Recapitualtion

[annekat]

I dont usually ask but yesterday I realised how much I dont know or ask about. I think I am a difficult patient.

I don't think you are a difficult patient. I wonder if they think anyone who asks a lot of questions is a difficult patient.

[Lightwarrior]

I don't think you are a difficult patient. I wonder if they think anyone who asks a lot of questions is a difficult patient.

To qoute the critical care pulmonologist that I work with who cried when he found out I had Wegener's. "You will have to become the expert because unless you move to an area where there are specialists then you will have to teach the docs " So...we are not difficult patients we are merely trying to stay alive.

[delorisdoe]

I don't think you are a difficult patient. I wonder if they think anyone who asks a lot of questions is a difficult patient.

The reason I see myself as difficult was glaringly obvious yesterday. The resident that first saw me asked many questions and did a thorough enough exam. Getting my history was like pulling teeth-see above quote "oh ya and I coughed blood". When the atending came in and saw me he asked me how my joints felt and I told him they still hurt a lot daily but that the mobic did not agree with me so i was just dealing with it. The poor residents eyes popped out of his head and he said "joint pain now?" he asked about 12 years ago not now. Me, I only told him what he asked. Poor dude. In my situation the residents would really appreciate a patient who asks a lot of questions. Maybe an attending would not like it so much but too bad for them.

[annekat]

It doesn't surprise me that residents are more likely to want to ask and answer questions, where the established docs are more likely to give us the short shrift. After 12 years of WG, I can understand how filling in someone new on your case history would be quite a chore.

[Jaha]

Thanks Al for sharing your story. Your skills at writing are amazing. I find that when telling my story of Weg's I really do forget alot of the signs that I had years before getting Dx in Sept 2010. I guess for all of us who were so active and strong we probably just ignored alot of thoses signs.
Jana

[annekat]

Thanks Al for sharing your story. Your skills at writing are amazing. I find that when telling my story of Weg's I really do forget alot of the signs that I had years before getting Dx in Sept 2010. I guess for all of us who were so active and strong we probably just ignored alot of thoses signs.
Jana

I, too, keep thinking back to possible signs that happened earlier. I keep saying I think my Wegs started in 2008, but as early as 2000, I was having some very unusual tinnitus and head congestion that I never had experienced before....

[Debbie C]

I am the same way about symtems and were they signs ? When I first moved back to Ohio from Fla. I felt great then all of a sudden I was having a hard time catching my breathe..when I went to the first doc. he gave me one of those nebulizer machines and albuteral sulfate to inhale 3 times a day.My problems seem to go away so I just brushed it of a having sinus problems since now I live next to a huge rural park and surrounded by trees other than palms. Then a few years ago I got what I thought was an ear infection..I went to a different dr. ( I had to change cuz the other one kept asking me out and he was married..not cool !) So this new one said I had a middle ear infection and put me on antibiatics but it didn't help so after a couple of weeks I went back to his office and he was on vacation so I saw another dr. in his practice who told me I had a inner ear infection and different antibiatics..that didin't help either..So finally I went to a ear Dr. and he said I had an outer ear infection and again more antibiatics...well after all that I ended up with c-diff. I thought I was dying.I would have sweats and then be ice cold, I lost 15lbs, and I only weighed 102 at the time so i was about 88 ibs. I called my Dr. and told him and he said I did not have a tempiture and to go buy a thermomitor and not to call him because he had patients there were dying and I was wasting his time and thats when he started that I had all this anxiety and he just passed that on from dr. to dr. After all that I ended up in the hosp. in isolation and given a bunch more antibiatics to get rid of the c-diff. I ended up seeing a ent dr. whose said I didn't have any infection at all..it was just my ear drum was swollen. To this day I will not take another antibiatic unless my life depends on it. C-diff is horrible. And now lately I've noticed my sinus acting up but I don't know if because its spring or a wg. thing.I'm just gonna wait ahile a see. So it is really hard to tell when this all starts because the symstems are really nothing

[Al]

If I have a larger point, it would be, I think, that delayed diagnoses--whatever the reason for them--threaten major organs and, perhaps, life itself. I understand the desire to look for simple, prosaic answers first. But this is not always where the solutions lie. By the time this becomes apparent, lungs and kidneys, for instance can be in serious trouble. Yet the system is not set up for rapid diagnosis. There are many reasons for this. I hope to get a major dialog going about the what-to-do-about-that of it all. I'll start: At the end of each and every day, the doctor goes home, to his or her own family, has a drink or two, and, perhaps, falls asleep in front of the television. The next time he or she thinks about your ailment is at your next appointment. For you on the other hand, it is pretty much constantly on your mind--at least in the back of it. Therefore, it behooves you, the patient, to take the lead in de-coding the "dots". In my case, I felt strongly that I had a systemic inflammatory disease, even though I had no vocabulary for it; nor could I, then, discuss a hypothetical etiology and pathogenesis for it. I had to keep blasting through the tendency for the medicos to ignore the history.

I think there is more to this story; your turn!

Al

Al

[mishb]

To be a little bit fair to the doctor, in an 8 hour clinic day, he/she could see approx 30 patients or more with various degrees of illnesses.
My guess is that their mind, by the end of the day, would be on many many different people at any one given time and could also be thinking of your problems too.
If it was me as the doctor, by the time I went home after an 8 hr day in the clinic and possibily another 3 or 4 at the hospital - my mind would just be mush.

We really don't know what type of patients he has seen that day. He may have diagnosed a cancer, (my friends 2 year old daughter just had a kidney removed due to cancer, which was diagnosed by her local doctor), he may have lost a patient that day at the hospital, or he may be tryng to put all of your symptoms together and then getting them a bit confused with someone else's at the same time because he is not allowed to remove your file from the clinic to refresh his memory.

Even though I saw my doctor approx every 10 days trying to get an answer from her and knowing that there was no way she could forget my symptoms, and knowing how annoyed I was with her, I guess we are all human and we all need to remove ourselves from our work by going home and refreshing our mind for the next day ahead.

........we need to just keep on pushing to get the answers fitting the symptoms

[Palmyra]

Dear Al and all my other friends on this site,

I appreciate your story Al. Thank you for sharing and I will compliment you on your wonderful turn of phrase and ability to express complex thoughts. As the parent of a dear daughter that suffers from this ever mysterious pathology, I too struggle to comprehend the complexities of this disease. I hope for an actual cure and have hopes that it will occur at a molecular level in the not too distant future. As the greater expanse of autoimmune diseases in general continue to challenge a large portion of the population, science and medicine will continue to look for what I hope will be a greater understanding of the causes of these conditions and hopefully a resultant cure.

As an aside, I was first happily introduced to the San Juan's when my brother was doing research for UW at Friday Harbor in the 70's. I have since had the pleasure of touring Orcus and beyond, and envy your proximity to such a beautiful place.

And, as a 'tooth fairy' I will also contribute a small bit of information regarding a side effect of a drug classification that you mentioned. Blood pressure/control is affected by kidney function. When kidney function is stressed and more typical BP drugs do not easily control pressures, calcium channel blockers are frequently utilized. They have the occasional side effect of causing gum tissue to enlarge and grow (a condition called gingival hyperplasia). Even many dental professionals are not aware of that potential side effect, so be sure to inform your DDS/hygienist. Good oral hygiene and frequent cleanings are important. The mouth is a virtual waste bin and den for all kinds of microrganisms that can imperil those with deficient immune systems. Floss regularly

And, regarding the condition of our (USA) current medical system at large, I can't say enough positive words about what I have witnessed at the Mayo Clinic and its philosophy of collaborative medicine. It is the best I have ever seen.

Hugs and best wishes to all!
Mom Jane, BS, RDH