Sangye's Status

[pberggren1]

Sangye, I am glad the Otologist was on the ball and ordered the MRI right away. What is nystagmus?

[Sangye]

The MRI wasn't urgent. He wanted me to do it within a month. It's just to make sure there isn't a problem with the inner ear.

Nystagmus is an involuntary movement of the eyes. They flicker or sometimes track back and forth.

[Fran]

What an awful ordeal for you in that heat too - my heart goes out to you with all the complications you put up with. This nystagmus, has it been caused by that labyrynthitis you suffered a while back as I see on google it is a probable cause, or other mitigating medical problems (or combination of both) - because, oh boy did I get off light, when I had it - just a short course of prochlorperazine and that was more or less it apart a few hearing probs. which are nothing compared.

Rest up, keep cool - Hoping you can get some real respite with your health very very soon Sangye.

[Sangye]

Thanks Fran. The nystagmus in the left eye shows that the left vestibular (balance) nerve is hyperactive compared to the right. This effectively "proves" the vertigo is happening. It also helps differentiate the cause of the vertigo. Even though the otologist and vestibular PT believe me, it sure is nice to have some objective evidence of something that is usually just a subjective complaint.

I've had enough skeptical looks from docs lately regarding other subjective symptoms-- one of the most frustrating parts of Wegs for me. It's not enough that you have all this going on, but then you have to convince them that it's happening and that it's as bad as you say it is.

[DEE]

I never wish any harm to anyone really, but I sure wish sometimes that some doctors, nurse practioners, and medical receptionist could just have a little 'taster' of wegener's and it's various bounty !!

MY HUBBY SAID THAT LAST WEEK WHEN WE WENT TO HOSPITAL APPOINTMENT AND THE CONSULT DID NOT SEEM TO BE LISTENING
HE SAID HE SHOULD TRY BEEN YOU ON A BAD DAY AND MAYBE HE WOULD LISTEN THEN
SO SANGYE YOU HAVE MY SYMPATHY I YHINK I KNOW WERE YOU ARE COMING FROM
EVEN WORSE IF THEY THINK THE SYMPTOM DOESN NOT FIT
PLEASE TAKE CARE OF YOU

[Fran]

I don't wish anyone any harm really, but I sure wish that some doctors, nurse practioners and medical receptionists could have a 'taster' of wegener's and all it's various bounty !!

[Sangye]

I think we've all thought that at times, Fran!

[Sangye]

Well. Score another one for Sangye.... Since we increased the lasix (diuretic) a couple months ago, I've been telling Dr Seo that my potassium is going too low-- maybe not everyday, but a lot of days. Eating a banana isn't enough. He kept insisting it was fine and I kept insisting it wasn't. Finally a couple weeks ago he agreed to test it every 2 weeks to look for a trend. He didn't want to prescribe potassium before that, since too much potassium can cause problems, too. Okay, fine, but I've been in bad shape.

I did labs on Monday and just heard from his office that he's calling in a scrip for potassium. Potassium deficiency can cause muscle weakness, fatigue, edema, sodium retention, headaches, irregular heartbeat-- sound familiar?? These are all symptoms I've not been able to get under control for weeks now. I'm still on a (very) low-salt diet, but the smallest amount of salt that I have causes huge fluid retention.

Dr Seo is a great doc, but I own the body and know when something is off. Don't let anyone tell you they know your body better than you.

[brocky99]

hi sangye hope you feel better soon. you definately seem to be going thru it at the mo. U have so much knowledge about this disease and it symptoms im just glad u know your own body and can tell the doctors how u r feeling and what u think the problem is, we learn so much from you on this forum. I know when i feel different but sometimes its not cos of the wg i just need to learn to understand what means what. I need to stary looking into the dialysis machine now its tells u so much but seems so complicated, an going to ask in a few weeks once i get used to doing 4 hrs the dr last week said i wasnt dialysing very well so want to know why really.

[elephant]

I was on potassium pills last year and that is when I was on high dose's of prednisone. Yes we know best!