onatreetop5 update

[Psyborg]

Sorry to hear that you are struggling. I hope things turn around for you soon

[pberggren1]

What is rdw?

[elephant]

Onatreetop, sounds like your still fighting Wegeners and it is really beating you up! IS your Rheumy contacting a Wegeners specialist? You don't sound good, it is concerning.

[Psyborg]

What is rdw?

I believe this is a measurement of the red bloodcell width. Hopefully someone more knowledgable will correct me if I'm wrong

[coffeelover]

Onatreetop,

It sounds like you may have more than one thing going...but it definately sounds WEGS related. Please go see a specialist soon. That breathing difficulty has me a bit scared for you. I did the humidifier and the inhalers for a while thinking that could cure me and ended up breathing through a very small straw (diagnosed with stenosis). Please check it out. Yours seems to be progressing rapidly.
coffeelover

[onatreetop]

Saw the man today. After my remicade infusion. He said the labs are different numbers that are not very alarming. We will see you in three monthes . but next remicade infusion is 4weeks. he changed everything he had said to me for over a year and a half. I left really confused and upsaet. It was almost like he was giving up on me. I couldnt even try to talk to him or look him in the eye. I knew id lose it. soi took my paper and went up front to schedule next appt. and decided to write him a breif list of my adventures in the ER and lightheadedness etc . one of the girls took it back to him. he made notes next to each questions. 3 said already on meds for this the other 2 said pulm doc s area. then I walked out of the office forgetting the lab slip. went back in to get it and went to the lab to give more blood. then finally got out of there, got there at 915am left at445pm. really long day.

[Sangye]

Why are you still seeing a doctor who treats you like that?

[elephant]

Onatreetop, please see a Weg specialist and forget about him. Do you have a friend or family member that can drive to to JHU and see someone who is going to take this disease seriously!! You have been fighting this disease long enough, and this doc is not doing you any favors. I say all this because I care about you!

[onatreetop]

I appreciate all the concern and thoughtfulness.I am caught in between a rock and a hard place. No docs close for regular visits. JHU wanted me to stop taking everything and see what developes because there was no postive biopsy collected. Honestly I am scaierd to stop taking the meds for fear of massive relapse. All my docs (14) now agree it is wg but........ the biopsy is the missing puzzle piece for JHU. The arthritis is getting worse thats why I am trying the remicade. Only my 2nd dose. three monthes to findout if there is relief or not.
I am thinking about heading north instead of west this time. But from what you have said JHU is the place to be? It has been a year I think? So..............i havebeen entertaining the idea of cutting back on my own...I know.....not a good idea....but that way by the time I get the appt for JHU whatever is going to show it will be by then. I am going to try and get rid of the cymbalta slowly. I split the dose to pm and am first. Try that for a week then next drop 30mgs and stay 60mgs for a while then drop to 30mgs and see if I can get off that in a month or two.I believe it is messing me up more with the steriods and elavil and all the other meds. I am way more emotional and it is getting harder to control. stopped the percocet weeks ago and am taking the ultram now. Now I am not so stupid. Some of the sweating went away with the perc. too. I have alot to think about and do. I need a good RA that has time for me and isnt afraid of the wg the way everyone seems to be. Every specailist ends up talking to the RA everytime before making a move. I understand that they arent comfortable with my wg but good god! Just frustrated right now. There are a lot of changes in the mist right now between family and work. The medical crap is becoming overwelming on top of everything. I fininshed our taxes and kept my reciepts for most of the year. Just my copays and meds copays added up to 15000.00. And i didnt find all of them. Missed a few monthes and didnt include any of the kids doc appts or meds. just me. So...........I am working my tail off to be able to go to all these docs and pay for all the meds basically. I am greatful to have work beleive me.But poop it is a neverending circle.
The left hand is in constant pain now. Swollen and hurts to use. Ready to cut it off just like the right was. The right is better but still sore nothing like the left. So that means surgery again or there will be no relief. Goning to make that appt today in philly. Wish I could find a good RA there. The healthcare system is so industrailized now that the docs look at you like a number instead of a paitient anymore. At least thats what I have found anymore. I have a few widowed friends of docs and they agree completely. Thats why they stay with there oldtime docs as much as possible. But a lot of them are retiring also because of the way things are in the field. Anyway......going to start my day and go to work. Than try to met the therapist with the husband about our oldest who isnt going to school. Thats another long story.

[Sangye]

Okay, so about halfway through that I started to feel queasy. Please, do not mess with your drugs alone--none of them! Not only is it incredibly dangerous but it also clouds the picture.

A lot has happened since you went to JHU. I think it's worth a trip back there to see what they have to say. It may be that you are on so many drugs they can't get an accurate picture of what is going on. Between symptoms, the drugs masking symptoms and the drugs causing side effects, it can be impossible to tell. They already know your case history and it would be faster than starting with another center.

Mostly, I just want you to get to ANY center! I'm worried about you.