ANA Discussion Forum
AN Community => AN Community => Topic started by: krbonner on July 16, 2007, 07:36:00 am
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What a great (though jam-packed) weekend! Lots of great information, sharing, meeting old friends, and making new ones. I'm so glad I went. It's really a unique experience - a medical conference devoted to patient-patient and patient-doctor interaction. (Though it was still interesting to note how the doctors' biases and conflicting opinions still came through loud-and-clear.)
I didn't take any pictures, but hopefully others will post some.
Thank you to all for making the weekend so enjoyable! Hopefully we can all make it to Chicago for the 2009 Symposium.
Katie
P.S. Capt Deb and BP - next time we take a cab back so the Market doesn't close on us! :P
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man -- I'm sorry I did not go .. I had plans to go, but my fishing trip was changed to last week ... (and nothing over rides fishing ;) )
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My notes are such chicken scratch they're not worth scanning! ;)
I came away with this: this would be a great thing to go to if you were pre-surgery as a whole. I really liked the talk on genetics and the recap of the International in Barcelona. Things of interesting note from the doctors presentations were, IMO, that 18 mm is kind of the "threshold" in that once you grow past that point you're at higher risk for facial/hearing issues, the "new" ratio is 2/100,000, the average age is 62, that some type of radiation is probably a factor in mutating the particular chromosome to make this occur (8-10% higher incidence of occurrance in Hiroshima/Nagasaki survivors), that we will probably continue to see an increased incidence of AN as technology grows, that they are looking more into genetics of how AN's come about so that maybe someday there can be a pill that we can take to inhibit the growth, and that there are in total three types of NF2's. Lots more, but I can expound later. Just hitting the high points that stuck with me. And yes, the debate is still wild and interesting to watch as it occurs between docs who radiate v. docs who do microsurgery.
And for those of you interested, the next one is in 2009 in Chicago with Dr. Wiet hosting!
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Do you think if we get the transcript it will have the "spinal cow cord" in it??? LOL Maybe we should order one just in case we missed anything else good!!! The symposium was very interesting and educational, as well as alot of fun. I was glad to meet everyone I met from the forum. It was nice being able to put a person behind the names on the computer screen. It was also nice to meet Transear Rick. It's amazing when I put on the baha headband how much more I could hear it was actually like overload. I really did learn so much more and I will definitely be going to Jeff's headache clinic very soon as well. I hope everyone made it home safely.
~Karen
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Hi Static!!!!! It was great to meet you finally!!! Yes, the Transear and BAHA were very interesting. Rick was very nice, and Cheryl I told him hello from you and that you weren't able to come. I would like some more time to experiment, but even the BAHA guy noticed that I read lips and therefore feels like I've adapted well....it has been a good 10 years or so, I bet, that I haven't heard well. I'm sure it's much different for someone with sudden hearing loss.
I need to Google "spinal cow cord" just to see what happens. :D That was soooooooo funny!!!!!! And the MRI that looked like a pressed ham with a dingleberry! We're so bad, but I think that's how we all adapted so well.....what can you do but laugh?
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I made it home last night too just fine. It was a good trip but am glad to be back to the country. It was super to meet everyone and am thinking too late that there was some people that I remember said were coming and that I don't remember meeting. How did everyones group pic turn out? I haven't downloaded mine yet.
The talks were good. Sat, the talks ran over time wise so the question and answer session with the group of doctors was not done after the case history presentation. I was disappointed in that. I know people may have been able to get some questions answered in the individual sessions but have felt this was a helpful time. Some of the earlier doctors talks got a bit too in depth. I felt like I was in a nursing cont ed class. My primary interest was the NF2 topics. I am not sure if I knew this before that NF2 tumors are different from regular AN's in that the nerve fibers run through the actual tumor and that causes more problem with treatment. A regular AN just sits on the tumor and the damage it causes is from the pressure it causes. The usual methods of treatment don't work as well.
I was glad I did come! Cheryl R
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Wow kathleen you took good notes.--my post is long but anyone that knows me knows I have lots to say LOL
I know I got the spinal cow one written down somewhere LOL That was funny as well as some of his made up words. I too wondered if the typos would be in the transcript...great reading if they are ;D
I can't wait to dig into the book Dancing through life with Guts, Grace and Gusto. Sandra was incredible to talk to. I would expect Allie to be the same. Anyone who's interested the book can be perused and orderd on Amazon.com
Let's see my notes:
• age of onset between 45-64 years old
• arises from the vestibular nerve
• more common in women
• twice as common in whites vs blacks (did they give a reason for this? or etiology is unknown?)
• increasing over time they do not think it is 1 in 100,000 but 2 in 100,000
not sure if this is just in referring to NF2 or An's as a whole
• originates from one abnormal cell
• genetic defect
• chromosome 22 is responsible for NF2
• NF2 produces merlin (merlin is a protein)
I learned that B Vitamins can aid nerve re-growth and t hose with facial numbness might want to try it. Around the 24 month, mark if the nerves have not re-grown it is highly unlikely that they will.
Facial neuralgia can be sharp and dull pains. I was under the impression just sharp. I suffer from dull achy pains in my face and was told by Dr. Wilcox that it is facial neuralgia. There are medications that might help.
There are no studies done or being done on AN’s and post surgical headaches.
There are no studies on the cognitive issues and AN that have come out as of yet according to Dr. Kunkel.
Wellbutrin is not for patients who have had AN’s due to the central nervous system.
Depression is a common issue with An’s and medication will help. Mania and Bipolor are connected in an unclear manner. I know I experienced this about 6 mos after surgery.
There was a german study done that put two cell phones next to an egg and supposedly after 30 mins the egg was hardboiled. They have not been able to confirm this data. The slide was funny.
Honestly there was no much to learn, see, do, and experience that anyone who is post, or pre treatment should consider attending in Chicago in 2009. I missed the one in Orlando by about a week. I was not given my diagnosis at that point. I see how it could be both beneficial and overwhelming to those who are wait and watch or trying to decide on treatment. From the feedback I heard, having the posties to talk to helped the ww and pre patience’s understand more of what their options are and what to expect after treatment.
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Addendum to Battys:
more prevalent in whites as with other disorders, blacks have (as a whole) less access to medical care, so by the time they are diagnosed the mortality rate is up to 8% with them. Chromosome 22 contains the vestibular schwannoma supressor protien, called Merlin, and we all have it, not just NF2ers. It's when Merlin gets damaged, through recessiveness and/or a radiation event, some where in time, that causes just the right circumstances for suppression to not occur in one schwann cell which will then multiply. This is part of the reason for the broad spectrum of age differences, but the onset is generally older because that by then, somewhere along the line, we have a higher chance of having that "event" that starts this growing.
I now think that somewhere along the line, it's that we all suffer from "spinal cow cord"ism! ;)
Just FYI, the "forum" group was Captain Deb, Batty, Katie Bonner, Static, Cheryl R, redgrl, and myself, and staypoz made herself known....never did see Flyersfan! Anyone else there that avoided us like the plague? :D
Also, a shout out hello to all of you that I got to meet that are not on or just lurking on the forum! It was great to meet you all!
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Also Arushi and Taylor and mom Kathy.
Cheryl R
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WOW I didn't think anyone would notice. The reason was I couldn't decide which jersey to wear?? (Upshaw, Briere, Gagne)??
Then I couldn't find shoes to match. I will have to make it up in Chicago then! I do appreciate the mention! One thing that keeps entering my mind however is starting a local brunch somewhere in Philly maybe once every month or two. Would love to hear from Karen about this. Karen you out there?
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OK, did I fall asleep in my chair at some point?!?! What's with the spinal cow cord? ???
Katie
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Flyersfan,
No one would recognize my Jersey names anymore (Clarke, Parent, Dornhoefer, MacLeish) ;D. Of course, that was when they were winning Stanley cups and not finishing last in the league :o. What's up with that
Mark
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Oh good lord, how could I have missed Taylor and her mom....actually I knew someone was missing but my AN brain couldn't put a fix on it....it fell into that bottomless pit that I now have! :D Didn't get to meet Arushi! Darn!
The spinal cow cord was the translator's take on transcribing "spinal cord". There were other funnies as well....it seemed the more the day wore on, the more tired the transcriber got and it got really funny!
I had to go to bed as soon as I got home from work yesterday, I'm really worn out, will try to upload the photo tonight!
Yes, we missed you Flyersfan....we saw the Flyers shirts in the gift shop, so we were looking for something like that!!!! Karen is a great gal and I bet a Philly area meet would be fun!!!! Too bad I'm near Seattle!
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Hmm .. I dont think I'll to the Chicago one .., maybe we could have one back east some time? New York or Boston?
Might I all suggest we could raise money for ANA by selling T-shirts with our forum names on them for next time? ;D
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Hi Michelle: Do you recollect if they mentioned Vit. B6 in particular for nerve regeneration? I heard that somewhere, but that you need to take another medication along with it (what I don't know) or the Vit. B6 can cause more harm than good.
Someone on the forum mentioned Vit. B12 dots which I AM taking, but am curious re: Vit. B6. Thanks, Nancy
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Flyersfan,
No one would recognize my Jersey names anymore (Clarke, Parent, Dornhoefer, MacLeish) ;D. Of course, that was when they were winning Stanley cups and not finishing last in the league :o. What's up with that
Mark
Last place wasn't fun but it was a transitional year. Hopefully we have the speed we need now! I miss those days of the Broad Street Bullies. Broad Street Was Crazy! Even when I go to the games today I still see guys sporting their Clarke, Barber and Parent jerseys.The original too not the fake throwbacks. I started watching hockey real young because my father would talk Canadian trying to make me laugh which always worked.
He didn't know (Phillies Fan)!
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Hi Michelle: Do you recollect if they mentioned Vit. B6 in particular for nerve regeneration? I heard that somewhere, but that you need to take another medication along with it (what I don't know) or the Vit. B6 can cause more harm than good.
Someone on the forum mentioned Vit. B12 dots which I AM taking, but am curious re: Vit. B6. Thanks, Nancy
B VITAMINS..
Many of the B vitamins are essential for proper nervous system functioning. Addition of a basic B-complex vitamin to the daily routine may be a good idea during recovery. Some B's that may be particularly beneficial are:
B1 - enhances circulation (circulation is reduced in muscles that are not active) and may retard muscle atrophy.
B6 - assists in the creation of amino acids needed in the creation of new cells.
B12 - when taken as part of a "B-complex" vitamin, may help reduce inflammations and strengthen the immune system. Methylcobalamin is a form of B12 that is not a component of basic B-complex vitamins, and is important to nerve growth and maintenance.
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I now have all my notes scanned and in a PDF file. Can someone point me to a place where it can be uploaded and hosted??
Katie
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Ah, those were the days with the Broad Street Bullies ;). I still remember sitting with my dad the day they beat Boston 1-0 for the Stanley Cup. I believe it was also that year of the next that they beat the USSR Army team and Van Impe decked Mihailov with a great check.
Apologies to everyone else as I know only Flyersfan can appreciate those moments, but I don't usually play in some of the other "chatty" posts, so I'll claim a "pass" here ;)
Now back to your regularly scheduled AN discussion
Mark
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Steve, We could do a Philly brunch thing if you wanted to, but I think there might already be a Philadelphia area group that meets somewhere in Reading or something. I was looking for you, but didn't see any orange and black and figured you just abandoned us and left me to represent the City on my own. Now that everyone met me, I'm not sure they're going to want to come back! LOL I also remember the days of the Broad Street Bullies. I went to the Flyers parade the first year they won the Stanley cup and saw the streakers all over the place! I can remember chanting. bernie, bernie, bernie, among other things! Now that was a team Philadelphia could be proud of. Getting back to the symposium, I really had a good time meeting people from the forum. Omg, that translator, we were cracking up! Even though I had a sinus infection and felt horrible, I had a great time. Pictures? Only use the one of me behind the palm tree ;)
~Karen
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NancyAnn I was told Vitamin B complex. Nothing specific just b vitamins.
Today I feel like i have a cow on my spinal cord I'm so tried of sitting in my chair trying to get my homework caught up from my grand weekend. Was definitely worth it!
I saw tigermaiden too!
I think in Chicago we need to represent and wear forum shirts so we can easily identify us in the crowd. Of course I did wear my pink pirate tshirt friday so you shouldn't have been able to miss me LOL
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Sorry...
I see my mistake, Mark. Take care. NF-2er
Ah, those were the days with the Broad Street Bullies ;). I still remember sitting with my dad the day they beat Boston 1-0 for the Stanley Cup. I believe it was also that year of the next that they beat the USSR Army team and Van Impe decked Mihailov with a great check.
Apologies to everyone else as I know only Flyersfan can appreciate those moments, but I don't usually play in some of the other "chatty" posts, so I'll claim a "pass" here ;)
Now back to your regularly scheduled AN discussion
Mark
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Thanks Michelle & FlyersFan - well, I'm on the B12, & saying my prayers.... Nancy
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Interesting to see you back, Russ......
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I didn't realize that was Russ reincarnated as NF-2R. Welcome Back to the board
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Hi all,
It was wonderful to meet everyone. You made us feel so welcome. Many people came up to us with words of encouragement and advice. I thank you. It was well worth the cost.
I learned things I didn't know, especially from Jackie Diels, the facial therapist. Hopefully, Taylor's muscle graft scheduled for November will take, and we'll plan a road trip to Wisconsin to see her next spring.
I was hoping more of the young ones would be there for Taylor to connect with in person, but the only one close in age we met was Supermaren. I think she said she's 24. (Taylor is 19) She was very nice and seems to be doing well, despite the facial paralysis. She also had a cute boyfriend by her side who has stuck with her through it all. He is special, Maren, and so are you. Proof that having a positive attitude means a lot. I hope you inspired Taylor to find that positive attitude.
Many thanks to the rest of the forum gang. You are the best. Hope to see you all in Chicago in '09.
Kathy
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I see there is going to be a Symposium in Chicago. Are there exact dates set yet?
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AAAAAAAAARRRRRRRRRRRRRRRRRRR!!!!!!!!!!!!!!!! Mateys!!!!
Yes the Symposium was fantastic and it was so special to meet in person all the folks I've been sailing through life with for these many months. I even got to kiss my dear surgeon Dr Rick Friedman on the cheek with me bright red lipstick on. He said the wife wasn't there so he wasn't going to wipe it off.
Even though I missed my two favorite workshops due to an all-night brainwreck, I for sure wasn't going to miss the grub on Sunday. I really can't comlain at all about the way they fed us--it was all delicious.
Seems our "little pirate club" is going stronger than ever--I passed out 30 uniforms during the weekend--"pirates lose body parts all the time and just sail right on." Everyone got a real kick out of that. We need to come up with a forum flag that can sit right on the table--definitely T-shirts as well. I missed seeing flyersfan and tigermaiden.
To everyone I met--posters, non-posters, and lurkers alike--I felt like I was at a family reunion--the love , compassion and companionship bonds there were unbelievably strong.
I see the Headache Wizard on Tuesday and will try to transmit what I learned at the headache workshop (I missed the second one) and get him to try me on Topamax, which Dr Silberstein said he had the best success rate with. Will probably cost an arm and a leg since I lost my prescription drug coverage for the year, but maybe it will allow me to put in a few more hours in my studio.
Big hug and kisses to all of you and remember to watch out for Sea Monsters!
Capt Db 8)
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I've got the pdf of my Symposium notes uploaded. It's a large file, so be patient for the download.
http://home.comcast.net/~krbonner/AN_Symposium_Notes_krbonner.pdf (http://home.comcast.net/~krbonner/AN_Symposium_Notes_krbonner.pdf)
Katie
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Wonderful information katie, thank you for posting it
Mark
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Hi Katie!!! I'm wondering if this scenario was discussed: What is the best radiation treatment for prior surgical patients w/re-growth to protect already weakened facial nerve yet effectively stop the growth??? Wondered if anything like that was discussed... (PS--so sorry I won't see you again in Aug for our brunch!! Well, next time after that for sure I hope!!! Regards, Mary from MA
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MLB I don't recall anything specifically but can honestly say I think I missed that one. Was playing with the Baha test band.
NF your comment makes no sense to mark.
Flyersfan how come you did not identify yourself? Geesh did you miss me in my pirate gear? ;D
The last two symposiums have been in june and july...cheryl r do you know if this a typcial time set?
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Capt Deb,
I've been on Topomax for six months and it has made a difference for me. I take 50mg in the am and 50 mg before I go to bed. They don't help a headache once you have it but they do help prevent them. I have gone from five to six "trainwrecks" a week to one or two. Tell your doctor to give you the information to get the meds free or reduced because you have used up your drug coverage. McNeil is the manufacturer and the cost for 30 100mg is about $160.00. My pharmacy gives me 60 50's for my copay of $50. It is considered a tier 3 level drug. I hope this help.
Brendalu
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Hi Katie!!! I'm wondering if this scenario was discussed: What is the best radiation treatment for prior surgical patients w/re-growth to protect already weakened facial nerve yet effectively stop the growth??? Wondered if anything like that was discussed... (PS--so sorry I won't see you again in Aug for our brunch!! Well, next time after that for sure I hope!!! Regards, Mary from MA
I don't remember regrowth really being addressed at all, which is unfortunate. You should send email to ANA to propose that as a seminar topic in 2009 to help other patients.
Katie
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There was a session on recurrent tumors on Sun which I was scheduled to go but I changed my mind and went to the emotional impact of AN instead. There might have been some info in that session. I would have to look up which dr was doing that session.
In regards to the question about past symposium dates. The last 3 have been in June toward the last of the month. I was at the last 2 and read about the 2001 one as I had that first fateful MRI on July 6th,2001! Cheryl R
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katie,
Many thanks for your symposium notes. I wasn't able to go.
Regards,
Rob
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MLB I don't recall anything specifically but can honestly say I think I missed that one. Was playing with the Baha test band.
So, battyprincess, what was your impression of the Baha test band? I've yet to get an opportunity to try it. Feedback, please . . .
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Capt Deb,
I've been on Topomax for six months and it has made a difference for me. I take 50mg in the am and 50 mg before I go to bed. They don't help a headache once you have it but they do help prevent them. I have gone from five to six "trainwrecks" a week to one or two. Tell your doctor to give you the information to get the meds free or reduced because you have used up your drug coverage. McNeil is the manufacturer and the cost for 30 100mg is about $160.00. My pharmacy gives me 60 50's for my copay of $50. It is considered a tier 3 level drug. I hope this help.
Brendalu
Brendalu,
I'm Curious to know how long it took you to get used to the topomax. My doc prescribed it to me for the brainwrecks and after 4-5 days I stopped cuz it was making me feel so strange. I hear it has a good side effect of weight loss though.
Sorry I missed the symposium, would have loved to meet everyone.
patti UT
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For what it's worth, I'm also on topomax and have been on it for about 9 months now and it really didn't take much for me to get used to at all. I was started at a very low dose and gradually increased in small increments. I currently take 150 mg 2x daily but still have an occasional major headache and small daily headaches, especially when I have a sinus infection or during a major weather change, but nothing like they were when I wasn't on it. Unfortunately I didn't get the side effect of weight loss which I would have been quite happy with but am quite content with it just helping with the headaches as it was intended!
~Karen
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Patty UT,
I felt strange for about a week (floating, not really with it). After that I settled down and because the headaches weren't coming as quickly or as hard I kept on taking it. I too did not have the much anticipated weight loss...........................
A friend takes it and lost 30 lbs the first six weeks. I was very jealous.
Brendalu
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Katie-
Thank you so much for sharing your notes. I was disappointed at having to cancel my plans at the last minute. Chicago is my husband's home town. I definitely plan to attend the symposium there in 2 years.
Thanks again, your notes were great!!
Viki
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Im looking for more info on the trans ear. I didn't get to try the baha but i am not really sure if i want anymore hole in my head. Michele how do you like yours?
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regirl--type transear into the search feature and a few really good threads on it will come up. There are a few forum members who've had good success with it and a few who couldn't manage it. I sold a big painting today (YEAH) so will put the $ in my Transear Cookie jar unless I can swap a painting for one--the inventor has his Audiologist practice and factory just over the mountain from me and I'm calling for an appointment soon!
Capt Deb 8)
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Hi Cheryl and (my lovely daughter's name!!) and Katie--Thanks for the info--is there anyway I can get any info from discussion regarding re-growth?? I have growth (continued from residual left in 2001) and was all ready to have GK w/Dr Noren in RI (years of experience and one of the nicest and best) but Mass Gen (Boston, MA) Chief Radiation Dr Loeffler advocates FSR (25 sessions as he said 50% chance GK would further harm my facial nerve) so now I'm scheduled for FSR to begin Sept 10... At this point I guess it doens't matter but I'd still like more info... (Read all Dr L's articles on pubmed.gov but nowhere saw the 50% mentioned)... Dr Noren says no way... Regards, Mary from MA ???
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Mary from MA -
Audio transcripts (Cd and mp3, I believe) of all of the sessions will be available soon. They said it would take a few weeks to get through the production process. Keep an eye out on the ANA website, or contact the ANA office in Atlanta.
Katie
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Nancyann,
A couple of docs told me vitamin B-12 and folic acid. I take then each day.
mema
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Thankyou mema !!
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Thank you, thank you Katie for sharing your notes with us!!
Kathy