Collagenous Gastritis

Posted by e @epvb, Mar 27, 2017

I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.

@kellye5

@johnbishop Thank you. I know I am beginning to panic. We have purchased real winter weather clothing as SC has no real cold compared to MN…the cold actually scares me!
I will research all of these sites tomorrow. I truly appreciate your time.

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@kellye5 , we travelled to Rochester in early January when the high was 5 the entire trip. We are from Florida so I understand your concerns about clothing. Honestly, we were too warm most of the time we were there. The clinic was hot and the hotels are very warm as well. The subway area that connects the hotels with the clinic was so warm we found ourselves walking outside some of the time. I found we didn’t wear most of the clothes that we brought. Best of luck to you.

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@kellye5

@johnbishop Thank you. I know I am beginning to panic. We have purchased real winter weather clothing as SC has no real cold compared to MN…the cold actually scares me!
I will research all of these sites tomorrow. I truly appreciate your time.

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@epvb That is comforting! I appreciate the information. I will layer up;)

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Does anyone have Dr. Joseph Murray email, or contact information? I live in upstate NY, 20 years old and in college- so I don’t think I can get to Mayo Clinic because financial reasons… But does Dr. Murray take emails or phone calls? Any recommendations?

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@kellye5

It was 70 today…oh my!

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This site does not seem to alert member if PM has been received into their box. I found a PM by chance that had been sent to me some time ago.
I advise other members to check their PM box regularly.

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@kellye5

@johnbishop Thank you. I know I am beginning to panic. We have purchased real winter weather clothing as SC has no real cold compared to MN…the cold actually scares me!
I will research all of these sites tomorrow. I truly appreciate your time.

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Hi @kellye5,

I completely understand your concerns – we moved from Charleston SC to Rochester, MN a few years ago! So when I read “Hey y”all” it brought back a flood of memories. And you are correct in stating that “SC has no real cold compared to MN…” but don’t let the cold weather deter you – you are going to be in good hands here.

@epvb shared some great tips (thank you), in that the Clinic has an extensive network of underground walkways or subways and also some overhead walkways, or skyways. These connect all Mayo Clinic buildings, and to hotels, shopping, (winter wear is on sale:)), restaurants, the Art Center, library, banks, etc. There are clear signs throughout, and everything is wheelchair accessible; you really don’t have to step out if you don’t wish to…I believe SC got more than its share of snow this year, and it looks no different in the Palmetto State anyway!

If you are flying directly into Rochester International Airport, (RST) you could arrange for a shuttle (thanks for the links, @johnbishop), or use Uber or Lyft as they are permitted to operate from the airport. Unfortunately, I wouldn’t recommend Yellow Cab Taxi service from RST as they are rather pricey.

@kellye5, please keep us updated about your son’s progress, as and when you are able to; wishing him all success. Y’all take care now:)

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Hi @jng123,

Unfortunately we aren’t able to give a physician’s contact information on Connect, but in the meantime, I sincerely encourage you to share your concerns with the Connect community; perhaps fellow members can help answer some questions? A few have consulted or will be consulting with Dr. Murray, and I’m confident they would be happy to share their insights.
May I ask, what concerns you the most @jng123?

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@kellye5

@johnbishop Thank you. I know I am beginning to panic. We have purchased real winter weather clothing as SC has no real cold compared to MN…the cold actually scares me!
I will research all of these sites tomorrow. I truly appreciate your time.

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@kanaazpereira Thanks. Charleston got the gorgeous snow….I am in Cola. so 2 flakes shut us right down! I appreciate the support here otherwise I would be lost. Will stay in touch.

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@kellye5

It was 70 today…oh my!

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Hello @mindi, when someone sends you a Private Message (PM), the Private Message is sent to your personal email address. This is the same way you get all Mayo Connect notifications for groups, discussions and people you are following. Also, you will see a small red new message indicator above the email icon next to your profile icon at the top right of the screen. The only way I know that you can stop notifications are in your Account Settings under Email Notifications. At the bottom there is a Disable all email notifications option. You can find more information in Get Started on Connect topic here:
https://connect.mayoclinic.org/get-started-on-connect/
Another reason you might have missed it is your email program. The message may have went into a Spam or Junk folder by mistake.

John

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@kellye5

It was 70 today…oh my!

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Thanks John but I don’t seem to receive emails alerting me of PM.

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@kellye5

It was 70 today…oh my!

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Hi Mindi (@mindi) – I sent you a test PM to see if you get it in your personal email. Can you let me know if you receive it or not?

Also, look at the top of your Connect page at the small mail icon to see if you see a red indicator for a new message.

Thanks,
John

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@kanaazpereira

Hi @jng123,

Unfortunately we aren’t able to give a physician’s contact information on Connect, but in the meantime, I sincerely encourage you to share your concerns with the Connect community; perhaps fellow members can help answer some questions? A few have consulted or will be consulting with Dr. Murray, and I’m confident they would be happy to share their insights.
May I ask, what concerns you the most @jng123?

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As you know how frustrating this disease is trying to find a cause and treatment… I have appointments to see a hemocrat doctor, vascular doctor ontop of already seeing gastro & endocrin doctors. I just wish there was a way to know I am not wasting my time visiting these doctors & introducing the disease to them to in the end receive blank stares and no successful help. I would love to be able to get to see Dr Murray to maybe even get on the right tract for this disease if there even is one… I just feel like I am in the dark.

Symptoms: nausea, stomach aching/ sometimes severe pain & cramping & hard bloating, acid reflux, food sensitivity to really any food depending on the day, extremly swollen ankles/feet/lower legs (occurs randomly), anemia, iron deficiency, low protein (in blood).

Thank you for reading,

Liked by kellye5

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@kanaazpereira

Hi @jng123,

Unfortunately we aren’t able to give a physician’s contact information on Connect, but in the meantime, I sincerely encourage you to share your concerns with the Connect community; perhaps fellow members can help answer some questions? A few have consulted or will be consulting with Dr. Murray, and I’m confident they would be happy to share their insights.
May I ask, what concerns you the most @jng123?

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@jng123 I am so sorry you have to go through all of that. Here, no one could recommend any one. Mayo was our best bet and only referral from our own Medical University. My son has most of the same symptoms as you are describing with chest, back pain, nausea, indigestion, bloating and food issues being prominent. Some arm pain and always cold. We are grateful to have been able to get into see Dr. Murray and his team. Call the number under digestive diseases….Good luck.

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@kanaazpereira

Hi @jng123,

Unfortunately we aren’t able to give a physician’s contact information on Connect, but in the meantime, I sincerely encourage you to share your concerns with the Connect community; perhaps fellow members can help answer some questions? A few have consulted or will be consulting with Dr. Murray, and I’m confident they would be happy to share their insights.
May I ask, what concerns you the most @jng123?

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This is exactly how I feel.Daily caring for my daughter symptoms. 
Jocelynne is turning 13 on friday
Anemia. Low Iron. Low protein
Never complains of stomach pain but at one point was blood transfusion dependent due to anemia and bone marrow issues
Joce is currently taking Promacta for platelets And since October 17th.  When she was diagnosed by her gastro dr.  Dr Sahn here in NEw York. Jocelynne takes omeprazole 40mg 1 capsule twice dailyAnd takes novaferrum125 liquid iron 5ml daily
Jocelynne is followed by her Hemotologist. And Gastrologist
And weekly visits to her Holistic Dr.
Friday is an amazing dayHappy Birthday to my fearless Jocelynne
Please all keep posting
And please send contact information. For Dr Murphy.  As well as share how your success is with the visit
Very good approach
Jamilynne Denaro

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@kanaazpereira

Hi @jng123,

Unfortunately we aren’t able to give a physician’s contact information on Connect, but in the meantime, I sincerely encourage you to share your concerns with the Connect community; perhaps fellow members can help answer some questions? A few have consulted or will be consulting with Dr. Murray, and I’m confident they would be happy to share their insights.
May I ask, what concerns you the most @jng123?

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What treatment did you receive from Dr Murray

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@kanaazpereira

Hi @jng123,

Unfortunately we aren’t able to give a physician’s contact information on Connect, but in the meantime, I sincerely encourage you to share your concerns with the Connect community; perhaps fellow members can help answer some questions? A few have consulted or will be consulting with Dr. Murray, and I’m confident they would be happy to share their insights.
May I ask, what concerns you the most @jng123?

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Thank you @kellye5 Would you recommend trying to find a way to see Dr. Murray??? Was the trip completely helpful?

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