I have noticed that sometimes, a member will address a question without taking into account that the one who asked the question is from another country and the help he/she is kindly offering is unfortunately of no use to the poster.
I think it is because some people do not know how to access the profile of the members.
Usually the profile mentions the country of origin.
So, I thought I would help those who do not know how to find the member’s profile:
Just click on the butterfly or the picture next to the post on the left.
I hope this help. Take care everybody. And to all the American members, a Happy 4th of July!
Thank you Cicina - that is both helpful and diplomatic. The person who posts a question where location would make a difference could also include something like: “I’m from Burnaby BC Canada”. By the way, happy 4th of July to those who are celebrating it.
Thank you, Mish. You have a good idea!
I did not want to offend anyone. I find this website wonderful, but not always easy to navigate… For instance, I am never sure if someone receives a personnel message…
Thanks Mish, I take your point and never knew how to access profile [although I have often tried!]
I guess if response is no applicable to your country, you just ignore it... at least that's what I do.
Cicina, this is a very valuable pointer as I had no idea about the butterfly/photo bio access. I am from Topanga Canyon, CA. USA and find this site very helpful and supportive. I have beeb diagnosed with "Miled Ataxia", and am trying to find a doctor locally who deals with glutenataxia, or at least knows what it is. Most of the doctors I have seen don't know much about gluten. I am gluten-sensitive, not Celiac.
Glad to have been of some help to access members’ bio.
You said you are looking for a doctor who deals with gluten ataxia. I did some research (I love researching, it is like a hobby for me) and found a doctor at UCLA who is doing research on this, if LA is not too far for you.
His name is Brent L. Vogel, MD.
Here is a website which talks about gluten ataxia. Read the 4th paragraph. http://www.todaysdietitian.com/newarchives/030314p16.shtml
You might prefer to contact him first. No sense going there if he cannot help you. Here is the website of his lab : http://fogellab.neurology.ucla.edu/
Click on “Contact us” on the left. Usually, those doctors who publish their email on the Internet are very prompt at answering as they are eager to help. I have contacted several doctors that way for another rare disease that I have and they have been extremely helpful. When you think of it, helping us helps them as we are another “guinea pig”… Well, as long as they don’t do a baboon’s cerebellum transplant on me, I’ll let them study my case… Hee! Hee!
Let me know if you need more help.
Take care. Good luck and best wishes to you.
Cicina, This was the most helpful info I have received yet. Better than the doctors! You are THE Best.
The doctor in the paragraph yu recommended is associated with the neurologist I will see in a couple of weeks. Great research!
I am about to publish a cookbook-memoir about gluten sensitivity, (not celiac disease), so a lot of this information was not new.
I want to get enrolled in the study that is mentioned in this post you recommended. Do you know how to do that with your rocket science research? I tried to fing Dr Aleadini's contact info with no success. Is it too much to ask this favor of you? The doctor who began the study is Dr Armin Aleadini at Columbia U Med School and it may still open.
Again, you have helped more than anyone find the info I need. I would hire you if I could afford it. Let me know id there is anything I can support you with. Anything at all.
Aaaaah! I am blushing ! You are too kind Judita.
I am putting my thinking Sherlock Holmes’ cap on and smoking a pipe (he did smoke the pipe, didn’t he?) and I will be back very soon with some info for you. Hopefully…
I wasn't exaggerating, nor was it just a compliment. I meant what I said!
Thanks so much for your offer to research some more. I truly appreciate it and want to reciprocate in any way I can. Do you have anything you want to brainstorm? I do that as part of my marketing coaching for creative entrepreneurs. I would love to iff you a complimentary free hour on the phone on the topic of your choice. Let me know if this appeals to you.
Judita, you are so nice to offer your services as a coach. I am going to be honest. For the last two years I have been dedicated to recuperating from a nasty cerebellar stroke which brought on my ataxia. I went from being a very energetic, athletic woman to being unable to walk or even sit up in the space of a few seconds… With hard work I went from wheelchair to a walker to using a cane. Bottom line, I am exhausted all the time and would not have the energy for brainstorming about anything much. However, thank you for your kind offer, but just knowing that I have been able to help you is reward enough for me.
Helping others has always been very uplifting! You made my day! Really.
To get back to my investigation, here is what I found so far about dr Aleatini: http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=aa819&DepAffil=Medicine
There is a phone and Fax number you may want to use for contact. No email. This, in my experience, means that you are going to deal with receptionists or nurses who are doctors guard dogs. They often bark and even bite sometimes… So I wish you good luck.
So far, nothing about the clinical trials. But I I’ll keep on searching. I must stop for now. Things to do, places to go… I’ll be in touch soon.
Before I go, you could try contacting Dr Fogel’s lab (see website in previous post) and ask if they could help you get in the trial.
Cicina, What a huge challenge you faced with this stroke. And I am impressed that you have progressed so far. 2 years must seem like a very long time to one who was so healthy before, but to me it sounds like you have made a huge improvement.I understand why you don't want to brainstorm. However, it's fun so I hope you will take me up on it one day.
You might also want to check out the gluten-free and Paleo diets. After I stopped eating grains and sugar, i began to feel a lot better. I also eat very little fruit and dairy.
Here are some books I recommend to my clients:
Your Mind Can Make You Well by Masterson (this book helps me with everything the most of any book I have read.)
Writing As A Way to Heal by DeSalva
Thanks very much for Dr Aleadini's contact info. I had found that link but didn't see the contact info. You are certainly an expert researcher! I will contact him tomorrow about the study.
I did email Dr Fogel again today. In fact, a couple of days ago, I called his office late in the day and talked to a man whom I am sure was him, but he wouldn't give me his name. This person told me Dr. Fogel was booked up for 2 months ahead and wouldn't let me make an apt.Dr Perlman, Fogel's supervisor, earlier in the month, had suggested he would be interested in my case, and that is why I tried to reach Fgel. A couple of days later, Dr Perlman's office told me I would be seeing another doctor, and asked me to call back for an apt in a couple of weeks.
Hope the rest of your weekend goes well and thanks so much once more for all your valuable help!
I could not find Dr Laetidini’s email anywhere. However, if you want to pursue this trail, I have an idea:
I noticed that the article mentioning the research trial was from March 2014. So, recruitment for it could still be opened. The author of the article is David Yeager, a free lance writer who has written numerous medical articles in different publications. He is based in Royersford, PA. He may be able to find some info for you. His phone number is 610-■■■■■■■■.
Whatever you decide to do, good luck to you. Hope you find an answer.
PS I forgot to thank you for the books titles. I will look into them.
As for the Paleo or GF diet, since my ataxia is from a stroke, It is not food related. Being French, I believe in eating everything in MODERATION. I think this is the key word for good health, unless of course in the case of food allergies or sensitivity.
Cicina. Thanks for finding this valuable info.Will update you if I find anything interesting.
I lived in paria off and on for a few years as an art student when i was 18-22. I understand about the french diet. Don't want to argue with you, however, grains can lead to heart and all the other organs trouble. They affect the immune system and inflammation. it's the metabolic syndrome.The French are on track about eating lots of butter and other healthy fats and lots of veggies. i agree about eating everything in moderation that you are not sensitive or allergic to.
I have noticed this happening often and I think both the poster and responder need to be clear about country for many replies. even if the information is the wrong country for the asker, there may be many needing the same information in other regions so it isn't a waste on some topics.
Well, Judita, you know the French since you lived in Paris, so you know how we love to debate…and be right:-)
But I will just say that although I respect your opinion, I am of the firm belief that an overload of anything whether it be grains, sugar, coffee or anything else like we see in this country, plus a very sedentary lifestyle and lack of exercise, will lead to ill health, from cardiovascular disease, to diabetes, to cancer and many more…
By simply eating a little of everything, exercising ( still moderately, no extreme sports with hours of training) a lot of problems would be eliminated.
I know it sounds very simple, but it is the basis for good health. Sometimes we look for scientific explanation when the solution is just a matter of common sense, although I understand it will not make us immortal, as I know there is more to it than just eating right…
And remember, for every study done proving something, another one will come out proving the opposite. We just can’t win. So let’s do our best.
I will be the first to admit that my best did not work for me, yet I would not do anything different. But all my doctors told me that if I had not been in such good shape I would be much worst off or may be six feet under as one of them put it ! to be honest, I think I was the runt of the litter) Hee! Hee!
I hear you and appreciate your prompt response. I certainly agree about moderation and no overload in our diets. In fact, I think there is no such thing as a diet that works for everyone and each person must listen to their inner self and use their instinct to choose what works, as well as working with a medical and nutritional expert, I took me many years and many diets to come to this conclusion. You are right when you talk lifestyle and not diet.
Well said Judita! Thank you for this fun exchange of opinions and good night!
Bon Soir. C'est un plaisir ecouter vostre idee!.
I'm origionally from the UK but now live in the US I find any type of reply is fine for me, even being a British person at heart I have learnt more here about support systems back in the UK not realizing how much stuff we did not know about information, support groups, where to go if need funding. However here in the US I am at a starting point it's nice to see everyones replies even if it isn't related to that country because it can give you some ideas on where to look or clue you in. Plus others reading may go wow that was just the information I needed just on the off chance. Also it allows me to I hate to say it compare the different countries support systems and what not and sometimes it can be quite shocking too.
Thanks for that and NOT taken the wrong way. :o)