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No New Posts WELCOME to Mastocytosis Society Canada Support Forum

General board information

Moderator: Shawna

4 9 Mastocytosis Society Canada ONLINE
by Carrie
Nov 9, 2012 8:10:50 GMT -5
No New Posts EMAIL support@mastocytosis.ca TO REGISTER

Mandatory Registration Procedure

Moderator: Shawna

5 10 Problems logging in after registering
by Carrie
Apr 3, 2013 22:35:16 GMT -5
No New Posts DONATE or JOIN via PayPal & Fundraisers!

4 19 MSC Fundraising Projects!! Deals, offers, etc.
by Carrie
Mar 15, 2013 20:37:19 GMT -5

How to Navigate the forum, Glossary, etc.

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No New Posts What to read first

Guiding new members to most important information first

Moderator: Shawna

3 10
No New Posts How To: Search, Post, Share Links, etc.

Forum navigation

10 45
No New Posts Glossary of terms

Medical terms defined

1 5

Mastocytosis & Mast Cell Disorders

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No New Posts Mastocytosis & Mast Cell Disorders

47 531
No New Posts Discussions: Symptoms, Triggers and Test Results

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75 640
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19 202
No New Posts Medications, Treatments & Related News

97 695
No New Posts Medical & Financial Assistance Programs in Canada

Medical Plans per province, Financial Assistance Programs (Banking, Insurance and Government)

Sub-board: Medication & Disability income programs per Province/Territory

28 97
No New Posts Medical Research

39 555
No New Posts Medical Researchers

4 18

**EMERGENCY MEDICAL PROTOCOLS**

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No New Posts Anaphylaxis

Anaphylaxis

23 248
No New Posts Diagnostics, Surgeries & Medical Tests

Diagnostics, Surgeries & medical tests

25 207
No New Posts Exercise and Physical Fitness

Exercise and physical fitness

4 15

Support Network

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No New Posts Meetings & Mastocytosis Society Canada

Local, National and International events

28 298
No New Posts POLLS/SURVEYS

Polls/Surveys of medications, tests, diagnoses, etc.

7 25
No New Posts Healthcare in Canada

General news, sharing thoughts and experiences about our healthcare system

Sub-board: Healthcare News by Province or Territory

47 225
No New Posts Emotional Support, Venting, Laughing, Whatever!

41 237
No New Posts Introduce yourself here and share your story

Introduce yourself, share your story from symptoms to diagnosis

125 2,546
No New Posts Life after diagnosis

Share how your life is after diagnosis. All about living daily with mastocytosis and mast cell disorders

60 648
No New Posts Our Happy Place :-)

Share the happy!! Fun, music, uplifting stuff, etc.

9 43
No New Posts HOT TOPICS

A complete free zone to talk about anything. *Not Moderated by anyone*

20 201
No New Posts Patient to Patient Direct Support

Members offering direct patient support to others by email and/or phone

2 8
No New Posts Parent to Parent Connections

Parents helping Parents of children with mastocytosis

26 305
No New Posts Kids Zone!

A place for children of all ages to share, have fun and correspond with other kids.

1 133
No New Posts Caregivers Corner

A place for caregivers, friends and loved ones to support each other.

7 46
No New Posts Food Safety Issues & Special Diets for mast cell disorders

foods

49 211
No New Posts Natural Health Treatment

40 168
No New Posts Exercise & Maintaining Health

17 38
No New Posts Environment & Toxins

10 33
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Homemade and commercial remedies

18 143
No New Posts Clothing, Bedding,Home support items

3 7
No New Posts Books/Videos/Articles

For medicine, education, research AND help, hope and inspiration

28 40
No New Posts Movie, TV, Radio recommendations

Movie, TV, Radio programs

19 38

Other

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No New Posts Rare Disease Board

Announcements, articles and information specific to Rare Diseases and Disorders

3 5
No New Posts Links

31 45

Legend

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Forum Information & Statistics

Board Statistics
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Last Updated: Problems logging in after registering by Carrie (Apr 3, 2013 22:35:16 GMT -5)
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Welcome to Mastocytosis Society Canada support forum! Say hello and leave us messages here.....
Samson1484: I've been suffering from Mastocytosis for the past 16 years without a diagnosis despite having seen over 70 doctors. My worse symptom occurs whenever I eat/drink anything. Simple food contact on oral mucosa induces an intense systemic allergic-like reactio Sept 16, 2014 19:23:13 GMT -5
Samson1484: does anybody know of a specialist in Toronto, Ontario that recognizes or is open to a possible diagnosis and treatment of Mast cell disorders? Sept 16, 2014 19:25:08 GMT -5
sonamgirl: Hello: A quick question. I'm in the middle of being diagnosed and going for a skin biopsy in mid October. Should I start my prescription strength reactine and singulaire prior to seeing the dermatologist? Will these medications affect the results? Oct 1, 2014 10:36:05 GMT -5
tferguso: This question is for those with MCAD. I have a normal skin biopsy and normal tryptase, I need to know if any of you have found that the severity of your reactions and the number of triggers has increased over time? Mine have and I am concerned about it. Oct 20, 2014 8:05:07 GMT -5
kathy59: I just got my bone marrow biopsy results and have been diagnosed with systemic masto. My dermatologist had started me on reactine and doxeprin but the hematologist took me off doxeprin and told me to start zantac. Does this sound like right treatment? Nov 6, 2014 10:05:50 GMT -5
maggie122: Anyone else having problems with there eyes? Mine are extremely sore, dry and there is a small lump on eyelid. Nov 10, 2014 4:13:26 GMT -5
crimsonbird: I hope in the sharing of my journey with mastocytosis that you will feel supported in your journey. I was just diagnosed with mastocytosis through a skin biopsy. I am awaiting a bone marrow biopsy. I have peripheral neuropathy from the condition. Nov 10, 2014 13:39:41 GMT -5
truthseeker: Dr. Jason Lee thinks I have negative serum tryptase mastocytosis. Why is he so concerned? Tells me it is an extremely rare form of mastocytosis. Battling pneumonia for fourth time. On antibiotic. Very weak. Thoughts on things to do to help recover? Nov 18, 2014 7:43:34 GMT -5 *
jessicaq: Maggie122 My 6 yr old son gets very sore eyes too. Not sure if it is masto related or not. But I'm thinking it is. Nov 26, 2014 20:37:48 GMT -5
Peggy: I am beginning to wonder if my daughter has mastocytosis. Is its a common cause for burning tongue and chemical food intolerances or does a person have to have a lot of other symptoms to have this condition. I know she is allergic to her histamine. Dec 10, 2014 21:21:07 GMT -5
SarahSmile: Does anyone know of a doctor familiar with mast cell activation who is in Edmonton or would be willing to consult with a doctor here? Please, I've been repeatedly hospitalized, bedridden and deteriorating for over 14 months now and desperately need help!! Dec 18, 2014 18:10:45 GMT -5
melissa4142: I have been dealing with a chronic mucusy sinus and coughing up mucus now for the past 3 weeks. It is mild to moderate but there has been a couple of times when exposed to chemicals it got extremely worse. Does MCAS cause these kinds of problems? Dec 19, 2014 10:07:26 GMT -5
sue2: I'm unalbe to tolerate vegetable oils. Has anyone tried rendered duck fat? I'm thinking that might fly (pardon the pun). Jan 30, 2015 10:33:52 GMT -5
KT: I am looking for help. Navigating this alone and unsure of where to get the proper tests and medical support.... Feb 2, 2015 23:05:40 GMT -5
kathy59: SarahSmile - I live in Edmonton and I have Indolent systemic masto - the hematologist I see is Dr. Minakshi Taparia. She is located in the Edmonton Clinic across from the U of A hospital . You may need a referral to her - her number is 780-407-1584. Feb 16, 2015 10:56:18 GMT -5
kathy59: Is exhaustion a sign of masto? I feel so tired I can hardly move Feb 16, 2015 10:58:51 GMT -5
klynn: If I am logged in where do I post a question? There are so many subsections? Feb 25, 2015 20:36:35 GMT -5
Pla: reply to Kathy59-Yes, fatigue can be a symptom of masto. Sleep quality, chronic fatigue from frequent attacks can contribute...as well if you have any other co-existing conditions. Mar 4, 2015 16:44:31 GMT -5
Pla: REPLY to jessicaq- yes eye involvement is a feature. See our medication list- many people suffer from dry eyes (I do!). There are a couple of choices depending on the issue, as always consult with a medical professional. Mar 4, 2015 16:51:27 GMT -5
kathy59: I have cutenous and indolent systemic masto. My dermatologist said I should be on doxepin at bedtime, hematologist says no...not until I get worse, my family Dr said I should be on it now 6 months later she said to go off it. Help! Apr 23, 2015 19:50:00 GMT -5
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