Survey - Inquiring Weggies Want to Know

[chrisTIn@]

"Close Encouters of the Weggie Kind' - too too too too too.

You sure know how to write a Hollywood scenario. LOL!
I hope your encounter with 'Batman' will be great for the two of you!

[marta]

Hey gang. You're all unreal. As I post this we have 60 replies to the survey. UNREAL!!!!

I was about to post some results the other day and got sick quite suddenly and had to abort. I'll post just some highlights as I have to compile the stuff (I'm a cheepo, and only using the free version, so it takes a little longer to tabulate and post)

So here are some highlights:

Questions 1. Where were you living at diagnosis?
1. Sweden, Europe
2. Manchester England
3. Chicago
4. UK Thu,
5. Brisbane, Australia
6. in Rhode Island
7. Middlesbrough, United Kingdom
8. Lynn, Massachusetts
9. 5 minutes from the sea in eastern England
10. Pennsylvania
11. Edmonton
12. Missouri, USA
13. Parma, Ohio
14. charlotte, n.c.
15. Charlotte, NC
16. Derby, England
17. Newfoundland
18. Sweden
19. Australia
20. On the South oast of Englandm in a slighty damp flat
21. Darwin, Australia
22. Kent, Washington
23. canada
24. Austin, TX
25. California
26. Gold Coast Australia
27. South Carolina
28. Essex, United Kingdom
29. Dublin, Ireland
30. Streator IL
31. Jasper, Canada
32. UK
33. Arizona
34. Bangalore in India
35. Alliance, Nebraska, USA
36. Arkansas, USA
37. Delaware, Oh
38. Swift Current, SK, Canada
39. Norway
40. Israel
41. east tennessee
42. Southern Ohio
43. Scotland
44. Birmingham, England.
45. UK
46. Victoria, BC Canada
47. UK
48. new zeland
49. hull uk
50. Australia
51. Spokane, WA
52. illinois
53. Flagstaff, Arizona Sun,
54. Minnesota
55. Hoboken, NJ

Question 2.
66.7% female (40 people)
33.3% male (20 people)

Question 3. How old were you at diagnosis?
Under 12 0.0% 0
13 - 20 15.0% 9
21 - 30 11.7% 7
31 - 40 13.3% 8
41 - 50 26.7% 16
51 - 60 26.7% 16
61 - 70 5.0% 3
70+ 1.7% 1

Question 4. How would you rate your overall physical fitness before diagnosis?
Pro Athlete 1.7% (1)
Very Very Active 16.7% (10)
Above Average activity level 33.3% (20)
Average 45.0% (27)
Too busy to exercise 0.0% (0)
More down than up time Rating 3.3% (2)

Comments:
1. I didnt do much exrcise but was never still with working full time and running a pub and 2 kids and 2 dogs to run around after.
2. For the two years preceeding diagnosis - very poor !Up until then good.
3. Hiker
4. I wasn't super fit but around average I suppose
5. Overweight but active
6. Rode my bike 10-20k every morning. Could actually run too.
7. Excellent shape.
8. cycling 20+ miles per day
9. walked every where
10. About 1 1/2 hours gym work 4 nights a week.
11. Physically fit for my age with no past history of any illnesses
12. I used to be a softball player before the diagnosis.
13. want to play lot basket ball,cricket
14. Above average immediately before. In years prior I had been very sedentary, but had made changes to that lifestyle...needless to say the Wegs was a blow.
15. I walked alot and rode my bike.
16. Used to be very very active, but the last two years before diagnosis not so much.
17. worked 12 hour shifts in law enforcement, and fought fires in my 'spare time'... plus remodeled houses...
18. Had diabetes and was on insulin pump.

Question 5. How long between symptoms and diagnosis.
1. four years
2. 2-3 months
3. Initial symptoms (foot pain) May 2008 diagnosis October 2008 - 5 months
4. 2 months
5. 6 months
6. 6 months
7. six moths
8. 5 months but this was mainly due to being messed about by my GP - once I was in hospital, diagnosis followed in a matter of days.
9. My systoms appeared around the Forth of July. After numerous visits to various medical professionals, I was diagnosed September 23, 2008.
10. Approximately two years
11. 3 months
12. It wasn't very long. A few months I would say, from when I was experiencing chest pain to when I went in and was diagnosed.
13. 23 days
14. 2 years
15. 18 months
16. 2 months
17. four months
18. at least 10 years
19. two weeks, after I got admitted to the Emergency room.
20. 7 years
21. From initial symptoms to diagnosis, just a few months. Symptoms started in early July and was diagnosed mid/late September.
22. 3 weeks with severe symptons but may have had it 3/4 months before
23. 6 weeks approx
24. about three to four months
25. 6 months?
26. approx 5 yrs
27. 10 years
28. Very quick actually....got hit by a car while cycling, and CT head/chest showed lung infiltrates
29. 2yrs or so possibly 3
30. A couple years starting at age 12.
31. 4 Months
32. 4 weeks however I believe that WG started 6 years prior to diagnosis when I started to experience symtoms of fatigue and joint pain. This disappeared after a year and I thought no more about it until I was diagnosed in 2010 after deteriorating very fast.
33. 7-8 months of symptons, and then 2 months from the first hospital visit.
34. 3.5 months
35. 3 long years
36. 3 months
37. 2 years
38. nine months
39. 3 weeks
40. 4 months
41. It was about 2 months.
42. hard to say, but at least 9 months
43. 4 months. Though probably 16 months when thinking about it later.
44. 4 month
45. was ill for several years with no concrete answers. thought i was a hypocondriac lol... got bad in April 2010, dx july 2010
46. 2-3 years
47. 2 months
48. 18 months
49. 4 months
50. Probably about 6 weeks from first visit to doctor - all a little hazy now. In reality I now see there were other symptoms for a few months ahead of that that I was ignoring!
51. 12 months
52. eighteen months
53. 4 months
54. 17 years
55. 4-6 weeks
56. 1 year (because I didn't go to an MD)
57. 2-3 years
58. five years

Question 6. Symptoms
Joint pain 75.4% 43
Fatigue 68.4% 39
Sinus problems (scaling, bleeding, pain) 57.9% 33
Headaches 28.1% 16
Ear aches 31.6% 18
Eye problems 21.1% 12
Tooth pain 12.3% 7
Skin lesions / problems 42.1% 24
Gastro Intestinal problems 10.5% 6
Loss of apetite 35.1% 20
Weight loss 29.8% 17
Saddle Nose 7.0% 4
Persistent cough without blood 33.3% 19
Cough with blood 19.3% 11
Night Sweats 43.9% 25
Blood in urine 24.6% 14

Other symptoms (I can't believe that I forgot hearing loss, since it was my first symptom)
1. nerve damage
2. problems with balance organ, vertigo
3. Flu like symptoms put myself to bed for a fortnight until the pain took over and i had to go to hospital
4. Rash, swollen feet and ankles, the bottom of my feet hurt so much it was like I was walking on egg shells - I could barely walk on them
5. sore throat
6. My very first symptom was bleeding gums.I also had blood under my fingernails. (splinters)
7. Problems walking - ankle joints giving way - no pain - falling over constantly.Kidney pain
8. My kids had the fifths disease and I caught but in an adult it is called the Parvo virus and it is alot tougher on adults then kids. I couldn't believe a kids disease could pummel me like it did! The doctors all thought this was very interesting that I was diagnosed with wegners 3 months later! Thought that I might mention it!
9. Chest pain, pain in my lungs, quite severe.
10. Fever, Hard to breath (lungs)
11. swollen gland near my ear
12. Difficultybreathing
13. Swelling in legs and feet due to blood clots.
14. Thought I was experiencing Menapause and then had gall bladder out 3 weeks before diagnosis
15. Shortness of breath
16. blood clot
17. shortness of breath
18. constant pain of the legs. Felt bruised to touch them and the they would swell.
19. Joint pain in every joint, moved around.
20. Tinitus
21. Drop foot
22. Hearing loss
23. That's what was going on, but I was in serious denial. It wasn't untiul I couldn't breathe after climbing steps, that I had a family member call the ambulance.
24. Pneumonia symptoms, high fever lasting for days
25. Dizziness, and way elevated sed rate as well.
26. hearing loss, no taste or smell, trouble breathing, trouble talking and swallowing, could not breathe through nose because it was totally plugged up like concrete.
27. Problems with my nervous system. Half of my left hand got numb and hurt a lot. Half my tongue swelled up.
28. sweling of the salival gland and TMJ out of place
29. persistant fever (usually 103 or better)sudden 2 day rash on torso approx 2 weeks before being hopitalized for the first time with severe cavity pneumonia
30. loss of hearing in one ear
31. saddle nose only a short while later
32. Back pain, difficulty breathing
33. Mouth sore
34. I didn't have anything other than severe joint pain for several months. Then fatigue, shortness of breath, severe anemia, skin lesions and cough.
35. breathlessness (stenosis)

Question 7. What specialists did you see before diagnosis?
GP 68.3% 41
ENT 50.0% 30
Nephrologist 16.7% 10
Rheumatologist 35.0% 21
Endocronologist 3.3% 2
Pulminologist 23.3% 14
Internist 16.7% 10
Emergency Room 41.7% 25
Other (fill in the comments for more info) 18.3% 11

Question 8. Who finally diagnosed you?
1. rheumatologist (consultant at the ENT-ward)
2. Renal
3. GP
4. General Medicine
5. ENT
6. Vasulitis/Rheumatologist
7. Consultant Nephrologist
8. Rheumatologist and Nephrologist in Boston-Brigham and Women's Hospital
9. Rheumatology - RA and vasculitis
10. Rheumatologist
They Thought at one point that I had Wegners and Good Pastures disease. They where treating me for both at one point. Till results of lung biopsy came back + for Weg
11. I'm not sure. He might have been a pulminologist. But I can't find his information.
12. Rheumatologist T
13. nephrologist
14. ENT
15. Rheumatologist
16. neurologist
17. Rheumatologist
18. Mayo Clinic Pulmonologist
19. Rheumatologist and ENT
20. kidney and nephrologist
21. Nephrology (Renal)
22. Immunologist (I think)
23. ENT
24. rheumatologist
25. thoracics
26. pulmonologist
27. Rheumatologist
28. ENT
29. Allergist diagnosed me.
30. Rheumatologist
31. Nephrologist
32. Rheumatologist/ Vascular Surgeron.
33. Internist and his team
34. ENT who did Biopsy. Then passed me on to Chest Consultant AND Rheumatologist
35. Rheumatologist
36. rheumatologist
37. pulmonologist
38. Nephrology
39. Rheumagologist (Number 3 seen), but the hematologist definitely got us on the right path (saved my life most likely).
40. I am not totally sure but I think it was Internal Medicine. Or a combination of many docs ID, Rheumy, ENT, etc.
41. internist
42. Rheumatologist
43. ruhumatologist
44. pulmonologist (love you Dr Dimeo)
45. rheumatologist
46. pheumatologist
47. ENT
48. ENT
49. Respirologist
50. as 7 - Rheumatologist
51. house surgon
52. immunoligist at first meeting
53. Nephrologist
54. Rheumatology
55. nephrologist
56. Pulmonologist
57. rheumatologist and nephrologist
58. rheumy

Question 9. Predisposition to allergies?
Yes 33.3% 20
No 66.7% 40

I'll update this later with the extra comments and the drugs. It takes some time to pull the extras out of the copy, so I will do this in baby steps. We're all familiar with baby steps in our new normal. Ha ha

Thank you guys for being such sports.

[andrew]

That's awesome Marta, well done! Thanks for taking the time and energy to do it!

[elephant]

Thanks Marta!

[Sangye]

Pretty cool-- thanks Marta.

[Geoff]

Congratulations Marta, Where do you get the energy?

[dunkie2202]

Wow Marta you have done an awesome job....Thanks for posting the responses it's interesting to read......I'll be very interested to see the medication list. Hope you are well take care

[marta]

I'll do a little more in a bit. Since I posted this there have been another 16 responses. Some of the answers have made me cry and reading them yesterday is what made me start working on the outline for each of our stories in the book. So stay tuned as I start sending them your way.