Update on Debra

[Debbie C]

Well I went and saw my kidney dr. today since my ent put the fear of God into me on my last visit. The ent said since my calcium was a little elevated so I was going into renal failure, and since my balance was off I went and saw a nuerologist ( who said I was depressed ,gave me Zoloft and wanted me to do a sleep study-----I didn't do or take either ) he also wanted me to have a surgeon look a my parathyroids glands. SOOOO, I told the kidney dr. this as he was looking at all by blood work and he said I was fine. My bloodwork and urinalysis were perfect. The glands were fine and told me to cancel the appt. with the surgens and not to take the Zoloft. He said according to my bloodwork I have been in remission for almost 3 years !!!!And I asked him about the nodules that keep coming and going in my lungs and he said anyone can have nodules,it doesn't mean they have WG. It's just that I was tested positive for it doesn't mean every one is from wg.I also asked about the purpura I get, he said that is from taking pred for so long that it thins your skin so any time you bump it or anything will make the blood raise from your arteries.He also said the best thing to take for that is Vit. C (either the pill or fruits ) that will strenthen the arteries and prevent that from happening.Also I asked about getting off pred and he said once one has been in remission for 5 years they should be taken off. And I told him the the reumy at CC told me I would be one it for life since I was not taking anything else and he said NO the protocol is 5 years.And since I have lung involvement that yoga is the best thing to do to improve lung function and other workout to get rid of my "muffintop". I still have 10 lbs to lose before I'm back to where I was.So all and all I had a great check-up. He spent about 1 1/2 hrs. with me. I saw my family dr. the day before and he has me lined up to get a slew of bloodwork done.My hormones for my "hotflashes" and my chlorestal which was bad before I he gave me samples of Crestor to take ( but I never did) so I'm going to wait a little while before I get that done. He also has ANA on the script which I never had checked so we see how good things really are! Sorry for rambling,but it was nice to get some good news.

[Pete]

Great news!!!

[mishb]

I'm glad you finally got some terrific news.

However, I don't like how these doctors keep disrespecting each others opinions.
I did originally think that your ENT guy was over reacting, but now the kidney guy is totally the opposite.

What about your balance problem - has that gone away now?
You seem to be a little devil when it comes to taking medications. I just worry that maybe things aren't all as they appear.

Sorry, little bells are ringing when he says just take vitamin C, or just do yoga. We know these help but is this the real reason and instant fix.

I was going to delete my comments above, because I really don't want to put doubts in your head about the wonderful appointment and news you received, however, as you can see, I haven't :unsure:

What I do find wonderful is that he believes you have been in remission for 3 years - that is absolutely fantastic :hug3::hug3::hug3: and requires a Happy Dance.

[Debbie C]

Michelle, I glad you didn't erase your comment. I want to hear anyone's opinion. I have alot of faith in my kidney dr. more than any other dr. ( I think even the one at CC ) He has practiced in India, London, And New York and has seen alot of weggies ( at least thats's want he tells me) But the numbers can't lie....I have records of my bloodwork since day 1 and thank God it has always been good, so why should I take the medicine that the CC keeps trying on me if it just makes me sick and makes my numbers off. Although I am very bad about taking meds,but I do take my preds and that seems to be all I need for now. As far as the yoga, he was just saying that since I have lung involvemant that breathing excercises would strengthen my lungs and the Vit. C is to help the arteries so the purpura doesn't keep happening. Every dr. is going to have there own opinion on the treatment and I think less is better if possible.But I do think the ent was jumping the gun when he mentioned all those things wrong, as far as my balance it is fine now,I think I may have had a sinus infection ,I don't know, but my bloodwork came back good on my parathyroids so I don't need the surgeans like he said.I have to get a slew of different bloodwork for my pcp and my reg monthly for CC. So we'll see then how things are going. I just take it 1 bloodtest at a time cuz we all know this crap can change on a dime.And please if you have have something to tell me don't doubt yourself just say it:thumbsup:

[drz]

I did pulmonary rehab to help improve my endurance so I think it is reasonable to assume some exercise might help you too. Vestibular rehab also greatly reduced my balance problems and issues and made me fel much safer while walking. Some studies show that about 20% of people don't relapse when they go off their maintenance meds so it is certainly well to try it if a relapse isn't consider a real dangerous problem for you. You will never know unless you try. I think it is best to always get more than one opinion and consultation about any surgery procedure. If I had accepted my first urologists recommendation it would most like turned out far worse for me than the one the second urologist recommended which was also later endorsed by my Weg consultant. Becoming an educated consumer and good advocate for our self is hard work but necessary to protect our health.

[mishb]

Thanks Deb,

I'm glad the balance problem is no longer there.

The happy dance is continuing, for your improved health and your remission
:hug3::hug3::hug3::lol:

[rebekah]

So happy to hear this wonderful news! I'm doing the happy dance with you! :hug3:

[NikkiNicole]

Woo Hoo!! I will join in on this happy dance for you. :hug3:

I know that exercise can help, I just don't know about it being the be all end all. rid of this excess weight myself. It's caused some serious depression.

Hang on to that remission, my dear!! Keep going onward and upward!

[Alysia]

Hi Debra.
wonderful news :thumbup:
and since everybody is alreay dancing here, I can't just stand like that...
I love that weggie dance (good for breathing, good for joints and soul...)
:hug3: :hug3: :hug3: