This Is MS Multiple Sclerosis Community: Knowledge & Support

I'm not sure where to put this,

Briefly, a way too long introduction. I was dx 20 years ago this month, at age 19 (trouble since I was at 16 if not earlier.) Anyway, at first I relapsed every summer, at 20 had one big one that left me moving back in with my parents, left side trouble. Those were pre-internet pre-any treatment days but I had a aunt-in-law that had a cousin-in-law that had ms and she got word to me to avoid saturated fats and to take evening oil of primrose.

So I did. I cut out red meat, dairy, fried foods and took a high gla supplement. I improved. And was, essentially, fine. I had a child at 28 and another at 30. In about 2005 I had an MRI for the point of getting a diagnosis of benign ms. Turned out my brain was riddled with plaques and lesions and the doctor was pretty surprised about how my inside and outside were so opposite. Over the next decade I slowly got out of eating healthy food (too busy taking care of little kids) and by last year I was in the habit of eating big macs.

In the meantime, over the past 3-4 years I have been feeling worse and worse. Usual stuff. Over the past year my ability to walk without resting is limited and my legs turn to cement (my poor dog.) Fatigue has gotten worse and worse. A bought of double vision. Ringing in my ears. Foggy brain. Now my legs are in spasm.

As I've largely dealt with this disease by burying my head in the sand it took me a while to clue in that the leg spasms were probably from ms. Slowly waking up after so many years, I got myself to a massage therapist. And I got myself some over the counter muscle relaxants.

I went back to an extreme version of my previous diet. (Can I say, I'm really glad there was no internet when I was diagnosed, I would have been way more freaked out.) I have had almost no saturated fat since last week, nor red meat, dairy, gluten and very few peas/legumes. I have started a gla supplement. Wow, I haven't had this much energy in months and months and it's only been a week (Not to say I'm not fatigued, the bar was low.)

Finally, my question, is there a point to going to the doctor? (I should mention, I've moved back and forth between Canada and the UK and in the UK have never sought treatment for this and am currently in the UK.) I don't think I'm bad enough to warrant the meds. My neuro in Canada never seemed so enthusiastic about the meds so I hear his voice telling me they aren't worthwhile for me. So is there a point to going to a doctor if I'm not going on the meds? I don't feel the need for someone to record my symptoms just for the sake of it. Do they have any other point?

No opinions? How about this question, what does seeing a doctor do for you personally? Why do you go?

tried to answer a couple times yesterday but don't know what to say.

i can answer one part - why do you go. my wife continues to go because one day she hopes to meet a good one and dump me. HEHEHE

my wife will see her neuro soon - just to get a referral to physio and to establish herself with the new clinic. if they offer her drugs like they do every other visit she will refuse.

i don't want to tell you what to do but ask yourself why shouldn't you go (costs, afraid, waste of time etc)

Mostly it's the waste of time factor.

Why does your wife refuse the meds? My neuro in Mississauga was never keen on them. Well, they didn't exist when I was first diagnosed and then after the second MRI that showed so much activity he was skeptical about how effective they really were. He said that there was a big drop off in usage from when they first came on the market which indicated to him that for whatever reason people just didn't think they were worthwhile. Maybe I just had a skeptic doctor.

she has done the usual set of drugs for many years. about 5 or so years ago they stopped working.

she had progressed from RR to SP. now the recommended drug is tysabri (spelling?). her neuro's argument against CCSVI was that they did not know the long term affects of having her veins ballooned. she laughed and told them "you shun a procedure that appears to be relatively harmless in the hands of a professional yet you recommend a drug that is outright killing people, has no proof that it does anything and is so new that you don't know the long term affects yet.." they had no response to that.

the last visit they also now recommend Ampyra (Fampyra in Canada?) we are researching the drug still and she has not made up her mind yet. however, we are leaning more towards UCC etc. and physio instead of drugs. we want to try what ever we can before we consider drugs again.

Good response by your wife. I haven't followed this whole cccsvi thing. I think that it was U of Buffalo put me off. Did she do it? Did it make a difference?

we just got married - yes she did it. oh wait, you mean CCSVI surgery. LOL

she had the procedure twice. once in Germany when the whole CCSVI was new.

second one with Dr. S



after the first, she was like a new person - walking wise, fog wise. everything.

only lasted 3 months.

the second used IVUS and showed a bone blocking the left side (thus our looking into UCC) and a 100% blocked ayzgos. she did not get the walking benefit the second time but i noticed other things (as we drove home from Dr. S, she commented about how bright and colorful the shop signs were). her mental ability is much better.

a good example of a difference i can tell you is that since her last procedure, she moved from small town Canada to Toronto. she planned a wedding by herself in the new city. not just any wedding but a wedding to rival Will and Kate. on the wedding day, the venue owner made her cry just before the event started. if this was pre-treatment, this would have triggered a major MS attack or at least would have put her in bed for a week. instead it didn't really bother her at all.

the best example. a couple months after the procedure, she woke up and had 2 full days of 100% MS symptom free. she had gone from SP back to RR and didn't use any drugs to do it. this is still a mystery to me but it gives us hope that things can get better one day.

Good for her, that's great to here. Does she do anything else, like limit her fat intake?

she is dieting to lose weight but not specifically limiting fat.

I go see my GP to get something, like a script for LDN, fill out this form please, I want some blood work done. Stuff like that.

Neuro wise? I believe he 'fired' me when I turned down the generous offer from The Trillium Foundation (taxpayers) to pay for
Extavia. Haven't heard from him in close to 2 years. I miss his condescending arrogance horribly.

Other than that, I have little use for either of them.

_________________
I run a fun little forum site – www.CanadiansTalk.net – check it out. You don't have to be
a Canuck.

What's LDN?

My neuro was Trillium Hospital in Mississauga, was your's? Are we allowed to say names? Four letters, starts with S ends with a.

Okay, I've googled. It looks interesting, since my leg spasms are keeping me up at night.

i go to my doc when i need a requisition for bloodwork. she is great, and i have copies of all my results in my personal files. i go to the neuro when i feel i should get a scan and see how things look on the inside. i don't think i've bothered with the neuro since 2007 though.

ever tried magnesium for spasticity, trisca?

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I went to the gp this morning. I specifically mentioned wnting to know what my magnesium levels are. He, as expected, just fobbed me off to a neuro. I tol him I wasn't interested in seeing a neuro that was only concerned with beta interferons and to find me one that would look at things like magnesium. He's promised to look into it and find me a 'sensible' one. We'll see.

The saturated fat issue was research for years by Dr. Swank and it works. Sounds like your diet is more like the Paleo diet which is even better. In 2000 Jama stated doctors were the 3rd leading cause of death in our country. Do not think you need a doctor for MS unless you want to take their drugs. According to a study done in England the drugs do not work. You seem to have a good idea as to what works now.

http://www.franksherwood.com/tnms.htm

http://www.youtube.com/watch?v=8JF7TcPs ... ure=relmfu

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!