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Kennedy's Disease Chat Transcript  03-15-2008

Topic:  Special Guest - Dr. Kenneth Fischbeck

Host: Mike Goynes


BEGIN CHAT

 

TerryW: Hello all

Bruce: Morning Terry

MikeG: Yes, and I found a link to his office and staff.

MikeG: Hi Terry.

TerryW: Everyone is early

MikeG: oh yeah!

TerryW: We should have many here today

TerryW: Time to fine tune my Font

Bruce: You just want to stand out from the rest of  us

Alexandre: Good morning all, where are having a typical autumn wheather here in south of Brazil

Butch entered the room.

TerryW: More like SIt

MikeG: JD, I had a stress test about a month ago and fell on the treadmill - it will be chemical for me from now on.

Bruce: Morning, Ron

Butch: Good morning to all.

JD: did chemical...

MikeG: Hi Ron.

TerryW: hi Butch

Butch: Sorry   morning.

Bruce: Alex, what are you temperatures this time of year?

Butch: Bruce--did you get any of the strong winds they had in Atlanta?

Alexandre: from 15º to 25º  Celsius grade

Bruce: Nope, it was pretty quiet.  Just had some hard rain is all.

MICH entered the room.

Bruce: Morning Utah

MikeG: getting cooler down there, isn't it?

TerryW: I watched the news last night here and saw the damage

TerryW: was it an F1 or F2

MikeG: Morning Mitch

Bruce: People were very fortunate with the two tears in the dome and the girders/score board swinging all over the place.

MICH: actually getting more spring like...but possibly more snow tomorrow morning

Butch: Terry--how was your trip to Disney? Did it go OK?

TerryW: Yes it was good

Murf entered the room.

TerryW: So many sick people there, I got sick on the way home

Murf: Morning all

Bruce: Morning Murray

Butch: How was traveling with the chair?

TerryW: Morning

Butch: Hi Murf.

MikeG: Hi Murf

TerryW: Butch it was a bit stressful but I talked to every loading chief before they loaded or unloaded and the chair made it ok

Murf: good turn out, you'd thing Kurt was coming or some thing

Butch: Good...

Bruce: It is very unusual for a tornado to hit downtown in a major city.  The buildings usually break up the funnel formation.

Murf: //11

TerryW: My electric chair is more of a pain to travel with than others because of the hydraulic lift seat

TerryW: if it was a normal electric it would have been easy

Murf: electric chair?

TerryW: Power Wheelchair

Butch: It takes a little more to get UP in the world. LOL

Murf: sounds shocking

Murf: where is that tape?

mobiusloop entered the room.

TerryW: strap me in, I am ready

TerryW: hi Mobi

mobiusloop: Hi everyone

MikeG: I'm scared to travel with my chair - that's why I have a break down scooter...

Murf: Terry I got my Ultram ER

Bruce: Morning Mobi, how were the apples and onions this year up there?

TerryW: how does it work for you

mobiusloop: spring is comming

Murf: better than Aleve. that was raising my blood pressure

MikeG: very good - they've only broke it about 3 times... :)

MICH: Terry, I've had two chairs with the lift seat, 1st one had an on-board charger... the one now has like a transformer box at home so I can't just charge it anywhere ... what a hassle

TerryW: wow Mich, sounds like it

Bruce: When my chair was in for repairs, the loaner had a exterior box and it was a hassle.

Butch: Some time I think a scooter is the way to go. Much easier to deal with than a chair.

mobiusloop: I just got a Hoveround. It's kind of big for me

TerryW: I hate supermarket scooters, I can crawl fater than them

Bruce: My brother likes his Hoveround.

TerryW: faster

Murf: I can't use a scooter.

mobiusloop: It's great outside but too big  for inside

Gary_KS entered the room.

Bruce: Morning Gary

Murf: I need to pull up to a desk and use a keyboard all the time

Dr. Fischbeck Arrives

MikeG: This morning the Kennedy’s Disease Association is honored to welcome Dr. Kenneth H. Fischbeck, MD, to our chat room.  Dr. Kenneth Fischbeck serves as Chief of the Neurogenetics Branch of the National Institute of Neurological Disorders and Stroke at the National Institutes of Health.  Dr. Fischbeck holds an A.B. magna cum laude in Biochemical Sciences and an A.M. in Biology from Harvard University, and an M.D. from Johns Hopkins University.  Before assuming this position, Dr. Fischbeck held various teaching positions at the University of Pennsylvania. Most recently Dr. Fischbeck served as a Professor of Neurology at the University of Pennsylvania.

Dr. Fischbeck holds a specialty certification from the American Board of Psychiatry and Neurology, and he is a member of the American Academy of Neurology, the American Society of Human Genetics and the American Neurological Association.  In addition, Dr. Fischbeck is a member of our Scientific Review Board.  He also serves on the Scientific Advisory Board for the Hereditary Disease Foundation; the Basic Science Subcommittee for the American Academy of Neurology; the Scientific Advisory Boards for the Spinal Muscular Atrophy Foundation and the Dystonia Medical Research Foundation; and the Scientific Leadership Advisory Board for Merck Research Laboratories.

MikeG: For more info on Dr. Fischbeck and his staff see:  http://intra.ninds.nih.gov/Lab.asp?Org_ID=88  Dr. Fischbeck is here this morning to answer questions on Kennedy’s Disease including current research and the NIH clinical trial.  Please welcome Dr. Fischbeck!

Gary_KS: Good morning all. I am Gary Uchiyama. Spring has come but it is still snow this morning in Kansas City. L

TerryW: Hi CHuck

Murf: Hey Chuck how's the weather?

Butch: Hi Dr. Fischbeck--Glad you could make it.

Chuck: The weather in WV is beautiful today and Hi to all also.  This is "old" Chuck

Dean entered the room.

Butch: Hi Anna Lea and Charles.

TerryW: I hope that nobody gets bounced out of the room today

Chuck: Hey there Butch

MICH: Dr Fischbeck, it's an honor...I'm 61 and in 1992 when I was diagnosed I copied all the KD journal articles... most had your name

mobiusloop has left the room.

MikeG: well he said he's be here...

Murf: oops I keep forgetting and bugging the Canadians with the nice weather here

MikeG: Terry, did you see Kurt's message about the chat?

Butch: Mike can answer any questions til Kurt gets here.

MikeG: he said he got in with no problems...

MikeG: RIGHT!

TerryW: Yes Mike, I sent you the FYI

Murf: Anyone confirm last week?

TerryW: He said he would be here

MikeG: yes, and he sent one to me also.

mobiusloop entered the room.

TerryW: I hope no emergency came up

Butch: Best laid planbs of mice and men....

Murf: ok I can just see it now ... Kurt logs in and everyone pounces //2

Butch: plans

MikeG: I also gave him my number if he had problems...

loshimo1 entered the room.

TerryW: ok

loshimo1: Good Morning Everyone, this is Luis Shimomura from San Francisco, California

TerryW: Hi

Murf: Hey Luis, hows the weather?

ARofer entered the room.

MikeG: good morning Luis

Butch: Hi Luis.

loshimo1: This is my first time in the chat, please be gentle with me....

TerryW: glad you could make it

TerryW: Hello Arofer

Butch: gLAD YOU COULD MAKE IT.

ARofer: hello everyone, i am happy to be here

Butch: Sorry!!

mobiusloop: What's he story on annoymous testing.? I have a 23 year ols grandson and we don't want him branded at that age. He might join the Air Force.

loshimo1: After a few weeks of unusual warm weather, it's back to the wet season.

TerryW: I hope that K. Fiscbeck has the time difference correct

ARofer: On anonymous testing, the subject may be tempted to lie to insurance companies in the future -- this is dangerous

Murf: We finally got rid of the rain and sunny in Houston

Murf: No test ... no lie

Butch: mobiusloop--I have the same thoughts with my grandson. He is aware of what Kennedys is and what to look for in the coming years.

Dean: Phila. sunny and 61 today

MikeG: that's right - don't bother even getting the test.

TerryW: 35 here in California

Murf: I would tell him to join up now.

Murf: Houston 66

mobiusloop: Daylight time saving is just a nusience. we should all campaign to eliminate it

ARofer: 45 near Santa Cruz, CA

mobiusloop: 32 here in Yakima

Murf: Yuck

Murf: :-)

Murf: Terry do you want me to call Kurt?

Murf: Bruce?

TerryW: Yes Murf, if you could

Bruce: Yes

MikeG: do you have his home #.  I just tried his office.

Murf: ok ... no home #

TerryW: Mobi,  I have not heard anything on anonymous testing

Dean: leave a message @ the office

TerryW: Sorry for teh delay folks

MikeG: Terry, there are some labs that will do it.

Murf: I just left a message with John. He has Kurts home #

Chuck: NIH will test to see if someone is a carrier.  The person must be 18 or over.

mobiusloop: I also wanted to ask Dr. Fischbeck if there was a way to tell weather foot neuropothy and one leg weakness was caused by KD or spinal disc degeneration. My Dr. here in Yakima can't make the call.

Bruce: I will sign off for a few minutes just in case he can't get in because too many people have signed on or something.

Bruce has left the room.

Butch: Chuck--I spoke with Dr. Kennedy--He said to say Hi and that he remembered us from the muscle biopsy test he did on us.

Murf: I wouldn't worry about testing if he wants to go into the Air Force. I wouldn't lie either, I'd just join up. If he starts getting weak then he has a good chance of not getting mis-diagnosed.

Chuck: We sort of had a party and gathering at NIH that day Butch.

mobiusloop has left the room.

mobiusloop entered the room.

Dr__F entered the room.

kellyC_ entered the room.

Murf: Hey Doc

TerryW: there he is

MikeG: Good morning Dr__F and welcome.

MikeG: This morning the Kennedy’s Disease Association is honored to welcome Dr. Kenneth H. Fischbeck, MD, to our chat room.  Dr. Kenneth Fischbeck serves as Chief of the Neurogenetics Branch of the National Institute of Neurological Disorders and Stroke at the National Institutes of Health.  Dr. Fischbeck holds an A.B. magna cum laude in Biochemical Sciences and an A.M. in Biology from Harvard University, and an M.D. from Johns Hopkins University.  Before assuming this position, Dr. Fischbeck held various teaching positions at the University of Pennsylvania. Most recently Dr. Fischbeck served as a Professor of Neurology at the University of Pennsylvania.

Dr. Fischbeck holds a specialty certification from the American Board of Psychiatry and Neurology, and he is a member of the American Academy of Neurology, the American Society of Human Genetics and the American Neurological Association.  In addition, Dr. Fischbeck is a member of our Scientific Review Board.  He also serves on the Scientific Advisory Board for the Hereditary Disease Foundation; the Basic Science Subcommittee for the American Academy of Neurology; the Scientific Advisory Boards for the Spinal Muscular Atrophy Foundation and the Dystonia Medical Research Foundation; and the Scientific Leadership Advisory Board for Merck Research Laboratories.

Dr__F: Sorry I'm late, everyone!

mobiusloop: good morning

kellyC_: Good Morning doc

JACK entered the room.

Dr__F: I was out chopping wood and lost track of the time!

loshimo1: Good morning Dr_F

MikeG: no problem - we're glad you could make it.

Dr__F: Any questions/

Murf: cool wish we could help you

JACK: GOOD MORNING ALL

TerryW: we can extend the chat 10 mins if needed

Dr__F: No problem

MikeG: sure

mobiusloop: I'm having trouble staying locked on

MikeG: I'm sure what's foremost on everyone's minds is the dutasteride trial.  How is it going so far?

Murf: Is Ultram ER ok for the trial drug

Dr__F: Before the questions start, perhaps I can report on the interim analysis of the dutasteride trial we have been running here at the NIH. After one year of treatment, there was no significant difference between dutasteride & placebo in muscle strength oir side effects, soi we are continuing the trial through the end of the year, as originally planned.

Alexandre: Be welcom Dr_F

ARofer: Dr_F.. if you discovered a great advantage to KD patients in the dutasteride trial, would you terminate the test in order to make these advantages available to everyone?

JD has left the room.

Dr__F: I don't know Ultram ER. I can check & get back to you later, if you send me an email at This email address is being protected from spambots. You need JavaScript enabled to view it..

Murf: ok

JD entered the room.

Bruce entered the room.

Dr__F: Unless something unexpected happens, we plan to continue until everyone has completed two years of treatment, in early December. Then we'll analyze the results and get the word out as quickly as we can.

mobiusloop: My question was is there any way to determine weather foot nueropothy and left leg weakness is caused by KD or spinal disc deegegeration?

Dr__F: We're already starting to talk about what treatment to study next.

Murf: I'll be done in June !!!

Murf: So I can start the new study in July :-)

MikeG: If the dutasteride trial turns up to be no help, is there another drug that is targeted for testing?  ASC-J9?

Butch: We all were hoping to get some positive results of the clinical trial. If nothing else it brought us KD'ers together.

loshimo1: Dr__F, from what I understand, the similar trial conducted in Japan had better results...Any idea on why the difference in results??? We the participants there all of Asian descent?

JD has left the room.

Dr__F: KD and disc degeneration can botyhj cause nerve damage, although there are differences. The nerve damage from a disc is usually asymmetrical and associated with shooting pain, for example, while the nerve damage from KD is not.

JD entered the room.

Dean: Is there another trial study soon?

JD: j

mobiusloop: thanks

loshimo1: Meant to say "We're the participants there all of Asian descent"?

JD: oops

Dr__F1186 entered the room.

TerryW: JD  The transcript will be online in a day or so if you miss anything

Dr__F1186: Whoops I was just cut off & had to rejoin.

JD: thanks, i'm loosing m y connection

MICH: Doctor...I'm 61 and was diagnosed in 1992... at my age cholestrol is an issue... any info on KD vs statins... using simvastin my CK went to 1060... so now on Tricor and Welchol instead

Dr__F has left the room.

Dr__F1186: Statins should be OK.

MikeG: looks like he's having problems../.

MikeG: chat room problems...

TerryW: :(

Murf: MICH: I'm in the same boat. CK 900 I'm on Zetia 10Mg

Dr__F1186: The Japanese trial results have not been published yet. Last I heard a couple of months ago, they were having more side effects with leuprolide (decreased libido), and a possible beneficial effect on swallowing. We haven't analyzed our swallowing data yet.

loshimo1: Thank you Dr.

Murf: How can you decrease from 0?

ARofer: Mich... my doctor gave up on statins for me when I reported weakness in my legs. But I cannot pinpoint that weakness to the statins, it may have just been kd progression

MikeG: :)

Dr__F1186: The japanese have gone on to a larger, phase 3 study in 9 centers, to see if the swallowing effect holds up.

mobiusloop: I hear about all of these drugs; my Dr. won't try anything.

ARofer: Dr_F.. it appears that NIH has lots of funding ... is there enough going to KD?

Dr__F1186: Statins rarely cause muscle damage, with increased creatine kinase. KD patients have increased creatine kinase in 80-90% of patients without statin treatment.

Alexandre: Doctor, is there any trial with DHEA 25 as treatment

Murf: ARofer: We are always looking ro raise money to finance (seed grant) researchers

Dean: When is the next trial study and with what compound?

ARofer: Murf: great job there and my rich relatives have contributed

Dr__F1186: Our NIH funding for KD has been good, although overall the NIH hasn't been doing so well. Too many other uses for govt money!

TerryW: Dr. Fischbeck,  Do you know if muscle breakdown with a disease like KD causes urine to have a High Acidic level?

Murf: Tell them to go to the webpage and donate! :-)

Dr__F1186: Go to the web page & donate!

ARofer: murf: yes will do

JD has left the room.

Murf: Hey doc ... great minds think alike

Dr__F1186: I don't know of muscle breakdown acidifying the urine. That's another thing I could check, but I haven't heard of it being a problem.

JD entered the room.

TerryW: thank you

Butch: We still need the hi profile person to champion KD for us. Any suggestions?

ARofer: The marathon runner

Murf: good questions Terry

Dart! entered the room.

Dean: Dr. when is the next trial study and with what compound will you use?

Alexandre: Doctor_F, is it common dizziness in KD indivoduals?

loshimo1: We received an email from a Dr. Gen Sobue in Japan where he stated that they've seen some positive observations using something he called "heat shock protein modulators". Anyone know what this is?

mobiusloop: Haven't had a problem with acidic level.I asked my Dr. about HGH but he just gave me a blank look. At 81 I'm not worried about long-term effects

Dr__F1186: I also don't know of any DHEA trial. I have a meeting coming up next month with Merck to talk about "sarcopenia" (age related muscle atrophy. My hope is that the companies working on abanabolic steroids for age-related muscle weakness in normal people maight be lured into working on a neuromuscular disease like KD.

Dr__F1186: That's "anabolic"

kellyC_: Very Informative DR-F

MICH: Doctor, have KD and ED medicines had any bad results that you know of with the extra low testosterone level?

Murf: Dr__F1186: will that make us add wieght?

Dean: DR. will people in nih's data base br called for another trial studt?

Murf: I have a weight problem now

Murf: I'm a little top heavy

kellyC_: me to

Murf: :-)

Dr__F1186: Sobue's group has found benefit in their KD mouse model with a drug called 17-AAG, a derivative of geldanamycin, which stimulates heat shock proteins. This is another possible approach to treatment that could be tested in eventual clinical trials. I think both 17-AAG and ACS-J9 may need some more animal testing for safety before going into patients, though.

JACK: I AM MIDDLE HEAVY

Murf: LOL

Butch: weebles wobble but they don't fall. LOL

loshimo1: My head seems to have gained weight... I'm having trouble keeping it up...

JACK: BUT THAT IS BECAUSE I AM NOT AS ACTIVE AS I USED TO BE

Dr__F1186: Ideally anabolic steroids help put on muscle weight, but not fat.

JACK: YES WE DO FALL.  LOL

Murf: Tks

kellyC_: So Overall.... Since the trial started? @NIH.. there is no Differance with the Placebo and Dusteride. @this point hey DR_F

Alexandre: Murf, hidrogymnastic is helping me a lot, I have lost 2,5kg and I am more flexible

Chuck: I have the other side of the weight problem (loss of weight) due to difficulty in swallowing.  I am sure I fall as much as heavy ones (twice in the last two weeks).

Dr__F1186: Yes, we'll use the NIH patient list and the KDA to get out the word about any future trials here. Involvement of you guys is key.

Murf: Alexandre: What is it?

MikeG: Dr__F1186: If the trial turns out to be no help, will everyone just abruptly stop taking dutasteride like they started?  Or is a slow down period required?

Butch: Good question,

loshimo1: Dr__F, I'm amazed how quickly you can make references to all these inquiries coming from so many people. You're amazing!!!!

Alexandre: Murf, physical exercises in the water

Bruce has left the room.

Dr__F1186: We set a fairly stringent cut-off for the one year analysis in the dutasteride trial. It would have taken a fairly dramatic effect (either good or bad) for us to stop the trial early.

Murf: Alexandre: Just finished my pool and use it 2 -3 times a week

JACK has left the room.

Dr__F1186: I don't think there's a need to taper dutasteride gradually.

MikeG: ok, thanks.

Alexandre: that's very good Murf!

Bruce entered the room.

Dr__F1186: We have also been discussing a trial of exericise treatment, in both mice & patients.

Bruce: Would the trial just be exercise or a combination of exercise and some drug?

Alexandre: Murf, you should make execises with a physioterapist or a personnal trainer in the pool

MikeG: you beat me to it Bruce.

Dr__F1186: We haven't decided yet how an exercise trial would be done or whether to include a drug. It depends on which drugs look most promising when we get the study going.

Murf: I'll need to contact them again Alex but will put that on the "to do" list

Gary_KS has left the room.

JD: the more activity i do the easier it is for me to fall.  as my legs give out.

Butch: I think we ought to do a trial with 8 oz of burbon per day. At least we would have a reason for falling down.

Gary_KS entered the room.

TerryW: I have had to stop bringing our hoses into the stables, I keep falling under them :(

kellyC_: //2

JD: at least we won't feel the pain :)

Gary_KS: I am back.

Murf: Butch: I tried that and fell 4 times that year

TerryW: Horses

MikeG: I know some guys who are taking creatine and finding good results.  Any chance that may be used?

Dr__F1186: Some KD patients have reported benefit from exercise, at least when they can do it.

Murf: breaking a foot each time

Bruce: I will attest to the benefits of exercise.  I do them every day and they have helped in many ways.

Chuck: How about Tai Chi.  It is a gentle exercise and one can even sit and do what they can.

Dr__F1186: Crewatine ahs shown some beneift in other neuromuscular diseases, so it might help. It appears to be safe.

mobiusloop: Lately I have cut back on excersise---I don't have the motivation.

Dr__F1186: Sorry for the typos.

Bruce has left the room.

Murf: mobiusloop: me too but I have to force myself

Butch: didn't even notice doc.

TerryW: Crewatine AHS, never heard of it

Bruce entered the room.

TerryW: Is it sold at health stores

Dr__F1186: That's "creatine"

TerryW: Ok thanks

ARofer: Dr_F... how about the future of stem cells for a trial?

MikeG: Thanks!

MikeG: good question!

Dr__F1186: A fellow in our lab, Tyler Pierson, is working on stem cells, but I think this approach has a ways to go.

Dean: Dr. what is the down sidre of taking creatine?

Murf: Do the Dems like that better than the Republicans?

Murf: Stems cells

JD has left the room.

Murf: research

mobiusloop: Dr. Would it be proper to ask my Dr. to contact you?

Dr__F1186: I don't think there's much of a downside to creatine, except spending money on a treatment that has not been proven to work.

DarwynP entered the room.

Butch: Hearing alot about DNA testing that they can extract certain parts of the DNA which might help people with KD type diseases. Any truth to this?

Alexandre: There is a scientist here in Brazil called Mayana Zatz, that have adavanved studies in treatment for neurodegerative diseases with stems cells

Dr__F1186: Yes, I'm glad to talk to your doctor. He or she can get me by email at This email address is being protected from spambots. You need JavaScript enabled to view it. or phone at 301-435-9318.

Murf: Doc. we really really appreciate all the work you are doing and have done to try and find a drug for us. We really can't say thank you enough

Dr__F1186: Yes, I know Mayana Zatz, and she is a good clinical investigator. I don't know about her stem cell studies, though.

Bruce has left the room.

Alexandre: she works for the "centro de Estudos do Genoma Humano da Universidade de São Paulo"

MICH: Murf...when I broke my right foot two weeks ago.... the follow-up xray showed I broke the 5th and maybe even fourth metatarsal at the crown... sound familiar?

Dart!: Deep empathy for folks having problems with bones breaking. It is not as though we need MORE problems!

Bruce: Kurt, I am not certain what is happening today, but many of us are being kicked off the chat regularly.  I apologize for the problems.

MikeG: yes, it seems there are several problems with the chat this morning...

Dr__F: DNA modification has been talked about for years, but I haven't seen convincing results. More promising is RNA modification or suppression by RNA interference (RNAi).

Murf: I have it Terry

Alexandre: But in one months they will discuss about it again and I believe they will aprove this experiences with stem cells

TerryW: I have been saving every few minutes also murf

mobiusloop: At 81 I can brag that I have never broken a bone. Even playing football in High school and skiing until I was 67. Drank lots of milk all my life.

Murf: we've leart

Murf: learnt

Bruce has left the room.

Murf: mobiusloop: you will :-)

mobiusloop: My "other " problem if disc degeneration

Dr__F: Tyler Pierson in our lab is using neural progenitor cells in mice. The govt doesn't mind stem call research in mice! Also, I've heard that all 3 US presidential candidates favor stem cell research

Dean: So at this time Dr. the present trial study is not working?

TerryW: Mike, have you been saving the transcript

mobiusloop: Yes! I'm glad therewill be a "change'

Dart!: Our TV news reports of obtaining stem cells from surface skin. Anything to that?

mobiusloop: in stem cell study

MikeG: Dr. Fischbeck, we certainly appreciate you taking the time to be with us on our chat today.  The chat is oficially over but will stay open until everyone has left the room.  Stay as long as you wish.

MikeG: yes

Murf: Dean: The drug we're taking is supposed to stop the Dihydrotestosterone from entering the nerve cell and killing it. Is that a corrct short answer Kurt?

Dr__F: At the present time we don't know yet whether dutasteride or leuprolide is effective. We should know about dutasteride (or at least have a strong indication) by this time next year. I'm sorry it takes so long. Part of the problem is that the disease progresses so slowly, itr takes a long time to tell whether a drug is slowing the progression. Hopefully we'll get a treatment eventually that actually improves strength rather than slowing progression.

ARofer: Thank you for all your work and your time today, Dr. F. Hope to meet you when I come to NIH in May.

Dean: Thank you Dr.

mobiusloop: Yes, thanks for visiting with us

loshimo1: Thanks everyone!!!

loshimo1 has left the room.

ARofer: Alexandre, thank you for the interesting input...

Chuck: Thanks Dr. F. and Dr. Kennedy for all they do for all of us KDer's.  In fact thanks for all at NIH>>>>>

Dr__F: Yes, dutasteride & leuprolide both work by reducing androgens, particularly dihydrotestosterone. The approacch is based on benefit in mouse & fly models of KD.

Alexandre: Doctor Fischbeck, thank for what you have doing for us, KD individuals!

DarwynP: hi, Dr. F. It is Darwyn Pilling, I HOPE your son enjoyed the "Fuken eh!" shirt.

Dr__F: I'll stay on for at least a few more mintes in case there are more questions. I'm sorry to start late.

Murf: Hey Darwyn how are u?

Dr__F: Thanks, Darwin. He did!

Dr__F: Sorry. that's Darwyn.

DarwynP: Still kicking murf

mobiusloop has left the room.

kellyC_: ty

MICH: Doctor...have you heard of any problems with Ed medicines and KD?

Murf: good!

MikeG: Dr, is L-Arginine and creatine about the same?

Dr__F: I'm not sure what you mean by Ed medicines.

MICH: That was ED

Butch: Sure would like to see some great results from the DNA testing. Sure would be nice to have a chance at reversings KD.

Dr__F: No, L-arginine and creatine are different

ARofer: Dr_F... have there been any efforts to eradicate KD through genetic engineering in the womb or even prior to fertilization?

billeric entered the room.

Alexandre: Doctor_F, is it common to have dizziness in KD?

MikeG: ok, thanks.

Murf: got a BOD meeting in a few. Thanks Doc and see you cripples new chat!! stay on your feet!

Dr__F: Sorry, I don't know about ED meds.

MikeG: viagra!

DarwynP: bye murf

MikeG: viva!

Murf has left the room.

Dart!: Thanks to All forr the 'get-together'. May everyone enjoy better health!! Be with you again in two weeks!

Butch: I must go for now so, stay helthy till next we chat.

Dr__F: Pre-natal testing is available for KD, but what we'd like to see is treatment for patients who are already symptomatic, like you fellows.

Butch has left the room.

Dr__F: Dizziness is not a common symptom in my experience, but it could occur. If it's a real problem, it's best to check it out with your doctor.

ARofer: Anecdotal observation: I believe the loss of kinesthetic sense in KD causes dizziness when you cannot see your body, e.g., when you are looking straight up at the sky

Dr__F has left the room.

Alexandre: Thank you Dr._F, I will check with my doctor

Dart! has left the room.

Gary_KS: Dr. F, thank you so much for your time and giving us the latest information about KD trail.

Dr__F entered the room.

kellyC_: HEY DOC -F WHAT ABOUT EYE PROBLEMS? WITH FASICULATIONS IN BEHING THE EYE MUSCLE I HAVE ALOT OF PROBLEM WITH MY LEFT VISION ... I OFTEN WONDER IF ITS KD RELATED.

MikeG: I have the same problem Kelly.

kellyC_: really?

billeric has left the room.

kellyC_: yes me to bigtime

TerryW: Kelly he is out of the room

kellyC_: oh ok

TerryW: I think

Alexandre: Good bye all, it is time to lunch, here in Brazil! Thank you once more Dr. Fischbeck

MICH: It is in deed an honor to get input from you (Doctor) this morning, thank you, when I was  diagnosed over 15 years ago, I xeroxed every journal article I could at the medical library on KD so your name became quite familiar.

DarwynP: bye alex

MikeG: left eye is weaker as is the left side of my body... are you Right-handed?

billeric entered the room.

kellyC_: I'am left handed

Dr__F: Sorry, I blipped out again. Now I get it, ED = erectile dysfunction. There was a good discussion about this at the Las Vegas meeting. These drugs are generally effective at what they are designed to do, and there is no proiblem using them in KD.

Alexandre has left the room.

 

END CHAT