This Is MS Multiple Sclerosis Community: Knowledge & Support

First, thank you all for your very warm and supportive responses to my introductory post in September. I haven't been on this site in two months, as I've been working very long hours on a TV show and under a lot of pressure (stress and exhaustion -- not so good for fighting this monster, eh?). I am moved by how kind the people here are.

The Neuro I've seen twice at UCLA, Dr. Norman Namerow, is retiring in January or February, and I am looking for a referral to another Neurologist in the Los Angeles area. I would very much appreciate any recommendations the people here might have.

The traits I'm looking for in a neurologist are:

•A good listener and communicator who, if he/she doesn't remember the details of my case, is capable of reviewing my file (preferably before the meeting! or is that just asking too much?) and having my whole individual situation in mind when consulting and making recommendations. Understanding and speaking English well is a must -- I'm no xenophobe, but clear, precise, and nuanced communication is critical.

•Willing to approach my case with a wide variety of treatments. I appear to have PPMS with relatively mild symptoms (R. side weakness: I feel very awkward when running and have 1/2 the strength in my R leg, but I am still taking dance classes). Any Neuro who wants me to start taking Copaxone or CRABs will have to do a lot to persuade me, for as far as I know, none of these drugs have been shown to be effective in PPMS. I would love to find someone who is interested in trying alternative treatments, whether it's antibiotics, Lipitor, or something else. I certainly don't want someone who's hostile to or ignorant of the Swank Diet and such. I'd like a doctor who is knowledgeable about types of exercise that might help me keep strength and flexibility.

•A doctor who is interested in and up to date on the latest findings and clinical trials.

I may not be able to find the above-described Doctor of My Dreams, but I thought it would be best to put it out there and ask this terrific community for advice.

At least three separate family friends, some of them MDs, have recommended Dr. Barbara Giesser at UCLA, and I'm trying to get an appointment with her. She sees patients on Tuesdays and Thursdays only, I was told, leaving the rest of her week open for research. I understand that she sees people and sends them back to their neurologists with a treatment recommendation (apparently she has quite the reputation!). Of course, with Dr. Namerow retiring, I don't have a neuro to be sent off to, so I still need to be matched up with someone whose focus and style are compatible with my needs.

I will be happy to report back here on my experiences at UCLA as they transpire.

Does anyone have any thoughts or recommendations for my next (and hopefully long-term) neurologist?

Thanks very much.

I remain,

Longing4Cheese
(saturated fats well below 13g/day since August '07)(':?')

Longing4Cheese

Well, I must say that I don’t know any neuros in the LA area but I’d agree with the recommendations you’ve already received to go with Giesser. She seems like an excellent choice to me since it appears she’s involved in the research on hormones and MS at UCLA, including the pilot trial of testosterone.

I’m definitely biased towards the view that all people with MS should have normal hormone levels (cortisol, DHEA, estrogen, progesterone, testosterone) and it’s just possible given her interests in hormones that she might be willing to test your hormone levels and be certain yours are all in the normal range and prescribe accordingly if they're not.

Just to whet your appetite (for normal hormone levels, sorry there’s no cheese here) here’s a link to a fairly technical article: Recent Developments in the Significance and Therapeutic Relevance of Neuroactive Steroids

Some relatively understandable quotes from the article:




This abstract helps explain why reducing HPA axis activation might be important to people with MS. The role of stress-response systems for the pathogenesis and progression of MS

Now back to a final quote from the article:

Maybe Giesser will share the author’s enthusiasm for normal levels of “neuroactive steroids”—obviously I do. Interesting that the article doesn't mention estrogen--although low levels of estradiol were associated with disability levels in a small study of men with MS.

All the best in finding a neuro who will work for you.

Sharon

Wow, thanks Sharon.

I haven't studied hormones at all (not since AP Biology in high school!) but I will read this article carefully when I'm not at work (!).

I didn't know Giesser's interest was in hormones. I will dig up everything I can about her research before meeting with her, if I have the opportunity.

Thank you again.

Monsieur qui manque du fromage

UCLA is one of the leaders in the research on MS and hormones. No biology here either since high school so for the most part that article is way out of my league.

It occurred to me that if you haven't already done so you might also be interested in contacting Nancy Davis for info on physicians or practitioners in the LA area who are willing to treat MS with alternative approaches. I read her book, Lean on Me, and she was not on any CRABS (at least at that time) and seemed to wholeheartedly endorse exploring alternatives. She initiated the Center without Walls and more info about that can be found in the latest ERASE MS newsletter.

Hormones seem to exhibit neuroprotective properties that might be applicable to people with MS so on that note here's another full access article (focused on DHEA and progesterone) that might be of interest too. Endogenous neuroprotective factors: neurosteroids

Happy reading and do let us know how things go.

Sharon

Hi cheese...
Sounds like you're set at UCLA. (We looked into androgel supplement for my husband, but his testosterone was already high, not recommended.) You might want to check out Ann Boroch. She has an office in Studio City, and is a naturopath. We have her book, Healing Multiple Sclerosis, and have utilized many of the principals in it, especially diet and supplements- although we haven't had a personal consult.

You're lucky your show is still going on with the WGA strike. Hubby's got a couple episodes left to post on his, and then it will be a quiet holiday. Not sure how the "talks" went today.

Here's Ann's site....
http://www.annboroch.com/
later,
ac

Sharon, you pointed me toward Nancy Davis back in November of '07, and I guess I didn't look into it. Now through responses to another post of mine, I have finally gone to her website and looked at the amazing group of neurologists whom she supports -- really, some of the top names in the field in terms of research -- and I am so glad to have found out about her foundation. I came back to this site and Searched for "Nancy Davis," and, among many others, this thread came up, and I saw that you recommended her. I will humbly go back and look at all the responses to my posts and make sure I look up every lead that people have given me. I thought I had.

Anyway, I'm excited that there's someone like Davis with her awesome resources who is highly motivated to slay the MonSter. I'm also pleased to find that she is in favor of alternative and complimentary therapies (I don't know her story, just vague hints so far), because, as someone with PPMS, I don't have so many pharmaceutical choices yet.

I will be going to the MS Roundtable tomorrow morning at the Hyatt hotel in Century City (Los Angeles). I'm looking up the backgrounds of all the neuros named with the research centers -- though I'm not sure if they themselves will be present, or other representatives. (Last year's speaker lineup didn't include the principals, except for Norman Kachuk from USC, I think; maybe Leslie P. Weiner showed up, too.)

So, thank you Sharon, and others who have given me useful leads. I'm SO looking forward to this conference tomorrow!

Also, I've been frustrated all day after a party useful, partly exasperating conversation with a high-level administrator from the National Multiple Sclerosis Society - Southern California Chapter in which I ended up being sucked into yet another argument about diet being effective (arguing with a non-doctor who was giving me health advice). "There's absolutely no evidence," blah blah blah. Ignorant. But the real question is, why do I keep letting conversations "go there?" Answer: Because I've been hoping against hope that, someday, I'll meet someone in the 'MS establishment' who doesn't hear "Swank" or "saturated fats" and think that he/she heard "I get magic voodoo oil from the UFOs that live in my head."

If Dennis Bourdette, M.D. happens to be at this Roundtable tomorrow morning, I hope to enjoy a novelty: a discussion with a neurologist in which diet can take a respected position. At least I would expect as much, since Dr. Bourdette holds an endowed chair named after Dr. Roy Swank!

From my quick reading tonight, Dr. Bourdette and his teams are doing some very interesting studies into mitochondria and neuronal damage and a bunch of other interesting stuff.

There really is a big leap forward coming in terms of our understanding of MS, and the resulting new treatments. I have to give her credit for this: Dr. Barbara Giesser did say that when I met with her in February, and, from what I see in the works, she's right.

OK, must get sleep so I can be sharp tomorrow.

Signed,

No Cheese on My Taco Tonight -- Flax Seed Oil Instead

Hey Cheese-
So glad you went to the round table....
We had a busy weekend with kid's concert, other stuff. Couldn't go, but went to the website. Nancy Davis is one rocking woman. She's assembled an amazing group-
I eagerly await your notes.

We have a new doc, an endocrinologist who studied with Andrew Weill, and he completely believes in diet, supplements and alternatives. He's not a neuro ('nough said) We meet next week to go over hormone and adrenal test results. He believes this is a huge part of the pic for MSers. I'm so happy to have found a doc who steps back and looks at the whole picture. Here's another one of his mentors- Dr. David Perlmutter, who calls himself "The Renegade Neurologist." Ya gotta love that!

http://www.perlhealth.com/

I hope you learn alot, get some answers, and converse with doctors who ignore your tinfoil hat and UFO transmissions!

Bring on the notes...
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hi, Cheerleader. I will be happy to attempt a recap of the MS Roundtable later; right now I have to run around and do some errands. The short version is that the lineup included lots of accomplished neurologist-researchers, but the one I was most looking forward to speaking with, Dr. Dennis Bourdette of Oregon Health Sciences University (where he holds, among other things, a chair named for Dr. Swank) was not in attendance. Most of the remaining docs, the Weiners (Howard Weiner of Harvard/Brigham & Women's Hospital in Boston, and Leslie P. Weiner of USC), as well as Dr Waxman from Yale, etc. are of the strictly pharmaceutical bent. As we know, the consensus is that there are no drugs for PPMS, though there's interest in drugs that can help protect neurons in all MSers.

There was lots of optimistic talk about emerging technologies and upcoming applications (drugs), but, when a few people asked about diet in general or Omega-3s in particular, they were uninformed. Dr. Leslie P. Weiner was asked about Omega 3s, and he said he didn't know much, and everything he knows he got from Dr. Bourdette, who was not present as I've said.

All in all, I didn't learn much, but I got the impression that for the great majority the session was full of new information. It's frustrating to me that the discussion was at such an introductory level, but, then, for me with PPMS, any discussion of drugs would be very specialized and better done in a one on one discussion, since most of the people in the room would a) be uninterested because it's for PPMS, and b) would probably not follow it.

I took notes on a lot of the Q & A, and I can post them later, though I am not sure how helpful it will be.

Overall, I'm glad I went, but it didn't help me much. My next step is to try to contact Dr. Bourdette and, if I determine that he is the right person to ask, ask him if he can refer me to someone in L.A.

A la prochaine...

Sans-Fromage

Big drag, Cheese. Thanks for going for us all. Sorry it was an RR Pharma party. I'm really surprised, since Nancy Davis isn't on any CRABS. If you have time to transcribe your notes, I'm sure it will be appreciated.

I'm going to re-iterate Sharon's insight. Look for a doc who sees the interconnection between diet, lifestyle and hormones. This may not be your "dream neuro". You are on the right path with Swank and supplements. An endocrinoligist could look into other issues for you. I've got a good one in the Conejo Valley. PM me, if you want-

best,
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS