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RudiK
05-26-2011, 11:07 AM
Hello everyone, I'm new to the forum. I was diagnosed with WG about seven weeks ago after spending nine months going from doctor to doctor with various illnesses.
First my left ear was "plugged" up - nothing physically wrong - ENT didn't know what to do. Then severe pain in my right shoulder - MRI showed nothing physically wrong - Orthopedic prescribed taking two Aleve, which didn't help, the pain went away after about a week. Then total numbness in my left arm, which lasted abou 10 hours and went away. Then loss of energy - doctor prescribed vitamin B12, which didn't help. Then a persistent dry cough, sometimes accompanied by blood-laced phlegm - doctor prescribed cough medicine and had no answer for the blood-laced phlegm since the xray was clean. Then a loss of all feeling in both of my feet, they are still totally numb, neurologist diagnosed it as the result of a mild case of epilepsi. Then the weight loss, in three weeks I lost 19 pounds. Looked for and found a different internist. This proved to be a challenge, since the first seven or eight doctors we contacted would not accept new medicare patients. March 31st was my "lucky" day. We found a doctor who accepted me as a new patient and had seen these symptoms before. She ordered a full blood panel (8 or 9 blood samples, 19 different tests) and brought in a nephrologist. They recognized the illness. I spent four days in a hospital, and received three blood transfusions. I was prescribed Cyclophosphamine, Prednisone, Sulfameth, and several other medication to counteract any side affects.
Besides both feet being numb, I do have some kidney damage, and a partial loss of feelings in my right hand. The bad cell count has gone down to about 30% of what it was at the beginning. The doctors are now trying to stop any further deterioration of my kidneys.
After reading the many posts in this forum I consider myself lucky that I don't suffer any more ailments besides the ones I have.

Rudi Kuehne, El Paso/Tx

pberggren1
05-26-2011, 11:12 AM
Welcome to the Forum Rudi:

I hope you are taking something like Zantac or Nexium to protect your stomach from the pred.

RudiK
05-26-2011, 11:19 AM
Hello Phil: I'm taking 40mg of Pantoprazole.

Chris G
05-26-2011, 11:21 AM
Welcome Rudi. For some of us, just getting a diagnosis, is such a challenge with this disease! I have no experience with kidney damage, or with ctx, but many here do. I know they'll be along shortly to offer advice, and to recommend proper specialists :wink1:

drz
05-26-2011, 02:03 PM
Welcome to the forum. Unfortunate your case sounds rather typical. Some of us stumbled around from one doctor to another for two or three years or even more before getting a diagnosis. So some would say you are fortunate to get a a diagnosis before it became life threatening. Good aggressive treatment saved my kidneys and they recovered eventually to 50% function so hope you do even better. I had neuropathy from diabetes long before I got GPA (new name for WGs) and the GPA made it worse but treatment can help although sometimes it is slow. Just depends upon how much nerve damage is done. They can test the nerves but it is a very unpleasant and painful procedure. I have had it done twice and probably won't repeat it again if I can help it.

You will find this forum to be a great source of info and support so post questions and concerns freely and enjoy the camaraderie.

Sangye
05-27-2011, 01:12 AM
Hi Rudi, welcome to the group. Yup, I agree with the others that getting properly diagnosed can take a long time. Here is some info especially for you: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

I recommend you find a Wegener's specialist even if your treatment is going well at the moment. Wegs is famous for not going as planned and for being quite sneaky. Regular docs are not skilled enough to manage it long-term.