Looking for advice from Canada

[Terri2]

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.

[Jack]

What a complicated tale!
From your description, it could be Wegener's, but not in its usual classic form, if such a thing exists. If you read the posts on this forum you will find that it affects everyone in a slightly different way which makes diagnosis so difficult.
I would suggest Wegener's to your rhumatologist. There are are range of blood tests and biopsies that can be done to help diagnosis although none are absolute.
If whatever you have responds well to steroids, this may be the route you have to take. If it is Wegener's, be prepared for some other nasty drugs to go along with them.

[elephant]

Welcome Terri2, It certaintly sounds like wegener's, but like Jack said you need to tell your rheumatologist as soon as possible. You did a good job of logging you medical info, keep it and give it to the doctors to see. I myself had the same symptoms you have/had.

[Doug]

Terri2, You need to consider locating a specialist (rheumatologists, typically, but could be ENT doctor or pulmonologist- if there are other, someone on the forum will comment) whose practice involves lots of experience with Wegener's granulomatosis patients because there is a tendency for specialists to see things through a narrow point of view that may not include WG as a possible illness. Even then, well-meaning doctors with little experience may or may not hit on appropriate drugs or treatment levels appropriate to you illness. If you come back and note where in Canada you live (province may be sufficient, but city can be too), there are other Canadians on this site who may be familiar with specialists close to you.

Read through the materials in this link, especially the section labelled Newly Diagnosed (in the brown-highlighted section at the top of the first screen, second from left). When you pull up that screen, go to the righthand side where you'll find a section labelled About Vasculitis: Our Online Resources. Go seven items down to Questions to Ask Your Doctor. That'll give you some preparation for your visit to the rheumatologist.

Prednisone is half of the most common treatment for WG (cyclophosimide- if I spelled it right!- AKA Cytoxan is the other half), but it doesn't work all the way on its own. It more typically increases blood pressure, and it would have helped temporarily for the symptom describe.

http://vasculitisfoundation.org/

Your chronology of symptoms, doctors seen, etc. should be very helpful to the rheumatologist when you see him or her. Give yourself an A+ for being so organized! Good for you! And good luck getting to the cause of your issues.

[Terri2]

Thanks, Jack, Elephant, and Doug. I really appreciate the quick responses. I also should have added that the inside of my mouth feels a bit swollen lately...which means that I often bite my cheek and tongue...so my mouth is sore...but even where I don't chew on it it is sore, and my eyes have recently become bloodshot. This is unusual and new, having only appeared over the past couple of weeks.
I have read many of the postings on this site, which is why I decided to post my information. You all seem to be very well versed in this disease...obviously you need to be, and I'm excessively pleased that someone has responded to my query. My symptoms make this whole thing pretty hard for me to ignore, although I do work fulltime, and I have a million other things I'd rather be thinking about.
As far as doctors, I have seen the ENT, the Rheumatologist, the heart specialist, the surgeon, as well as my GP. I live on Vancouver Is., in British Columbia. It is almost impossible to get in to see a doctor here. Even to see my GP I usually have to wait 2 weeks for an appointment. I would say it takes on average 9 months to a year to get in to see a specialist. As I have seen them already, it's unlikely that they will see me again, and definitely not any time soon. I'm feeling pretty frustrated..as I'm sure my Doctor is, as well. I would be happy to just go away, but feel that I shouldn't. I'm going to ask him to try to find someone who is familiar with the disease and send me to that Doctor...whether it be a GP or a specialist. I wonder if the Dermatologist would be familiar with the disease? I have been waiting many months to see one, and I am scheduled for Jan. 4th.
I have read information on Vasculitis, but haven't read that it can be an exertion headache, like I currently have. I'm really hoping that this does not become an "all the time headache" like I had before! It is on one side of my head, around my temple, maybe a bit above.
Thanks again for your responses, I really appreciate them!

[Jack]

Bloodshot eyes is another Wegener's symptom.

You really can't afford to wait too long for a diagnosis on this one in case it turns out to be Wegener's so you are going to have to push. I'm afraid it is not only a fatal disease if untreated, but can catch up with you real quick. I myself lost my kidneys because diagnosis was too late to save them. There were hardly any symptoms from this involvement, but within a couple of weeks I was on death's door!

Sorry to sound dramatic, but this is not a condition to be taken lightly. We have already lost a few members associated with the Forum, mainly through poor standards of treatment.

[Sangye]

Terri, some of your symptoms sound like Temporal Arteritis and some like Wegs. It certainly warrants getting the proper testing done.

In regards to your concern about the treatment being worse than your present symptoms: If you do have something progressive and potentially life-threatening like vasculitis, treating it early is much easier than treating it once it's advanced and done more damage. Often the milder drugs can be used-- or at least lower doses of drugs like pred-- when it's caught early.

Hopefully more of your fellow Canadians will chime in with advice about getting proper care quickly.

[onatreetop]

Wow! You have been very busy. From what I have learned as a new dx's this year and from all of these great people you could have Wg and other issues.
I had very few signs and was caught early. I am still being treated and am greatful that the RA I had was aggresive and did a ton of blood work then catscans mris and ultrasound of kidneys. He found it in a week. As far as I am concerned the man saved my life. The symtoms I was complaining of where not horrible and I could have let it go on for along time I am sure. But he caught it.It is never to soon to treat this either. The progression is unpredictable and scary. I am happy to have gained most of the use in my hands back. The nodles in my lung are tiny and hopefully will stay that way. The treatment can help and will when you find the right doc and dx's.

[Terri2]

I have been doing lots of reading and found another interesting symptom that I have had....
Trichiasis or commonly called "Inverted Eyelashes"- I went to the eye doctor in town here and he plucked out the offending eyelashes. They have not come back. They were VERY annoying while they were there. Could hardly open my eye.
Also, I didn't tell the doc this cause it was just too weird...I woke up one night and ran for the bathroom, and kind of spit/vomitted a bunch of red stuff into the sink. I have terrible eyesight, and didn't have my glasses on. I had been eating red licorice, and wasn't sure if it was blood or red licorice. I'm thinking it was blood. It was a very bright red colour. I decided that I wasn't going to freak out about it, and that if it happened again, I would go to the docs. It never did, thank goodness...but it was around the time that I was having weird sinus things happening as mentioned in my first post.
Has anyone had the feet problems with this? Any rupturing of the little cushiony sacks in the toes and balls of the feet? Or do you think this is unrelated? I have also developed many veiny patches on my legs, and over my knee joints...it's all very strange. Also, has anyone else had the exertion headache? Not to be confused with the "all the time headache"... ?
This exertion headache is driving me nuts!
Doug, I did go and read the information on the vasculitisfoundation site...very interesting!
Thanks again everyone for all your replies.

[Jack]

Skin problems - yes another Wegener's symptom. They seem to come in all sorts of shapes and sizes. I had things that looked like warts, calluses and blood blisters that used to burst and make a mess. They were mainly grouped around my joints, but also on my fingers.