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granulomatous mastitis User Group
Survey
About This Group:

This group is intended as a meeting place and forum for those who have been diagnosed with granulomatous mastitis ('GM') or idiopathic granulomatous mastitis ('IGM'). I think one of the greatest challenges with this disease is its rarity and the associated lack of understanding in the medical community. But we can share here - and hopefully make the healing process a little easier for each other.

Founded by JoJo45 on January 17, 2010
242 members
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Survey

Some time ago I suggestes a survey. Below are some questions I thought of. If you copy/paste the questions, and then answer line by line (sort of like a forward), then we can all see the responses. If any knows of a doctor who would be interested in our results, share this forum with them. We need experts (as side from us) on our condition.

Stay positve and strong!

1. Which symptoms you experienced?
Red streaks
Swelling
Inflammation
Pain
Redness
Lumps
Ruptured skin
Drainage
Other:

2. When did IGM start for you?

3. How old were you when IGM began?

4. Did you have children?

5. Did you breastfeed?

6. How long did you breastfeed? (total months)

7. Did use a breast pump?

8. How many months/years after stopping breastfeeding did you experience your first symptoms of IGM?

9. Select the doctors/services involved with your care.
Family Practice Doctor
Breast Specialist
Wound Care
Pathologist
Rheumatologist
Infectious Disease
Oncologist
Nutritionist
Other: ________________________

10. Did your doctor have experience with IGM?

11. Were you misdiagnosed?

12. Were you diagnosed with abscess?

13. Were you treated for abscess? Were you lanced/packed?

14. Were you diagnosed with cysts?

15. Did your labs return with “sterile” or “negative for bacteria” results?

16. Was the fluid draining diagnosed as serous fluid (healing protein fluid)?

17. Did your doctor test prolactin levels?

18. Was your prolactin level…low, normal, high

19. What medication have you taken?

20. Did a medication cure your disease?

21. Did you have surgery?

22. What was the name of the surgery/procedure the doctor preformed?

23. Did you have a reoccurrence any time post-surgery?

24. Did you have imaging done?

25. Did you use a wound care vac?

26. Did a member of your medical care team make recommendations to change your diet?

27. If so, what changes were recommended?

28. Have you used natural remedies to manage your IGM?

29. Do you have other chronic diseases?

30. What is your nationality?

31. Is there anything else you would to share of your disease?
17 Comments
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1. Which symptoms you experienced? ALL LISTED
Red streaks
Swelling
Inflammation
Pain
Redness
Lumps
Ruptured skin
Drainage

2. When did IGM start for you?  AUGUST 2011

3. How old were you when IGM began?    34

4. Did you have children?   1

5. Did you breastfeed?   YES

6. How long did you breastfeed? (total months)    6 MONTHS

7. Did use a breast pump?   YES

8. How many months/years after stopping breastfeeding did you experience your first symptoms of IGM?     5.5 YEARS

9. Select the doctors/services involved with your care.
Family Practice Doctor
Breast Specialist
Wound Care
Pathologist
Rheumatologist
Infectious Disease


10. Did your doctor have experience with IGM?  NO

11. Were you misdiagnosed?   YES

12. Were you diagnosed with abscess?   YES

13. Were you treated for abscess? Were you lanced/packed?  YES

14. Were you diagnosed with cysts?  NO

15. Did your labs return with “sterile” or “negative for bacteria” results?  YES

16. Was the fluid draining diagnosed as serous fluid (healing protein fluid)?   YES

17. Did your doctor test prolactin levels?   YES

18. Was your prolactin level…low, normal, high   NORMAL

19. What medication have you taken?  SEVERAL ANTIBOTICS, STEROIDS (20 WEEKS)

20. Did a medication cure your disease?  ANTIBOTICS - NO
STERIODS - YES AND NO - MASKED THE SYMPTONS, BUT PAIN FREE/REDUCE THE INFLAMMATION

21. Did you have surgery?   YES

22. What was the name of the surgery/procedure the doctor preformed?  ABCESS (abscess) I & D

23. Did you have a reoccurrence any time post-surgery?  YES

24. Did you have imaging done? YES, ULTRASOUND, MAMMOGRAM & MRI

25. Did you use a wound care vac?  YES, DRAINED AND WAS HELPFUL

26. Did a member of your medical care team make recommendations to change your diet?   NO

27. If so, what changes were recommended? RESEARCHED FOR MYSELF.

28. Have you used natural remedies to manage your IGM?  ALOE VERA JUICE & POMEGRANATE CONCENTRATE

29. Do you have other chronic diseases?  NO

30. What is your nationality?  CANADIAN (LIVING IN USA)

31. Is there anything else you would to share of your disease?  LASTED 14 MONTHS. SCARS ARE SLOWLY HEALING.
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1. Which symptoms you experienced? ALL LISTED + JOINT PAIN AND NIGHT SWEATS.
Red streaks
Swelling
Inflammation
Pain
Redness
Lumps
Ruptured skin
Drainage

2. When did IGM start for you?  July 2012

3. How old were you when IGM began?    36

4. Did you have children?   1

5. Did you breastfeed?   YES

6. How long did you breastfeed? (total months)    8 MONTHS

7. Did use a breast pump?   YES

8. How many months/years after stopping breastfeeding did you experience your first symptoms of IGM?     3 YEARS

9. Select the doctors/services involved with your care.
Breast Specialist
Pathologist
Gynecologist

10. Did your doctor have experience with IGM?  NO

11. Were you misdiagnosed?   YES

12. Were you diagnosed with abscess?   YES

13. Were you treated for abscess? Were you lanced/packed?  NO

14. Were you diagnosed with cysts?  NO

15. Did your labs return with “sterile” or “negative for bacteria” results?  YES

16. Was the fluid draining diagnosed as serous fluid (healing protein fluid)?   YES

17. Did your doctor test prolactin levels?   YES

18. Was your prolactin level…low, normal, high   NORMAL

19. What medication have you taken?  SEVERAL ANTIBOTICS, STEROIDS (20 WEEKS)

20. Did a medication cure your disease?  ANTIBOTICS DIDN’T WORK
STERIODS - MASKED THE SYMPTONS…DIDN’T WORK.

21. Did you have surgery?   NO

22. What was the name of the surgery/procedure the doctor preformed?  N/A

23. Did you have a reoccurrence any time post-surgery?  N/A

24. Did you have imaging done? ULTRASOUND, MAMMOGRAM & MRI

25. Did you use a wound care vac?  YES

26. Did a member of your medical care team make recommendations to change your diet?   NO

27. If so, what changes were recommended? NONE, EXCEPT QUIT SMOKING

28. Have you used natural remedies to manage your IGM?  ALOE VERA FROM PLANT DIRECTLY IN MY BREAST/ BEE VENOM

29. Do you have other chronic diseases?  NO

30. What is your nationality?  URUGUAYAN (SOUTH AMERICA)

31. Is there anything else you would to share of your disease? I ALSO HAD JOINT PAIN, AND AFTER BEE VENOM IS GONE!

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May I ask why you ladies needed a wound care vac?  And who used it on you?  How many times did you use it?
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The wound care clinic I was seeing recommended the vac. I used the wound care vac for 3 weeks. It was on me for 24/7. I would need to visit the wound care clinc 3 times per week for a new sponge and changing the dressings.

It did promote healing after my surgery. My incision was 4 cm deep and 6 cm wide and the goal was to heal me up as fast as possible to prevent  more re-occurrences. It work when I was using it, but once I was done with it, the goop pockets showed up again.

Funny thing with a wound care vac is you sound like you are perkulating like a coffee pot. I hide my vac under a sweater, so no one new I had it. Seeing people looking around trying to figure out where the sound was coming from was funny. Just so humour with the disease. :)
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OOPS! my answer about the wound care vac should read NO! sorry! went over the rest of the answers and are OK.
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That made me laugh, thanks!  Ok I've never had an incision that big so I guess that's why I never used it. I will fill out this survey after I see my breast specialist and get diagnosed.  Thanks!
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I can finally answer this questionnaire now that I have been officially diagnosed with GM today!


1. Which symptoms you experienced?
Swelling
Inflammation
Pain
Redness
Hard Mass
Drainage
Itching

2. When did IGM start for you? DECEMBER 24, 2012

3. How old were you when IGM began? 30 YRS OLD

4. Did you have children?  YES 2 CHILDREN (6 & 4 yrs old)

5. Did you breastfeed? YES, BOTH CHILDREN

6. How long did you breastfeed? (total months) 12 MONTHS

7. Did use a breast pump?  YES

8. How many months/years after stopping breastfeeding did you experience your first symptoms of IGM?     3 YEARS

9. Select the doctors/services involved with your care.
Family Practice Doctor
Breast Specialist
Pathologist
Infectious Disease
Oncologist
Other: SURGEON AND RADIOLOGIST

10. Did your doctor have experience with IGM? THE ONLY DOCTOR THAT HAD EXPERIENCE WITH GM WAS MY RADIOLOGIST, HE SPECIALIZED IN BREAST IMAGING AND HAD EXTENSIVE EXPERIENCE AND TRAINING

11. Were you misdiagnosed? SOMEWHAT.  DIAGNOSED WITH SIMPLY MASTITIS

12. Were you diagnosed with abscess? YES

13. Were you treated for abscess? Were you lanced/packed?  YES LANCED AND DRAINED, PACKED ONLY FOR 24 HOURS

14. Were you diagnosed with cysts?  NO

15. Did your labs return with “sterile” or “negative for bacteria” results?  YES

16. Was the fluid draining diagnosed as serous fluid (healing protein fluid)? NOT SURE?

17. Did your doctor test prolactin levels? NOT SPECIFICALLY

18. Was your prolactin level…low, normal, high

19. What medication have you taken? CLINDAMYCIN, BACTRIM, RIFAMPIN, PREDNISONE, CIPRO, IBUPROFEN

20. Did a medication cure your disease? NOT CURE

21. Did you have surgery? I HAD AN INCISION AND DRAINAGE SURGERY TO REMOVE A LARGE AMOUNT OF PUS, THE REST OF MY I&D WERE DONE IN OFFICE.

22. What was the name of the surgery/procedure the doctor preformed? JUT I&D

23. Did you have a reoccurrence any time post-surgery? YES

24. Did you have imaging done? YES, SEVERAL ULTRASOUNDS

25. Did you use a wound care vac? NO

26. Did a member of your medical care team make recommendations to change your diet?  NO

27. If so, what changes were recommended?

28. Have you used natural remedies to manage your IGM?   YES I CURRENTLY AM

29. Do you have other chronic diseases? NO

30. What is your nationality?  FILIPINO, HAWAIIAN, PORTUGUESE, CAUCASIAN AND NATIVE AMERICAN

31. Is there anything else you would to share of your disease? NOT AT THIS TIME
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Yes I have recently being diagnosed with GM too  and want to share with you all.

1. Which symptoms you experienced? ALL LISTED
Red streaks
Swelling
Inflammation
Pain
Redness
Lumps
Ruptured skin
Drainage

2. When did IGM start for you?  Feb 2013

3. How old were you when IGM began?    32

4. Did you have children?   1

5. Did you breastfeed?   YES

6. How long did you breastfeed? (total months)    12 MONTHS

7. Did use a breast pump?   YES

8. How many months/years after stopping breastfeeding did you experience your first symptoms of IGM?     4 YEARS

9. Select the doctors/services involved with your care.
General Practitioner
Breast Specialist
Breast Oncologist
Pathologist

10. Did your doctor have experience with IGM?  NO

11. Were you misdiagnosed?   Initially everybody said i I have MASTITIS but could not diagnose GM. In fact all were thinking i have IBC or Breast TB.

12. Were you diagnosed with abscess? Yes  Later on after 3rd Ultrasound

13. Were you treated for abscess? Were you lanced/packed?  YES - 1 time

14. Were you diagnosed with cysts?  NO

15. Did your labs return with “sterile” or “negative for bacteria” results?  YES

16. Was the fluid draining diagnosed as serous fluid (healing protein fluid)?   NO

17. Did your doctor test prolactin levels?   NO

18. Was your prolactin level…low, normal, high   Dnt Know

19. What medication have you taken?  4 different types ANTIBOTICS, IV Antibiotics

20. Did a medication cure your disease?  ANTIBOTICS - NO

21. Did you have surgery?   NO

22. What was the name of the surgery/procedure the doctor preformed?  Needle drainage

23. Did you have a reoccurrence any time post-surgery?  Didn't have surgery yet

24. Did you have imaging done? YES, ULTRASOUND, MAMMOGRAM & BIOPSY

25. Did you use a wound care vac?  NO

26. Did a member of your medical care team make recommendations to change your diet?   NO

27. If so, what changes were recommended? Nobody knows anything except 1 doc who said it can be GM but he is not sure about treatment

28. Have you used natural remedies to manage your IGM?  Not yet but yes i'm thinking about it. what ever can cure me from this pain

29. Do you have other chronic diseases?  NO

30. What is your nationality?  Indian (Lived in USA for almost all my life and now moved to Sydney for family)

31. Is there anything else you would to share of your disease?  Still looking for the treatment.
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1. Which symptoms you experienced?

Swelling
Inflammation
Pain
Redness
Lumps
Ruptured skin
Drainage
  

2. When did IGM start for you?  2009

3. How old were you when IGM began? 52

4. Did you have children?  3

5. Did you breastfeed?  yes

6. How long did you breastfeed? (total months) 6mos, 9mos, 13mos

7. Did use a breast pump?  yes

8. How many months/years after stopping breastfeeding did you experience your first symptoms of IGM?  7

9. Select the doctors/services involved with your care.
Family Practice Doctor
Breast Specialist
Wound Care
Rheumatologist


10. Did your doctor have experience with IGM?  no

11. Were you misdiagnosed?  no

12. Were you diagnosed with abscess?  no

13. Were you treated for abscess? Were you lanced/packed? just lanced

14. Were you diagnosed with cysts? no, but my primary care doctor refers to it that way now

15. Did your labs return with “sterile” or “negative for bacteria” results?  yes

16. Was the fluid draining diagnosed as serous fluid (healing protein fluid)?  no

17. Did your doctor test prolactin levels?  no

18. Was your prolactin level…low, normal, high  -  high in the past; not tested at this time

19. What medication have you taken? antibiotic, prednisone, methotrexate

20. Did a medication cure your disease? helped, not cured

21. Did you have surgery?  no


24. Did you have imaging done?  ??? sonograms

25. Did you use a wound care vac?  no

26. Did a member of your medical care team make recommendations to change your diet?  no


28. Have you used natural remedies to manage your IGM? honey, clay

29. Do you have other chronic diseases?  no

30. What is your nationality?   USA

31. Is there anything else you would to share of your disease? I cured myself with clay
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Thank you to everyone who has responded. This is great information for us.
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4628530_tn?1369112686
1. Which symptoms you experienced? ALL EXCEPT FOR RED STREAKS
Red streaks
Swelling
Inflammation
Pain
Redness
Lumps
Ruptured skin
Drainage
Other:

2. When did IGM start for you? NOV 2012

3. How old were you when IGM began? 33

4. Did you have children? 4 YEAR OLD, AND CURRENTLY 8 MTHS PREGNANT

5. Did you breastfeed? YES

6. How long did you breastfeed? (total months) 10 MONTHS

7. Did use a breast pump? YES

8. How many months/years after stopping breastfeeding did you experience your first symptoms of IGM? 3 YEARS

9. Select the doctors/services involved with your care.
Breast Specialist
Rheumatologist (WAITING FOR REFERRAL)

Other: MIDWIFE, RADIOLOGISTS, AND BREAST SURGEON

10. Did your doctor have experience with IGM? ONCE BEFORE

11. Were you misdiagnosed? YES. FIRST, GENERAL MASTITIS DUE TO PREGNANCY HORMONES

12. Were you diagnosed with abscess? YES

13. Were you treated for abscess? Were you lanced/packed? YES AND YES

14. Were you diagnosed with cysts? NO

15. Did your labs return with “sterile” or “negative for bacteria” results? YES

16. Was the fluid draining diagnosed as serous fluid (healing protein fluid)? NOT SURE

17. Did your doctor test prolactin levels? NOT SURE

18. Was your prolactin level…low, normal, high NOT SURE

19. What medication have you taken? 2 TYPES OF ANTIBIOTICS, PLUS CLYNDIMYACIN, PERCOCET FOR LANCING PAIN, TYLENOL, AND IBUPROFEN

20. Did a medication cure your disease? NO

21. Did you have surgery? NO

22. What was the name of the surgery/procedure the doctor preformed?

23. Did you have a reoccurrence any time post-surgery?

24. Did you have imaging done? YES

25. Did you use a wound care vac? NO

26. Did a member of your medical care team make recommendations to change your diet? NO

27. If so, what changes were recommended? NONE

28. Have you used natural remedies to manage your IGM? YES

29. Do you have other chronic diseases? NO

30. What is your nationality? HISPANIC

31. Is there anything else you would to share of your disease? HOPING THERE WILL BE POSITIVE CHANGES ONCE I GIVE BIRTH AND HORMONES REGULATE. THIS BEGAN SOON AFTER GETTING PREGNANT

*Somewhere on here, somebody suggested filling in a spreadsheet on google. Maybe that can offer some more information.  I've been thinking about causes as well, such as the things I used before getting GM. For example, I was taking casein powder for after workouts, amino acid pills, Lexapro (anti-depressant), I think about the deodorant I used (clinical strength), and maybe something I started eating. Also, I was wondering if maybe we could start a facebook group where we could live message eachother so feedback would be quicker. Also perhaps where we could post pics (personal, I know), but it has been difficult finding photos online of this and the various stages. I'm not sure how we could make the settings super private. Facebook would probably ban our pics :) Just a thought.
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1. Which symptoms you experienced? ALL
Red streaks
Swelling
Inflammation
Pain
Redness
Lumps
Ruptured skin
Drainage
Other:

2. When did IGM start for you? 2008 or 2009 (I have a previous thread telling my story)

3. How old were you when IGM began? 22/23

4. Did you have children? None

5. Did you breastfeed? Nope.

6. How long did you breastfeed? (total months)

7. Did use a breast pump? No.

8. How many months/years after stopping breastfeeding did you experience your first symptoms of IGM? Never breast fed prior to being diagnosed.

9. Select the doctors/services involved with your care.
Family Practice Doctor
Breast Specialist
Wound Care
Pathologist
Rheumatologist
Infectious Disease
Oncologist
Nutritionist
Other: Pain Management

10. Did your doctor have experience with IGM? Initial doctors, no.

11. Were you misdiagnosed? Initially yes.

12. Were you diagnosed with abscess? No

13. Were you treated for abscess? Were you lanced/packed? Initially, no.

14. Were you diagnosed with cysts? No.

15. Did your labs return with “sterile” or “negative for bacteria” results? Yes.

16. Was the fluid draining diagnosed as serous fluid (healing protein fluid)? No.

17. Did your doctor test prolactin levels? Currently, after a doctor switch, yes

18. Was your prolactin level…low, normal, high Normal.

19. What medication have you taken? Doxycycline, Amox, Prednisone, Methatrexate, Colchicine, Numerous other antibiotics, in addition stomach medications (reactions from medications, high-dosages, long amount of time)

20. Did a medication cure your disease? Not entirely.

21. Did you have surgery? Yes

22. What was the name of the surgery/procedure the doctor preformed? Ultimately to keep my GM away in the one breast (it has sense appeared in the other) I ended up having a partial mastectomy (this is after several other surgeries)

23. Did you have a reoccurrence any time post-surgery? None. I should note, I had VERY OCD post-surgical wound care. I was in my surgeons office at least 2X weekly to get it drained, and then packed etc to promote healing without ANY pockets from the inside out.

24. Did you have imaging done? Loads.

25. Did you use a wound care vac? (?)

26. Did a member of your medical care team make recommendations to change your diet? No.

27. If so, what changes were recommended?

28. Have you used natural remedies to manage your IGM? No.

29. Do you have other chronic diseases? No.

30. What is your nationality? Asian/caucasion

31. Is there anything else you would to share of your disease?
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1. Which symptoms you experienced?
Swelling
Inflammation
Pain
Redness
Lumps
Ruptured skin (not at first but now)
Drainage
Other: Just want to mention that my lump started out feeling like two long plugged ducts from my inner breast to the nipple; over time this converged into one giant hard mass but it's still rectangular.

2. When did IGM start for you?  August 2013

3. How old were you when IGM began?   46

4. Did you have children?  yes, two, ages 8 and 3

5. Did you breastfeed?   yes, both

6. How long did you breastfeed? (total months)   3 years 4 months for #1, 2 years for #2, total of 5 years 4 months :)

7. Did use a breast pump?   Not regularly but once in a while

8. How many months/years after stopping breastfeeding did you experience your first symptoms of IGM?   One year and two months

9. Select the doctors/services involved with your care.
Breast Specialist (surgeon)

10. Did your doctor have experience with IGM?
Yes

11. Were you misdiagnosed?
No, I was worked up for inflammatory breast cancer and this is the dx of exclusion after 4 negative biopsies

12. Were you diagnosed with abscess?
Yes

13. Were you treated for abscess? Were you lanced/packed?
No, the surgeon says it's better to leave it alone

14. Were you diagnosed with cysts?
No, the imaging just showed massive inflammation, no distinct masses or cysts

15. Did your labs return with “sterile” or “negative for bacteria” results?
Yes, I had a negative culture by FNA

16. Was the fluid draining diagnosed as serous fluid (healing protein fluid)?
No dx on the fluid

17. Did your doctor test prolactin levels?
No

18. Was your prolactin level…low, normal, high
N/A

19. What medication have you taken?
Just ibuprofen to keep the inflammation down sometimes.  I have elected to wait and see rather than starting medication right away.

20. Did a medication cure your disease?
N/A

21. Did you have surgery?
No

22. What was the name of the surgery/procedure the doctor preformed?
N/A

23. Did you have a reoccurrence any time post-surgery?
N/A

24. Did you have imaging done?
Yes, three ultrasounds and two digital mammograms so far

25. Did you use a wound care vac?
No

26. Did a member of your medical care team make recommendations to change your diet?
No

27. If so, what changes were recommended?
N/A

28. Have you used natural remedies to manage your IGM?
No

29. Do you have other chronic diseases?
Yes--asthma, hypothyroidism, history of sarcoidosis--all autoimmune conditions.  Also lupus anticoagulant antibody.

30. What is your nationality?
USA

31. Is there anything else you would to share of your disease?
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1. Which symptoms you experienced?
Red streaks-yes
Swelling--yes
Inflammation--yes
Pain--yes
Redness--yes
Lumps--yes
Ruptured skin--yes
Drainage--yes
Other: Itching, swollen lymph nodes

2. When did IGM start for you? August 2009

3. How old were you when IGM began? 40

4. Did you have children? 3, ages 26, 24, 22

5. Did you breastfeed? no

6. How long did you breastfeed? (total months)

7. Did use a breast pump? no

8. How many months/years after stopping breastfeeding did you experience your first symptoms of IGM? never breast fed, but my "baby" was 18 when symptoms first started

9. Select the doctors/services involved with your care.
Family Practice Doctor--yes
Breast Specialist--yes
Wound Care
Pathologist--yes
Rheumatologist--yes
Infectious Disease--yes
Oncologist--yes
Nutritionist
Other: _Dermatologist, OB/GYN, Hemotologist, Immunologist----have seen over 50 doctors in 4 yrs

10. Did your doctor have experience with IGM? no

11. Were you misdiagnosed? many, many, many times---was told I was "well endowed" and to eat red meat--was told it was "asthma induced impetago" because I use an inhaler once every 2-3 years--was told it was IBC....was tested for MRSA 22 times, but mostly was told they had no clue

12. Were you diagnosed with abscess? yes

13. Were you treated for abscess? Were you lanced/packed? treated yes, lanced yes, no packing

14. Were you diagnosed with cysts? yes

15. Did your labs return with “sterile” or “negative for bacteria” results? yes

16. Was the fluid draining diagnosed as serous fluid (healing protein fluid)? yes

17. Did your doctor test prolactin levels? yes

18. Was your prolactin level…low, normal, high? normal

19. What medication have you taken? bactrium, keflex, augmentin, clarithromycin, doxycycline, tetracycline, and predisone

20. Did a medication cure your disease? by the end of the cycle of each medicine, it was clearing up....after a week or so off the meds, flare ups came back

21. Did you have surgery? one surgery, multiple procedures

22. What was the name of the surgery/procedure the doctor preformed? multiple fna's, multiple punch biopsies, multiple "scrapings" for cultures, lymph node core biopsy, lymph node removal

23. Did you have a reoccurrence any time post-surgery?

24. Did you have imaging done? multiple mammograms, ultrasounds, and MRI's

25. Did you use a wound care vac?

26. Did a member of your medical care team make recommendations to change your diet?

27. If so, what changes were recommended? only to quit smoking (which I have been doing for 20 years--16 years before first flare)

28. Have you used natural remedies to manage your IGM? no

29. Do you have other chronic diseases? childhood asthma--outgrown

30. What is your nationality? USA

31. Is there anything else you would to share of your disease?  It started with the right breast and that is still the worst, however, I have had a few flares on my left within the last 3 months....I will get a flare for no reason...some last 24 hours, some last weeks...some rupture and some just disappear, as if my body is absorbing it...I can go 24 hours with no flare or months with no sign....at one point, I kept a journal of my day--I did this for 6 months--there was nothing I ate, drank, environment, feelings that set off a flare.  I have been to over 50 doctors, in 4 states, and DC...I have seen doctors who have been labled "the best of the best" on the east coast.  The only thing every single one of the doctors could agree on was that there was a physical problem....they could see and feel the issues.  I haven't been able to work, I'm tired all the time...even going shopping or cleaning the house wears me out to the point that I end up in bed for days afterwards.  The most frustrating part for me has been that I never had an answer.  After all these years and all these doctors, I had just about given up hope of ever getting an answer.  Thankfully, my persistance paid off and I was diagnosed on September 4, 2013.  I have an appointment with my main breast doctor October 18, 2013 to discuss treatment options.  I have made calls to the NIH, NHIC, and the CDC, only to be told there is very little information on IGM.  I am just so ready to get this taken care of and under control....Even with little to no information on this disease, I feel 100% better (mentally) just knowing what it is and what I need to fight.
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1. Which symptoms you experienced?
Red streaks Yes
Swelling  Yes
Inflammation Yes
Pain Yes
Redness Yes
Lumps Yes
Ruptured skin Yes
Drainage Yes
Other: Infection

2. When did IGM start for you? March 2013

3. How old were you when IGM began? 45

4. Did you have children? Yes

5. Did you breastfeed? Yes

6. How long did you breastfeed? (total months) 3 months

7. Did use a breast pump? Yes

8. How many months/years after stopping breastfeeding did you experience your first symptoms of IGM? 5 years

9. Select the doctors/services involved with your care.
Family Practice Doctor
Breast Specialist
Infectious Disease
Allergist
Rheumatologist
Infectious Disease
Oncologist


Other: ________________________

10. Did your doctor have experience with IGM? Breast Surgeon is treating one other case

11. Were you misdiagnosed?
First two Surgeons said I had fatty tumors that needed removed, had 2 surgerys to remove them, after second surgery is when my symptoms started
12. Were you diagnosed with abscess? Yes

13. Were you treated for abscess? Were you lanced/packed? Yes

14. Were you diagnosed with cysts? NO

15. Did your labs return with “sterile” or “negative for bacteria” results? No

16. Was the fluid draining diagnosed as serous fluid (healing protein fluid)?
No
17. Did your doctor test prolactin levels? Not sure

18. Was your prolactin level…low, normal, high

19. What medication have you taken? Way too many!  Bactrim, Doxycyclone, Zithromax, Prednisone up to 70 mg per day still on 40 mg, Percoset, Vicodine, telflaro, and probably a few I have missed

20. Did a medication cure your disease? no

21. Did you have surgery? yes

22. What was the name of the surgery/procedure the doctor preformed? removal of 2 masses one the size of a grapefruit other size of a lime

23. Did you have a reoccurrence any time post-surgery? yes

24. Did you have imaging done? yes

25. Did you use a wound care vac? no

26. Did a member of your medical care team make recommendations to change your diet? no

27. If so, what changes were recommended?

28. Have you used natural remedies to manage your IGM? no

29. Do you have other chronic diseases? asthma

30. What is your nationality? US

31. Is there anything else you would to share of your disease?
. Myself I am searching for help for a doctor who actually has treated cases I keep getting infection after infection, hospitalized now on iv antibiotic for 4 weeks and I now have two spots in my elbow area which was drained and tested positive for MRSA.  Not one of my doctors can explain this or know why


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Is there a place on facebook for this group? I was diagnosed couple years back.. I don't have the abcess (abscess) any longer.. again?yet? I have a flat hard mass left in my breast, sometimes itchy and lately dull aches in that breast and in my armpit.
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Is there a place on facebook for this group? I was diagnosed couple years back.. I don't have the abcess (abscess) any longer.. again?yet? I have a flat hard mass left in my breast, sometimes itchy and lately dull aches in that breast and in my armpit.
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