Brief History of My MS Diagnosis
I was diagnosed with MS in 2001 at the age of 26. Unlike most younger MS patients, my first noticeable exacerbation was not numbness, tingling, or vision problems. I woke up one morning unable to move my left side and spent the next 3 months learning to do a lot of things over again (walking, cooking, etc.). I've spent the last several years improving my strength and overall health, and teaching myself to play the violin again.
Because my first exacerbation was so severe, I'm highly motivated to improve my health. If you're reading this because you're newly diagnosed, chances are good that your experience is totally different from mine. I completely changed my diet. Many people aren't willing to do this. You'll quickly find out what your own threshold is.
I'm extremely interested in, and now have a lot of faith in, some forms of alternative medicine. This didn't happen overnight. If you're a doctor, nurse, or married to or the child/parent of one or the other, it may never happen. I hope in the future that traditional Western medicine and alternative therapies will continue to grow closer to each other. No one at the hospital will tell you about this stuff--I was lucky to get an e-mail, through my aunt, from a woman who had "cured" herself with diet and that started me on my way.
First Steps
Things to Remember:
- You are the person who knows the most about you.
- Alternative therapies, diet therapy, etc., are difficult/impossible to test, which is why researchers don't like them. They also don't make any money for the pharmaceutical industry, but that's a whole different topic...
- Everyone's MS is different. Things that help me may not help you. "MS" describes the symptoms of what's happening in your body, not the cause. This is why your neuro [should have] tested you for Lyme disease and B12 deficiency.
- There is no "cure". Your improvement will take a lot of work and it will be frustrating at times.
Leave no stone unturned in your quest for improving your health. I wish I could remember who said this, because I think about it a lot...
Logistics
If you're going to heal, you need to have a support system. Make sure you have someone to talk to, ideally someone who is NOT your spouse. If necessary, join a church or find a psychologist, just so you have someone you can talk to. If your mobility is affected, figure out how you will get to where you need to go.
If you're going to try alternative therapies, find somebody to talk to about it if your family isn't supportive. I'm lucky in that I (a) have a supportive family, and (b) pretty much do whatever I want even if other people think it's weird. :-)
Call your insurance company and ask for a catastrophic case manager. The last thing you need is insurance-related stress.
Get serious about your future in case of disability. Does your company offer disability insurance? If you had to go on Social Security, could you get by? Know all about COBRA. If you don't have a job or are self-employed, get a job if possible--anywhere that has disability insurance. In my case, I took a look at Social Security and realized I needed to buy a house, and couldn't depend on spending the next 30 years paying for it. Hence my move from San Francisco. Figure this out. It's tough to think about it, but you'll feel better knowing you have a plan.
Environment
"Clean up" your home environment. Lose the toxic chemicals, and lose the toxic housemates if necessary. In my case, I ditched the Tilex and the drama queen I had for a roommate. :-) The latter was not easy--try finding a new place to live in San Francisco when you can only walk a block! This is why I said you need a support system.
De-stress your life. This is probably the most important thing. See above, re: roommate... Change jobs if necessary. Surround yourself with positive people.
Resources
- Diet hypothesis & therapy: http://www.direct-ms.org/ Diet was a big issue for me. It's a very slow process (years). I think it's worth it to feel healthy.
- mscured newsgroup. People talk about a lot of stuff on this group, and there's a searchable archive.
- Eva Marsh's book, Dancing with MS. She's an inspiration. Everyone with MS should read this.
- Roy Swank's book, The Multiple Sclerosis Diet Book. Check at your local library. Chapter 2 (the scientific stuff) was the most interesting for me. After you read about his "thick blood" and fats, etc., do some research on adrenal fatigue. If you suspect adrenal exaustion, I know an excellent acupuncturist near San Francisco who fixed me right up.
- If you can't get a personal referral for an acupuncturist, try several. Some acupuncturists are better at necks, some at digestion, etc. Shop around and see if there's one who makes you feel better.
- Look into Network Spinal Analysis. It's a branch of chiropractic that mainly manipulates the meningal layer around the spinal column. It still seems a little bit like witchcraft to me, but it makes me feel great!
- Check out curezone.com if you want to blow your mind a bit.
What I did:
- Stopped eating wheat, dairy, sugar, and saturated fats.
- Did a couple of lemon juice fasts and one liver flush (see curezone.com). Liver flush was OK; coffee enemas work better for some people. I know this sounds weird--it did to me too.
- Started taking supplements (see direct-ms.org or the mscured list for ideas).
- Tried acupuncture & chiropractic (for me, chiro works better; ymmv depending on what your issues are)
What I do now:
- Same diet as above
- Supplements: cod liver oil, evening primrose or borage oil, Co-Q10, milk thistle, colloidal silver. In winter, when it's too darn COLD to eat a salad, I take a green food supplement. For spasticity & stress, magnesium (chelate or citrate). I should take a B vitamin but I don't at the moment.
- gentle strength training. Start slow and don't exhaust yourself. It took me 6 months before I started seeing results. Consistency is the key, not how much you do. Most of my exercises are isometrics done lying on the floor.
- chiropractic or acupucture. Depends on my needs.
