6 months and no diagnosis- any ideas? - Page 2

wowosmama · 03-30-2003, 10:03 AM

Thank you very much for all your messages! It's great to know that there are people out there who can relate to this bad situation. If you're going through the same thing, you can't give up; it helps to have a plan. I am not giving up on this doctor yet- at least he is sending me to a rheumatologist and a dermatologist. Hopefully the dermatologist will do a biopsy of one of these subcutaneous nodules. When the blood work isn't saying much, you need a biopsy to secure a diagnosis- actually for a lot of conditions it's the only way to be able to say "you definitely have this". So do it I say! Some of these doctors are afraid to diagnose and afraid to treat, let's just face it.
And yes that was me on the doctor Stoll's message board! The thing is I did read the PDR before I took vasotec. But I have a kidney condition where I leak alot of protein and taking an ACE inhibitor is the only way they know to slow the proteinuria and the kidney damage down. I'd like to avoid ever going on dialysis, so even though I knew the risks I took the drug anyway. I trusted my kidney doc, but once I had a bad reaction to it and became sick, she washed her hands of the whole thing. Moral of the story: before you take any prescription drug be sure that the doctor will help you if you have an adverse reaction.
That is so funny that you saw my post on the other website! Thank you very much for all your messages. they really help!

PS: if there is anyone out there with some form of vasculitis, please talk to me. I'm afraid that's what I have and maybe you can share with me what your symptoms were, and how they diagnosed you. That would help tremendously!

zuzu8 · 03-30-2003, 04:11 PM

Hi -
I don't know much about vasculitis, but this Healthboards site has a great link that might help.
At the top of the main page (not this page, go back to the main board) in a dark blue field are three words: disclaimer, policy and drug info. If you click on drug info, it will take you to a great website: Medline. You can search vasculitis in the top L search box and it'll lead you to latest info from the NIH and other sources.

[This message has been edited by zuzu8 (edited 03-30-2003).]

wowosmama · 05-08-2003, 04:53 PM

Well everyone,

After 7 months of waiting for anyone to do anything, something is finally being done. My doctor put me on a trial of prednisone. There is still no diagnosis but to be trying something really takes the worry away. I've had a good response to it, but the side effects of the medicine are just as bad as I had heard- sometimes the medicine makes you as sick as the illness. I'm about 50 % better with a 40mg daily dose. I tried to taper down to 30mg and had to go back up because of a huge flareup of whatever this is. I have to try and go down to 35 mg in 2 days. Wish me luck! To everyone out there who doesn't have a diagnosis, try and find a doctor who cares. In the past 7 months I've seen many doctors and only about 20% have been interested in helping me. My doctor now is my 4th GP. You just can't give up hope.

HeyThere · 05-08-2003, 05:21 PM

Hi- I read that you have a kidney condition that leaks too much protein- how did you initially find this out? Did you know that ringing in the ears is sometimes caused by toxic substances or things your body cannot handle? I have a really out of the ordinary question for you --without make up what does the skin around your eyes look like-are they copperish?

wowosmama · 05-09-2003, 09:59 AM

Hi! I initially found out about the protein in the urine when I was pregnant for the second time. With my first baby I had preeclampsia during labor, and then a year later as soon as I got pregnant again my BP was consistently around 140/90. I had never had high BP before (other than the preeclampsia) so this is how I knew something was wrong. I had a bad OB/GYN who said I was being paranoid; finally when I was about 4 months along he did a 24 hour urine to get me off his case. It came back 2.1g of protein, that's how they knew I had kidney disease. But they still don't know what it is; the biopsy was inconclusive with trace IgA nephropathy and thin basement membrane on the filtering units (leaky kidneys).
I did know about the ringing in the ears as a reaction when your body is exposed to something it really doesn't like (for me the ACE inhibitor). But the part that I don't get is that I only took the drug for 3 days. And the ringing in the ears really got bad when I got off the medicine on the 4th day. But why would it persist for 7 months? (Although it is better now than at first, and I just ignore it- I'd probably feel strange if it stopped!)
Around my eyes is a little copper colored, although the first thing I notice are darker areas between the eyes and the bridge of the nose- it's hard to tell. I saw one good neurologist who tested me for copper lead and heavy metals in the blood- all negative. Thank you for your message and please tell me more!