New and needing help - alternative therapies in Los Angeles?

[foxdomer]

Hi everyone. I am here in an act of desperation. My partner has MS. I am the lucky one who does not have it, but I am getting more and more concerned for her, and we need help finding a really good neurologist who supports and encourages alternative/holistic/naturopathic treatments for MS.

She was diagnosed in July 2013, but once we understood what was going on, we realized that she had actually had her onset three years ago. At the time, she just thought it was inflammation issues related to food allergies.

Since her diagnosis, we have had such horrible experiences with the neurologists we've tried. None of them has ever even spent more than 15 minutes with us, to answer our questions, calm her fears, nor to even explain the MRI. The docs have simply pointed out the lesions and said it was most definitely MS, and then pushed drugs on her. Very little discussion about MS, and no discussion about the location, size, or number or lesions. No discussion about how advanced it is (can that be determined another way than by observing symptoms?). She had two botched spinal taps, which was a terrifying experience. And the second neurologist we saw basically insulted us when we had questions about diet and alternative therapies.

There has only been problem after problem with her applying for disability. She's been denied, and had extreme difficulty finding a lawyer for her appeal. We were informed that basically everyone gets denied the first time (I guess maybe the government's way of weeding out those less in need of or less serious about getting disability?), and that you must have a lawyer for your appeal or they won't take you seriously. We don't even know if she should apply for temporary state disability or for the federal SSDI. She is still working full-time even though she absolutely should not be! (And I unfortunately do not make enough money to support us both.) Her fatigue level is depressing, and she has a numb hand, consistent electrical shocks through her arm and leg, some visual problems, and sometimes more serious issues with her leg and foot.

We have done so much research and have found SO MUCH inspiring information about healing, and even reversing, MS with alternative diets and healing modalities beyond the pharmaceutical drugs. However, she really needs more guidance. For this, we need to find a new neurologist. We live in southern California, somewhat near LA.

If anyone has read this far and feels so inclined to help, this is what we're looking for:

-suggestions or recommendations of doctors/neurologists in the Los Angeles area who also practice or at least support and can refer us to naturopathic and alternative MS treatments.

-guidance as to how to research more neurologists or MS specialists in our area.

-any support you may be able to offer.

Thank you so very much, and I appreciate the existence of this forum!

[kimik1]

Hi Foxdomer,

My name is Kim, and I'm the partner with MS.

Unfortunately, I don't live in your area, and with my western medicine background as a pediatric and neonatal intensive care nurse, have done research into alternative and naturopathic remedies for MS only to discover there is very little research supporting dietary "cures" or naturopathic therapies as efficacious. There are lots of people out there claiming dietary success; the support for these is usually anecdotal, unfortunately. The National MS Society (who, admittedly, receives funds for support of their mission from big pharma) recommends at this time, based on all accumulated research, following the American Heart Association's diet.

However, you can call the National MS Society's Navigators to help you find MS Specialists in your area. Call 1(800)FIGHTMS, and option 1 is to the MS Navigators; they can help you find people in your area specializing in MS, as well as connect you with support groups in your area (which you may or may not find appealing). http://www.nationalmssociety.org/ is the Society's website; there's TONS of information there (though admittedly not likely as much about alternative therapies and diets) to help you. They have a very good series called Knowledge is Power for newly diagnosed people that is an 8 week series of either mailings to your home or electronic mail that touches on all kinds of issues regarding MS; I believe the week about medications talks briefly about alternative and complimentary therapies, but I'm not sure. http://www.nationalmssociety.org/Res...ledge-is-Power
that is the link to sign up to receive the series.

I wish you luck as you go. This can be a frightening journey to say the least. I also was denied SSDI on my first application (and I am being represented by Allsup, they claim a 52% success rate on initial filing and an 88% success rate on appeal). Fortunately, my partner's income combined with my long term disability policy through my former job are sustaining us, though tightly reined in, while we wait for hopeful approval of SSDI (it can take, through my area office, 14-18 months for the appeal to be heard.. nice...).

I wish you the best of luck. Feel free to ask questions here. The chats are great, too. Wednesday night is Newly Diagnosed chat at 8pm Eastern time. Each night has a topical chat or two, but open chat is available 24 hours a day, 7 days a week.

Good luck to you. I'll watch to see if you respond and have any questions I can answer.

Take care,
Kim (KimOp, Kimik1)

[Zuzus11z]

Hi Foxdomer -

Annette Langer Gould is an MS specialist at Kaiser Sunset. She is my doc and I like her. And while her first suggestions have been for the big pharma medicines (none of which are really applicable to me - PPMS) she has been equally supportive of me striking out on my own and trying alternative approaches (LDN, acupuncture, massage, supplements and diet modification, etc.). There is also a clinic in Newport Beach with an MS specialist...don't recall his name but he shouldn't be difficult to find....that Google machine is just crazy that way.

And kimik1 is right: you will find loads of claims out there with respect to diet an alternative therapies....like the Wahl's Protocol for example. Even LDN. But that's just the rub ain't it: MS is unique to each unique person it afflicts. There is no one answer or approach. I think of it like guerrilla warfare....you battle it with whatever you've got at your disposal.

I wish you the best of luck.

Sean

[kelm10]

on my own

I have researched all the items on my own and my Neurologist supports what I try.

I research with great depth and step towards things that have been tried and true in the complimentary (i choose complimentary rather then alternative) community. The www.nmss.org website also lists them.

I utilize my pharmacist to make sure that any herbs that I try doesn't interfere with any of my other meds that I am on.

You have to figure out what works for you.

[foxdomer]

Hey Kim, Sean, and kelm10 - thanks for the quick replies! And also for the care and attentiveness involved in answering. I have to admit, just having the support and contact with others about this helps somewhat.

I guess what you're all saying is pretty much what we've observed already - that there is no single approach that will work for everyone, and that the complementary healing treatments are not yet proven in any significant way.

But basically we are still just looking for help in locating either an MS specialist familiar with the alternative/naturopathic treatments, or even just a holistic healer who has experience with MS patients.

My partner has tried everything. She's had a rolfer work on her, sound healing, nascent iodine, b-12, vit D, herbal tinctures, diatomaceous earth, exercise, pure hemp oil, dietary changes and restrictions (Wahls' diet is difficult because she is mostly vegan), cleanses, other energy medicine, consulting the i-ching, you name it! Ha! Anything but the drugs. She is adamant about not taking drugs... so here we are.

Well, we'll just continue the search and continue the experimentation. Thanks for the support!

Fox

sdi is from your doctor with CA state approval. no doctor, no SDI. SSDI is federal. no doctor, no supporting criteria, no ssdi. Your partner working means, no on either.

Start reading....

[Pipes123]

Dr. Rhonda Voskuhl is running the trial of estriol in ms. It's a hormone, not a drug and the trial is based on the fact that there are statistically fewer relapses during pregnancy. She is an expert ms neurologist. You might try seeing her.

[Temagami]

Just guessing but maybe the reaction you´ve gotten from neurologists is due to her refusal to try the DMDs. I´m not saying that is good or bad- each person choses their own course. From a neuro´s point of view, they might see her as lucky to live in a time when there are DMDs to chose from and they themselves would avail themselves of the pharmaceutical intervention. Neuro´s have seen patients who do and do not take meds over a long period of time. Some neuros were practicing when no meds were offered. Also, neuros offer what they have in their "arsenal" - drugs.

PTs offer PT, herbalists offer herbs, dietitians offer diets...

I would read the sites of Dr. Whals and Dr. George Jelinek. I give these guys a lot of cred b/c they have MS and are medical doctors. They have access to all the journal articles and are heavily invested in finding "the way." Jelinek talks of letting go of dis-ease. He is very interested in meditation´s beneficial effects. Whals is looking at nutrition at the cellular level - she seems to have latched onto something that is becoming less fringe and more mainstream.

If your partner refuses the DMDs, is she willing to alter her diet as an ongoing change, not a fad? Are you willing to join in that change?

Meditation, yoga, mindfulness, hipotherapy, hydrotherapy all help with MS symptoms. There is a stress-symptom correlation to some degree. The Rocky Mountain MS Center has lots of complementary therapy links.

I have found that eliminating milk products of any kind (it´s the protein), gluten, sugar and all soy except for soy lecithin have dramatically decreased the paresthesia. Even a tiny bit is enough to ramp up the buzzes, tingles and pops.

Caretakers also need to do self-care- I imagine that meditation and yoga would be very helpful.

If there were a magic bullet, Ann Romney would have it and she obviously does not. Seems that MS research is still at the plugging the dike stage. You can slow it down a lot. You can regain function of body parts that were affected by lesions- that can heal to some degree.

I would focus on diet- food as medicine- check out functional nutrition/medicine and the Weston Price institute and on the decrease of stress with meditation (Deepak Chopra - guided meditations) and the yoga.

You sound like a supportive listener and sometimes that alone is as helpful as any other intervention.

[Temagami]

Also- probiotics- read Trust Your Gut

VitaminD3- get her level tested.

read Joseph Mercola- eat like a cave man- MS alpha lipoic acid- you have to google- no urls allowed.

[lilbitOcrazy]

Dr. McDougall?

Not sure if you have looked into Dr. McDougall he was featured in the documentary forks over knives. He recommends a plant based low fat vegan diet for MS. He has a program that is in Santa Rosa CA. And he meets with an educates you. If your able to afford one of his advanced weekend studies it might be a good education. He has a lot on his website and YouTube if you need more info. Hope this is helpful.