Neurogastroenterologist Suggestions

[MissRita]

Hey ALL! Happy Sunday!

Quick question for any of you out there that might know the answer to this, I live in New York State and I’m looking for a neuroogastroenterologist. I was told in my location there aren’t any and I looked in Rochester New York and supposedly there isn’t anyone at Strong Memorial.

The only other place I can imagine would be Buffalo or Albany, but I’m not sure if anybody out there would have any ideas? I’m thinking of Johns Hopkins next and the Cleveland clinic or Yale. Any information would be greatly appreciated! Thanks everyone!

[Nitro53]

Have you tried Syracuse? They have some great hospitals.

[MissRita in reply to Nitro53]

I actually live in Syracuse and I have the best tremor guy in the business and he’s at Upstate. They have no one that does Neuro Gastro which is unbelievable because this is what I’m dealing with in terms of finding a doctor that has it as a specialty. One would think a PD team would have a neurogastrointestinal Dr but they do not.

[wifeofparky]

Strong Memorial is a center of Excellence for PD. I'm surprised they don't have any. Try going to Parkinson.org and search/ask them where to find one. Good luck

[MissRita in reply to wifeofparky]

I know they are excellent but they just don’t have anybody there that does that. I will definitely go to that website. Thanks so much.

[wifeofparky in reply to MissRita]

Centers of Excellence are hospitals that specialize in a specific disease. Strong happens to be one for PD.

[MissRita in reply to wifeofparky]

OK I’m going to reach out to them again because I have been working with a doctor up there over the last year and I’m going to see if i can get another appointment with him to see if maybe he can help me out further.

[wifeofparky in reply to MissRita]

good luck

[MissRita in reply to wifeofparky]

Thx!

[pdpatient]

MissRita, try Columbia Neurology in NYC and ask them if they have any doctor who has this specialized training. Columbia University is top notch and home to PD titans like Dr. Stanley Fahn and Dr. Pietro Mazzonni (now at Washington University, St Louis). It is a also a Center of Excellence.

I am intrigued by the type of doctor you are looking for. I didn't know that they even existed. I will have to look it up. I just see a regular gastroenterologist here at Stanford and he is very knowledgeable about Parkinson's. But he did say that when I get my first colonoscopy done (sometime after the pandemic ends 😅), I would be attended to by a team of doctors that will include a Movement Disorders Specialist!!

I felt so flattered and imagined being treated just like our "Favorite President"🤣

[Godiv in reply to pdpatient]

Pdpatient: 😂 Yes, I’m sure they’ll whisk you right into Walter Reed, give you a team of specialists, and then bow to your demand to be taken around in a limousine so you can wave at your admirers. 🤣

[MissRita in reply to Godiv]

Lmaoooo

[Godiv in reply to MissRita]

Heh! 😂

[pdpatient in reply to Godiv]

LoL Godiv. You made my day😇. I can't wait for our "favorite President" to become a private citizen "someday" and see how the good doctors treat him after being insulted enmasse as idiots and money hungry cheating frauds!

It may infact be unwise to have a "team of 14 doctors" around himself at that time who might be literally chomping at the bit, salivating at what lies ahead with only the venerable Hippocrates standing between them😊😀🤣🤣.

Oh my God, I am laughing so hard at the image that my wife is getting concerned😆

[Godiv in reply to pdpatient]

🤣🤣😂😂 i’m so glad you liked it! That’s funny about the Hippocratic oath! Now you have me laughing. 😀🤣

[Despe in reply to pdpatient]

Please leave out the POLITICS! This is not a site to express your personal likes/dislikes for the President. . .like it or not he is YOUR President!

[pdpatient in reply to Despe]

Ok mam

[MissRita in reply to pdpatient]

Lmaoooo

Thanks for the information. I realize that I needed a NeuroGastro a while back because a lot of my symptoms are coming from the gut and a lot of things just don’t make sense. I’ve also done a ton of research on the fact that with Parkinson’s it can really affect the enteric nerves and the Vasal Vega nerve and that’s where I seem to have a lot of the problems. I did have an upper barium swallow a month or so ago and nothing seems to be wrong there and nothing is restricting or having any kinds of issues which is a blessing. It just seems to be a situation where after I eat and my food starts to digest that’s when the body starts to tremor more.

[Godiv]

MissRita, Good luck with your search. I hope you’re able to find someone you like and feel comfortable with.

[MarionP]

I believe there is one at Johns Hopkins

[MissRita in reply to MarionP]

I thought there might be. Any information on that?

[MarionP in reply to MissRita]

I think it is up to you to take it from there.

[MissRita]

One other thing that seems awfully interesting - have I mentioned the hunger? I am constantly hungry like there’s a blood sugar issue which I have read is very common as well with some Parkinson’s patients.

[Marcia123 in reply to MissRita]

I am always hungry and have lost 13 lbs.. poop after every meal too

[MissRita in reply to Marcia123]

Wow!! You’re lucky!! 🙏🏼

[Hidden]

Ask your PCP who will have a directory on line.

[MissRita in reply to Hidden]

Thanks for the feedback. Unfortunately my PCP always tells me go to a gastroenterologist and for me I love my local gastroenterologist but she has no experience in PD nor NeuroGastro, so I am now in the hunt!

[Despe]

nyulangone.org/doctors/spec...

Just search the web.

[MissRita in reply to Despe]

These are great but unfortunately none of them work with clients that have Parkinson’s.

[enjoy2013]

Hello,

I am based in Europe but maybe I can help. You were saying that you had tremor after meals, is that correct? Is it a off period? So this would be interférence between food and Ldopa absorption. So the problem is with proteins - they compete with Ldopa for the transporters at the level of the gut absorption and transport through the BBB. Fat will slow GI transit so the usual advise is to eat as soon as you are on. Otherwise the usual advise to PEPSI is to eat as many proteins as possible

[MissRita in reply to enjoy2013]

Pepsi? Thank you so much for the feedback. Just as an FYI I do not take any medication from the doctors and I take l-dopa from Nutra Vita and I also take three 1/8 of a teaspoon of L tyrosine first to coat the stomach just in case there’s a chance of vomiting. I used to vomit a lot and that has gotten better. Interestingly enough last night I didn’t take any of the l-dopa because towards the end of every day no matter how much I take it tends to wear off so instead I ate a very large ravioli meal with Parmesan cheese and spaghetti sauce. It was incredible how much the symptoms subsided although it took a toll on my body because my muscles started to ache a little bit and my stomach and digestive system was having a hard time digesting what I was eating. Is that what you mean by not eating protein or eating protein at different times?

I am truly finding more and more correlation between what I eat, how much I eat and when I eat in terms of how my symptoms are. Very very confusing, conflicting, and frustrating!

[enjoy2013]

Hi again,

Instead of PEPSI I meant people with PD (are advised not to eat many proteins, but eat enough, to maintain muscular mass).

It doesn't matter where you get your ldopa, it is ldopa. So the interactions I described in my previous message are the same. I suggest you try to check for the different foods you plan to eat their nutritional content and monitor how your symptoms react.

Also stress (through gastritis) can interfere with absorption of ldopa.

Cheers

[simonasays]

Both NYU and NY Presbyterian have neuro gastroenterologists in NYC. You can search for a specialist on their site.

[MissRita in reply to simonasays]

Thank you so much! I am definitely going to look into that.