Neurologic symtpoms related to Renin levels

[waggoner1]

I have been told I have undetectable levels of renin, as well as a potassium deficiancy. My doctor told me there is a "condition" whereby low renin levels leads to low potassium and muscle weakness/neurologic symptoms. -Does anyone have any idea what that "condition" might be?:confused:

I have asthma, was diagnosed about a year ago with a clotting disorder called Antiphospholipid antibody syndrome and have substantially ELEVATED Factovr VIII levels.

I have lots of "unxeplained, weird" :eek: symtpoms that my doctor feels cannot be answered by the above diagnosises. I think I have seen almost every speciality out there. I am now being referred to a nephrologist.

A recent CT of my lungs to rule out another PE also found a 1.5 cm nodule in the right posterior lung base laterally and mutiple nodes throught the mediastinum, primarly in th epretracheal space and subchondral region indicating underlying adenopaathy. They are not sure if it was an inflammatory lesion due to an early pneumonia or something else (also having a follow up CT in a couple weeks).

Obviously, I have a lot going on medically, and no one seems to be able to connect any dots or make any sense out of me. :(

Any thoughts would be appreciated.

Kristina

[Tootsie]

Hi Kristina,
It is always frustrating to have lots of symptoms and no answers that seem to be valid. Certainly, it is more worrisome to know that something is amiss but no one seems to know what, why, or if, it even matters. Diagnosis is not only a science but also an art form. Sometimes it takes patience, not only on your part, but also by your doctors, to gradually gather facts, data, lab reports, and receive your feedback, if any treatment or medication is provided.

Even with all the marvelous new technology, it is not always evident what the underlying problem may be. The standard terms, "Wait and Watch," and "Tincture of Time," are still true.

I have no answers for you, only some encouragement and support as you make your way through the maze of diagnosis over the next period of time.
You do not mention where you live. Make sure that your doctors understand that they have your permission to discuss your symptoms and care with anyone they feel might have some insight. Referral to a large, university based teaching hospital may be helpful. Talk it over with your doctors.

[waggoner1]

Hi Tootsie,

Thanks for your reply. You are right, medicine is a form of art and a lot of trial and error. It took 2 1/2 years for me to get the diagnosis of APS, and I only got that diagnosis after having two pulmonary embolisms, one which was massive and almost cost my life. I spent a lot of time on the MS forum here, as for awhile that what they said I most likely had until all my tests came back negative. I spent alot of time as many people here do, being told my symptoms were all in my head.

I was fortunate to find a wonderful doctor a couple years ago that really listened to me and assured me what was going on was not "just in my head". Unfortunatley, it was the clots that were the missing puzzle piece, and I had to almost die before the answers were clear.

My doctor still believes more is going on, and would like to send me to Mayo. I cannot go to Mayo because I am on medicaid, and they do not accept medicaid from my state. We attempted to go to KU Med Center in Kansas City for answers, but the doctors there seem unwilling to work together on my case to find any anwswers.

I am hoping that whatever else is going on doesn't have to become catostrophic before answers are found again.

Thanks again for your support- you do a great job here.

Kristina

[mrsdoubtfyre]

You might find this article informative:
http://www.netdoctor.co.uk/diseases/facts/conns.htm

[Tootsie]

Kristina,
Hang on to that wonderful doctor! They are a real treasure when you find one that is so supportive and helpful as they try to find answers for you!

As you post here and on other forums, you and your doctor may find someone who has some ideas for you. Certainly there is so much more communication among different medical groups in various locations, than there used to be. It is so much easier to do, using the Internet. Courage!
Cheerio.

[waggoner1]

Hi mrsdoubtfyre,

Thanks for the article link- I did read that article about Conn's syndrome while doing research on the internet- it is the only thing I can find that seems to fit, except that I don't have high blood pressure. It will be interesting to see if that is what it is. Be sure to keep you posted!

Thanks again!