Hello,
I have written down my history over the past few years in hopes that one or some of you might comment on whether you think I might have Wegener’s Granulomatous Disease. I have had a number of strange illnesses of late and still do not feel normal. I am a 51 year old female.


2006

Fall - Severe cough – I think the doc said it was walking pneumonia.


A few months later, I had a kidney infection and was given medication for it. Seemed to relieve my symptoms of having to urinate constantly and with little warning.


2007

Fall – Severe cough – walking pneumonia again - had to go on antibiotics twice to finally get rid of it.


Dec.8th – Headache began started as an exertion headache and then became an "all the time" headache.

Dec. 17th – Went to my doctor, she prescribed anti inflamitories and muscle relaxants. They did not help the headache at all. I could not find anything to relieve the headache. Tylenol did not work either.


2008

Jan 2nd – Went to a new doctor as I was desperate to get rid of the headache, he checked my blood pressure, it was 160/140 – he put me on blood pressure medication and the headache finally went away.

Referred me for a CAT Scan to check for a brain tumor. Scan came back negative.


Quit smoking after 35 years, on Feb. 16, 2008 and began exercising most days for 30 minutes min.


Sept. 9th, 2008 – Ruptured the plantar plate in my right foot. Was extremely painful. Wore a soft cast for around 3 months. Balls of my feet and toes are still inflamed and painful on both feet, but I am able to walk. Both feet feel like they could rupture at any time, even after a year and a bit after the initial injury. (Today’s date is Nov. 30, 2009)


Developed strange dermatitis on both legs after a severe sunburn. Scaly, darkened pigmented area developed, extremely itchy area on fronts of leg at ankle height. Other different looking sores appeared about 3 per leg in a variety of sizes. From pencil diameter to about the size of a quarter very itchy as well. Some darkened pigment area remains and one sore on right calf. I am scheduled to see a dermatologist on Jan. 4th, 2010.


Sinus and neck started bothering me – had a very strange episode on 3 different occasions where it felt like something ruptured in the back of my throat or sinus. Had a horrible taste and smell. Happened over around a 2-month period. My doc referred me to an ENT specialist who put a scope up my nose and into my sinuses and said other than the passageway being very tight…he couldn’t see anything wrong.


I then went to my doctor complaining about my neck feeling funny and a nurse friend saying that she thought I should have my thyroid examined. Doc. sent me for an ultrasound of the neck. The results were that I had a single nodule in the right lobe of my thyroid. It was also noted that there was an abnormal lymph node on the left side of the neck that "may be reactive to either focal or systemic infections or inflammation. Abnormalities such as lymphoma and leukemia must always be considered in a differential diagnosis as well as granulomatous disease." (Summary of the report) It was recommended by the Radiologist that this should be investigated to rule out a malignancy.
The Doctor referred me to a surgeon who was not concerned about the nodule at all, said that it should be watched, and sent me on my way.


2009

April I think – One afternoon my right hand started hurting. By that night a nodule had appeared at the base of my thumb, and my hand was virtually useless. I was unable to even open a doorknob with it. I went to the doctors the next day and he put me on Prednisone. Within days, my hand was much better. I remained on the Prednisone full strength for only a few weeks, and then was weaned off of it over the next month or so. I also am having a problem with my knees and cannot bend them more than 90 degrees without a severe, sharp pain. The Doc. referred me to a Rheumatologist. Appointment scheduled for this past early Sept.


Started having chest pain. Felt like the pain I had before my gallbladder and plugged bile duct operated on.
Doc sent me for a blood test and EKG. Nurse/Tech at the lab did not want me to leave, as my heart rate was extremely fast. She said my heart was beating as if I was running. She seemed to think I was having some kind of a heart attack and did not want me to leave the lab. I was on a lunch break and insisted that I was not feeling any pain, and that I needed to get back to work.

The doctor referred me for a stress test – which came back normal.


I started feeling exhausted during any exertion. Started checking my blood pressure and noted that it had gone down significantly. I purchased a BP monitor for home and checked daily. BP was ranged from 90/60 to a high of 110/ 79. I think my BP went down because of the Prednisone. Went off BP medication in June.


Dr. put me on Thyroid medication as I was still complaining about not feeling well.


When I finally got to go in to see the Rheumatologist, he said that I had osteoarthritis and that he felt the problem with my feet was mechanical although there is some arthritis in my big toe on right foot. He said it was still be some time before it was totally better. I also pointed out the marks on my lower legs…he said I should see a dermatologist.
Note- I thought that one only had nodules with rheumatoid arthritis???


I also noticed that I was having to get up about once an hour to urinate during the night.


Started feeling significantly better. Attributed the improvement to the Thyroid medication. Was able to only get up once a night to go to the bathroom.


End of Sept. I started getting an exertion headache again. Pain on any exertion is about an 8 out of 10. Any time my head goes below waist height; I get a severe pain as well.
Hands and knees are still sore.


I have also notice little bits of blood when I blow my nose.


I still have a large swollen lymph node on the left side of my neck, that now has migrated to under my jaw going up towards my chin on the left side. It was much worse a few days ago…


I have also had chest pains again recently…I have not had them for over 8 months until a few days ago.


I also get horrendous leg cramps (since 2005) that will wake me up several times a night. Not every night, but often enough to be very annoying and painful. The last time it happened, I had an extremely difficult time walking it off.


My abdomen also feels strange a lot of the time. It almost feels like my internal organs are being squeezed. If I have a drink of alcohol, my kidneys will be sore in the morning when I wake up.


The eye specialist has also been monitoring me as a "Glaucoma suspect" for the past several years, and I also have the beginning of cataracts.


In Conclusion

I have been trying to figure out what is wrong with me so was reading the previous ultrasound of thyroid report from Oct. 2008, and decided to look up "granulomatous disease" as mentioned by the Radiologist in the report. I feel that I have many of the symptoms of Wegener’s Granulomatous. I also called my 62 year old female cousin to discuss a medical condition called Temporal Artereitis that my mother said that my cousin has. I told her that I thought I had Wegener’s and she said, that was funny, that is what our Aunt died of – our Aunt was on dialysis for over 8 years, and died at almost 80 years of age of kidney failure. I had no idea that she had this disease.
Coincidence or ?
I have read that there is a genetic predisposition for Wegener’s.
I am about to go to the doctors, whom I think is getting tired of my complaints, and am hoping to attempt to explain all of this to him. When I was in to see him a few months ago and mentioned that the exertion headache was back, he said he didn't think I needed to worry about it. I am worried though, it hurts me way to many times in a day. I'm tired of having to think about every move, every cough etc.
I don’t think that I have a severe case of this disease, and I realize that the medication to put this into remission is probably worse than the minor symptoms I have….by minor, I mean that I don’t feel that they are life threatening at this time…just very annoying and inconvenient for me.
Hopefully this makes some sense.....Any comments would be appreciated.