailored, personalised medicine approach. Our
findings also encourage the investigation of novel therapeutics for MS.”

Tobias Derfuss, MD, and Ludwig Kappos, MD, University Hospital Basel, Basel,
Switzerland, wrote in an accompanying editorial that the “rigorously collected
data of Shirani and colleagues reinforce the conclusion that the associations
between use of interferons and long-term disability, although plausible, remain
unproven.

“As Shirani and colleagues suggest, more effective treatment options and better
criteria that lead to more accurate selection of patients who might best
respond to these treatments are needed,” they wrote. “The relatively low
progression rate in the untreated contemporary cohort is reassuring because it
indicates that despite the unreliable explicit prognostic criteria,
neurologists and patients in British Columbia seem to have made the right
choices.”

SOURCE: JAMA