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marta
11-08-2010, 11:40 AM
Hey gang,

While lying in bed after my last little hospital stint, I'm trying to reconnect my three brain cells together and had these crazy patterns swirling in my head from reading a bunch of posts on here. I am no scientist by any stretch of the imagination and the questions I've put in here are more for curiosity than anything else, but what the hey?

I'm always curious, and I apparently can't just lye in bed and do nothing, so here's the latest little hatchling. Completely annonymous. Super short (I used the free version so only 10 questions.) I'll post the results and maybe some of you guys who are actually trained in analytical thinking can see something. I have more questions, but as with Wegs... baby steps.

Here's the link to the survey if you want to blow five minutes reminiscing of the good old days.:wink1:

Inquiring Weggies Want to Know Survey (http://www.surveymonkey.com/s/LGMC9Y8)

JanW
11-08-2010, 11:53 AM
I just did it, Marta.

elephant
11-08-2010, 11:58 AM
Marta, I will have to do it tomorrow. Mine is long and complicated!

marta
11-08-2010, 12:26 PM
Gracias Amigas,

No rush, just when you wanna blow some time and see what comes out of it.

You rock.

Sangye
11-08-2010, 12:39 PM
I took it-- very fast. I was a bit confused by the wording in the question about initial symptoms that "got the ball rolling." Wasn't sure if you meant the very first symptoms, or those at dx.

marta
11-08-2010, 12:49 PM
What I meant was what were the symptoms that got you searching for answers - so in my mind I think that would both the first symptoms and those at dx, although they might be different, but I think that everything before diganosis is what I'm curoius about. I'll reword the question.

See, told you, not a scientist, just a curious Weggie.

Thanks so much, I've got a few respondants already, and it's cool to see things emerge.

dunkie2202
11-08-2010, 02:55 PM
Hey Marta, I completed your survey... Will you let us know what the results are???

marta
11-08-2010, 03:04 PM
Absolutely!!!!

DEE
11-08-2010, 04:54 PM
Ok Marta
its 5am here hubby just gone off to work and ive just finished your survey
true weggie style or what :flapper:
you sound as though things are getting better good news :thumbsup:
take care of you
ps hoodie going for another outing today :thumbsup: :thumbsup:

pwc51
11-08-2010, 06:03 PM
Anonimity rules OK - I have completed it too! I hope you can make sense of the anwers! I look forward to seeing what results you get.

Sangye
11-09-2010, 12:13 AM
Even professional pollsters can't anticipate how different people might struggle with the wording of a question. You did a great job, Marta.

gmyi
11-09-2010, 01:00 AM
helo marta
good idea i just complete the survey

chrisTIn@
11-09-2010, 01:40 AM
I completed it too, Marta.
Do you already have an idea what you are going to do with the results?

Are you still in the hospital?
Hope you feel better soon! :smile1:

Psyborg
11-09-2010, 02:05 AM
I completed this, pretty straight forward :)

One question I have...which you'll need time to compile no doubt, but is it me or do there seem to be clusters of us? It just seems like we get a lot of people from some areas (comparatively) versus others.

freakyschizogirl
11-09-2010, 05:21 AM
I've done it too Marta.
Great idea and wonderful thing to do.

marta
11-09-2010, 05:23 AM
This is quite cool. Like I said at the start, the reason I did this is because I was lying in bed and patterns were swirling in my head. Psyborg, clusters was one of them, not sure if it is just because we're all Anglophones on this site, but seems to be a lot from the UK (althought that might be becuase of a dense population base compared to the New World) and quite a bit from the Eastern US (also more densely populated, I think.) Another thing was the physical fitness thing. Jack mentioned in Malalolana's thread about many of us being in fairly good physical shape before getting sick. Then I was watching this thing on TV that was talking about what we all know, that being in good shape helps boost your immune system, and in our case that's not really a good thing. I was in rockin' shape just before I got sick. Probably the best physical shape in my life. I think it saved my butt when I went down hard, but the commonality between us is what is curious.

After I posted the survey yesterday, I had a few ideas of a couple of questions that I would have omitted and substituded with different ones, but alas, it was a whim. And you guys are so awesome to go with my crazy little whims.

ChrisTIn, I think that to make any survey a viable one, you need 33 respondents. If and when I get that, I can send it off to the Vasculitis guys, I'll post it on here, I'll post it on my blog, we can use it in our book. The questions are definitely not scientific, so don't know if anyone with any research background can use it but it'll be there, in the anals of the written world.

That's something else that has been kinda on my mind. Wouldn't it be cool to have one main Wegener's Databank for the whole planet. If anyone gets diagnosed, they fill in a bunch of info, and there's stats on everything, including demographic, sociographic, physiological, DNA, we can see if the disease is on a rise or a decrease. I keep hearing that it's at epidemic proportions in Europe compared to the numbers of just a few years back. Would that be because more people are actually getting a true diagnosis, or is it really on the rise. I think that would be an interesting reasearch proposal. Maybe time to go back to Uni. ha ha.

By the way, I'm out of the hospital, but still feeling pretty gross (it's all relative though, because I know that compared to some of the struggles that others on this site experience daily, mine is nothing) I just about passed out today just scraping the frost off my car windows. That kinda blew me away. I had no idea that I am that weak right now. I mean I know, but you always think you're being a little whimpy and when I started to black out and loose my footing I was absolutely shocked. Bay baby steps. Gonna go and chill out with a cup of tea in my sequestered basement suite. Thanks for asking and for being such a great group. I don't know if it's because I've had such a pred crash or because you all have gotten so close to my heart (I am one of those people) but I find myself tearing up often when I read this forum. I really think this is one of the BIG blessings that has come out of this cooked out ride, getting to know a number of amazing people sparingly interspersed throughout our little planet.

hilhoff
11-09-2010, 05:44 AM
Just took it, excited to see the results!!:thumbsup:

Geoff
11-09-2010, 07:39 AM
Wouldn't it be cool to have one main Wegener's Databank for the whole planet. If anyone gets diagnosed, they fill in a bunch of info, and there's stats on everything, including demographic, sociographic, physiological, DNA, we can see if the disease is on a rise or a decrease.
Amazing Marta, when you see that this forum has nearly 800 members, just consider all the possible data that could be collected. Interesting about the DNA connection when you see what Addenbrookes are currently doing on this front (see my posting). Surely it not too much to hope for that with more and more data being accrued then a possible cure could be found?
Congratulations on another 'small baby step' but as Mr Armstrong was heard to say..........One Giant Leap for Mankind!

Psyborg
11-09-2010, 07:57 AM
That's something else that has been kinda on my mind. Wouldn't it be cool to have one main Wegener's Databank for the whole planet. If anyone gets diagnosed, they fill in a bunch of info, and there's stats on everything, including demographic, sociographic, physiological, DNA, we can see if the disease is on a rise or a decrease. I keep hearing that it's at epidemic proportions in Europe compared to the numbers of just a few years back. Would that be because more people are actually getting a true diagnosis, or is it really on the rise. I think that would be an interesting reasearch proposal. Maybe time to go back to Uni. ha ha.


Is this not something they already do in some fashion? If not it would be pretty easy to set up a database, the harder part would be collecting all the correct kinds of data to collect.

elephant
11-09-2010, 08:07 AM
Just did the survey. Thanks again and looking forward to the results.

freakyschizogirl
11-09-2010, 08:09 AM
That's something else that has been kinda on my mind. Wouldn't it be cool to have one main Wegener's Databank for the whole planet. If anyone gets diagnosed, they fill in a bunch of info, and there's stats on everything, including demographic, sociographic, physiological, DNA, we can see if the disease is on a rise or a decrease. I keep hearing that it's at epidemic proportions in Europe compared to the numbers of just a few years back. Would that be because more people are actually getting a true diagnosis, or is it really on the rise. I think that would be an interesting reasearch proposal. Maybe time to go back to Uni. ha ha.

Thats something that would interest me.

Especially as you say its up to epidemic proportions...how many people counts as a epidemic??
And is that just better diagnostic tools and tests these days and savvy doctors. Who knows??

My mind is buzzing now. I think we all have a lot of questions. We needs to kidnap us a doctor and subject him to our queries!

elephant
11-09-2010, 08:12 AM
Wonder if there are any Wegeners specialist lurking on this forum....Hello.....come on in ...we don't bite!

freakyschizogirl
11-09-2010, 08:21 AM
lol yeah...show yourselves!!

I'm convinced Sangye is...With all that knowledge.

pberggren1
11-09-2010, 09:03 AM
I am getting quite hyped and excited to meet you tomorrow Marta.:w00t::w00t::w00t:

elephant
11-09-2010, 09:15 AM
That is great Phil and Marta! Two fabulous people!

pberggren1
11-09-2010, 10:17 AM
That is great Phil and Marta! Two fabulous people!

How do you know I am fabulous elephant?:wink1:

marta
11-09-2010, 10:23 AM
"Close Encouters of the Weggie Kind' - too too too too too (remember the tune?)
I can just see the movie now... us hobbling towards each other, skinny little Weggie fingers stretched out. Talk about a rare sighting.:w00t:

I too am super stoked Phil. Can't wait. Dinner with pred heads - put your babies away evryone.

Sangye
11-09-2010, 02:47 PM
lol yeah...show yourselves!!

I'm convinced Sangye is...With all that knowledge.
ROTFL I can assure you I'm not. I think my chiropractor peers would drum me out of the profession.

But I do wonder if those docs sneak a peek now and then. Dr Seo said something to me last time that made me think he'd read some of my posts. (That's right, Dr Seo. If you're reading this, I'm on to you!) LOL Boy, we're sounding really paranoid. :laugh:

me2
11-09-2010, 03:04 PM
I took the survey. I kinda noticed too that it seems like a lot of weggies, at least on this site, seemed to be above average active , health conscious and just plain healthy. It makes sense that a powerful immune system turned against itself could make one very sick. Marta, the movies never tell us , so maybe you can let us know , what make and model is the Batmobile? I wish I could come over. I haven't got to talk with a fellow weggie in a very long time. Everybody here sounds interesting and kind. Maybe at the next convention I get to meet one of you. Or maybe I should get one of those spotlights to shine the bat symbol up on the clouds. nah, nah, nah, nah, nah ,nah, nah, nah Baaatmaaan.

me2
11-09-2010, 03:07 PM
Sangye,
I know my chiropractor would not do any drumming against you. He is as cool as you are , although he doesn't know much about wg. Of course neither would we probably if we didn't have to.

andrew
11-09-2010, 10:40 PM
Nice one Marta! Just took the survey and am very keen to see the results! Hopefully some of those that just visit will answer it too....hmmm....that gives me an idea....

Sangye
11-10-2010, 12:12 AM
I love how you put it on the welcome page in yellow, Andrew. Way cool! :thumbsup:

andrew
11-10-2010, 12:14 AM
I can't take credit for that, it was the default :)

Sangye
11-10-2010, 12:16 AM
Better default than your fault. :wink1:

marta
11-10-2010, 04:05 AM
Nice one Marta! Just took the survey and am very keen to see the results! Hopefully some of those that just visit will answer it too....hmmm....that gives me an idea....

I know what you're thinking my awesome administrator friend. I was thinking the same thing, but I've worked with Surveymonkey before and knew I can manipulate it without too much discovery required, so I went that route. I didn't want to bug you cuz you've got your hands full with all of us - ha ha. Speaking of which, THANKS for helping out with my mom's stuff.

I was just about to post the results so far last night and then I got a bit sick, so I had to go horizontal. I've got some stuff today, but as soon as I get a moment I'll post the easy answers to post. There are some that I'll have to sort out and re-write, but I'll definitely post the easy ones when I have a sec.

Thanks to you all for being such awesome Weggie Sports.

On a completely different note, I just had another idea while lying in bed last night (it seems like they come to me when I'm horizontal and in distress) about a very interesting sponsorship/awareness opportunity. I have to run it by some key people and it would take some time (real time, not like the usual Marta timelines) to materialize but if it did happen, it would be HUGE - GLOBAL - G-L-O-B-A-L !!!! Which is why I think I would have to pitch it under the Vasculitis umbrella, but hey, we're part of one big preddy family.

Brooke
11-10-2010, 05:38 AM
I just took the survey too :)

Hal
11-10-2010, 07:12 AM
I just replied as well. Really looking forward to viewing the results!

Cindy R
11-10-2010, 09:49 AM
Marta, I filled out the survey with mom's info. I only listed a few of the medications, because I don't remember what all they were! You are doing great things....!
Cindy R

elephant
11-10-2010, 10:42 AM
Hope you start to feel better Marta.

Fran
11-10-2010, 09:07 PM
Marta - I think you are amazing (even when you are ill ) - I hope you get well very soon - don't overdo things.

chrisTIn@
11-10-2010, 10:52 PM
"Close Encouters of the Weggie Kind' - too too too too too.

You sure know how to write a Hollywood scenario. LOL! :biggrin1:
I hope your encounter with 'Batman' will be great for the two of you!

marta
11-12-2010, 01:27 PM
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
11-12-2010, 08:22 PM
That's awesome Marta, well done! Thanks for taking the time and energy to do it!

elephant
11-12-2010, 11:35 PM
Thanks Marta!

Sangye
11-13-2010, 12:38 AM
Pretty cool-- thanks Marta. :thumbsup:

Geoff
11-13-2010, 12:45 AM
Congratulations Marta, Where do you get the energy?

dunkie2202
11-13-2010, 07:42 PM
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
11-19-2010, 02:11 PM
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.