Quick question on pain..

[debra]

Joni, thank you for this. It means a lot to me... Not a lot of this in my life, that's for sure... I do care, and you're very sweet, Joni... I am praying for you guys, Joni. Deb.

[mishb]

I was so thankful that blood was found in my urine.......

When I was diagnosed by my ENT, he didn't want to start me on any other medication. I was already on some stuff for Rheumatoid Arthritis.
He wanted to send me to one of the big hospitals in the City, that has a proper vasculitis outpatients centre and let them do the treatment protocol
It turns out that his son is an ENT at this hospital.
Anyway, it took 6 weeks to get in and then the ENT there wanted to do a sinus biopsy to get a proper confirmation. which thankfully was positive.
This ENT department still didn't want me to start any other medication (than the RA stuff I was already on) until I saw the Rheumatologist, which was another 4 week wait.

When I finally saw the rheumatologist, he ordered xrays and bloods and urine test, all of which I had been doing each week, and this time there was protein and blood casts in the urine test, there and then they put me straight into hospital and started the pred and MTX straight away.

Why am I thankful there was blood in my urine test - because WG was finally taken seriously and I started to received the correct treatment for it, and my kidneys are working just fine, not 100% but not a WG issue.

I am now in remission, and Joni, this is what is going to happen for your son too. His treatment is going to work, and remission will not be too far away.
Drink drink drink, water water water, and go to the bathroom often. Just as Birdie says.

All the best for all up and coming infusions

[debra]

Michelle, hi... Couldn't sleep as usual, so... Michelle I seriously just marvel at how different things are there verses here! Oh my goodness its just nuts! I thought blood, actual visible, with a high fever with new symptoms, would finally get me into something for treatment, but no! Even with the new added lung pain for a month. No, nothing... My labs clearly state the abnormalitys, and next to color this last set says amber. Amber urine? I guess I'm just venting here, and a little jelouse as you're health care there seems to Realy rock... Michelle, glad you're well. Joni, stay vigilant, and remember you're son is getting treatment pretty fast, so this is Realy good.... All the best. Debra.

[Birdie]

Drink drink drink, water water water, and go to the bathroom often. Just as Birdie says.

Hopefully I'm starting a trend. It's poison, literally, poison. It's done it's job once it's in your urinary system. Get it out now, and later, and keep doing it. One of the most important things a patient is entirely responsible for doing. Broken record...

[mishb]

Hopefully I'm starting a trend. It's poison, literally, poison. It's done it's job once it's in your urinary system. Get it out now, and later, and keep doing it. One of the most important things a patient is entirely responsible for doing. Broken record...

Definitely not a broken record, it needs to be repeated over and over again, for all newcomers.

It sure beats the alternative

[Middlesista]

Middlesista, I asked Kyle how it was.. Then he asked me What is it? I told him that on our forum you had asked.. I had read on here someone had said to get copies of blood tests results or test results.. I asked him if he was getting copies..and of course he wasn't. I really hope I'm not overstepping my boundaries of getting information from him about his disease. I'm just really trying to understand it and what is happening to him.. Also, for you or anyone else who reads this post.. Has anyone else in your family had any other kind of autoimmune disease? I have psoriasis which is one and I wonder if any of this is linked together.. I believe in my crash courses of chromosomes over the summer, I read that both diseases are on like chromosome 6??? I wrote it down in one of my notebooks that is somewhere in my, getting back to normal after Christmas, house...

you are advocating for your son - I would do the same thing and as long as he is on board it is a good thing.

Yes - my family does have other auto immune issues. celiac , psoriasis, polymyalgia rheumatica come to mind. Read study where 3 people in one family had it but most info will say not inherited. Still need to know a lot more about this disease

[debra]

Joni, hi. I know I mentioned about other autoimmune issues, so I won't repeat that, but yes get copies of the labs!!! If he's not, not sure you can, since he's over eighteen. These labs, copies are you're right. It's the law. Many times, things are overlooked and you will be the one to spot em. Doctors aren't perfect, and make many mistakes so... Also you/ he can spot upward trends, downward trends by comparing the past labs, ect. Good luck Joni... Deb.