Results for search term "#nord".

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Reply on Rosai-Dorfman Disease (Sinus histiocytosis)

Hi @roger191, you'll notice that I merged the 2 discussions that you started into one discussion that appears in both the Autoimmune Diseases group and the Blood Cancers & Disorders group simultaneously. Given that Rosai-Dorfman Disease is rare, it will be helpful to have all the messages [...]

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Reply on Cleaning your CPAP mask.

Hello @kentyunker, I was interested in your mentioning the diagnosis of IMB. As a result, I did a little research and found this information on NORD (National Organization for Rare Disorders), https://rarediseases.org/rare-diseases/sporadic-inclusion-body-myositis/ I decided to post the link for anyone else who might find this interesting. Thank you [...]

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Reply on Thymic Tumors

Hello @anotherfinemass Along with @johnbishop and @colleenyoung, I'd like to welcome you. As one who has had three surgeries for a rare form of cancer, Neuroendocrine Tumors (NET), I can at least appreciate your frustration with finding a doctor who specializes [...]

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Reply on SBO due to Adhesion

Hello All: A day or so ago, a member, @nancybev, mentioned idiopathic bowel obstruction where the symptoms of bowel obstruction are present, but there are no diagnostic findings on scans, etc. As I found this intriguing, I did a search and came up with an article on the [...]

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Reply on MS?

@czechmate Well, you asked for it. I have a lot of suggestions for you. First, get ALNYLAM.com on line. Read their stuff on Amyloidosis. They have a program where they will actually send a kit to a doctor who has screwed up your diagnosis. It says something [...]

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Reply on Empty Sella Syndrome

Hi @jimmyj and @rcraftlady welcome to Connect and the ESS discussion group. Jimmy, In reading about empty sella syndrome on the NORD site https://rarediseases.org/rare-diseases/empty-sella-syndrome/ I didn’t see memory issues as one of the signs or symptoms of ESS. However, fatigue can certainly lead [...]

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Reply on Primary lateral sclerosis (PLS) treatment

Welcome to Connect, @johnny17 I'm connecting you @lorenamaher, who is living with primary lateral sclerosis (PLS). Are you familiar with NORD (National Organization for Rare Diseases)? Here is their information page on PLS. At the bottom of the page are current investigational therapies [...]

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Reply on Parsonage turner syndrome *

Hi @ckbray, I'm sorry to hear about your son, and wanted to mention some information I found on NORD (National Organization for Rare Diseases). Unfortunately the exact or underlying cause of PTS is not fully understood, and it is believed that most cases result from an [...]

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Reply on Chiari Malformation type 1

Hi @mfann, welcome to Connect. My apologies for the delayed response. Somehow your message slipped by. I can't imagine the stress and frustration while trying to find answers to your son's medical issues. I personally don't have experience with Chiari, but hope that you will find [...]

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Reply on Stiff Person Syndrome

Hi @pollyanna777 You will be able to post links after being an active member of Connect for a few days. Preventing first time members from posting a link is a security measure to prevent spammers. It is important to us to keep Connect spam free. I [...]

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Reply on Time to give up?

@keeptrying Oh, I don't think it's all that bad. That is about where I am. That and reading and responding to email. Of course, if I did not have my disorders, that is about where I would be anyway at 78. But I am still looking outward. [...]

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Reply on Stiff Person Syndrome

@maritakelly Hello Marita, Welcome to Mayo Connect! Your sister is so fortunate to have you as her advocate. I found some information on the NORD website, here is the link, https://rarediseases.org/rare-diseases/stiff-person-syndrome/ A few other members have posted about this disorder as well. I will tag [...]

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Reply on Mesenteric Panniculitis or Sclerosing Mesenteritis

Thank you @hopeful33250 (Teresa) and Welcome @fernandoparce (Fernando). First of all let me assure you that you can have mesenteric panniculitis and not have cancer. Sorry to hear you are having the typical difficulty getting good information from your medical professionals. I have [...]

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Reply on Mesenteric Panniculitis or Sclerosing Mesenteritis

Hello @fernandoparce. I see that this is your first post at Mayo Connect - welcome! While I don't have Mesenteric Panniculitis I'd like to introduce you to @vdouglas, a volunteer mentor here at Mayo Connect as well as @kanaazpereira, Mayo [...]

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Reply on Chronic Pain members - Welcome, please introduce yourself

Hello @lightbender I would like to add my welcome to Mayo Connect! As Jim, @jimhd mentioned, many of our members at Mayo Connect have discussed the problem of chronic pain and how it affects us both physically and emotionally. For our members who [...]

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Reply on Mesenteric Panniculitis - I can't be the only one...

@vdouglas - thank you for getting back in touch with me!! I'll definitely be checking out the forum you mentioned above. I've read (extensively) everything on the NORD. That's what I've tried sticking to primarily - that information and that found here from Mayo. I wish Mayo [...]

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Reply on Lennox-Gastaut syndrome (LGS) diagnosis

Hello @davesmo04, Welcome to Connect. I'm sorry to hear about your son, and so glad you've joined this group. Here's some information about Lennox-Gastaut syndrome (LGS) from the National Organization for Rare Disorders (NORD): https://rarediseases.org/rare-diseases/lennox-gastaut-syndrome/ And, on this Mayo Clinic webpage, you can also read about [...]