Looking for advice from Canada

[elephant]

Terri2, I also had the eyelashes in my eye. The eye doc had to pluck them out. It was due to the prednisone. Be persistent with your doctors about your health care, any blood coming out of any orifice needs to be addressed. I have some weird skin (raised red areas) lesions too.

[Sangye]

I had chronic skin ulcers on my shin-- took well over a year for each to heal. They were extremely painful, vasculitic ulcers. Very difficult to get them to heal--docs never knew how to treat them, since they're familiar with diabetic ulcers.

Before my Wegs got diagnosed, I had odd problems with my toes. The "little cushiony sacks" would get very red, hot, swollen and itchy. But if I tried to scratch them it felt like they were full of chopped glass. I've noticed that symptom begin to return when the Wegs is flaring. Also, if I eat too many "fire-producing" foods it happens. That's another topic...

[Terri2]

Thanks again for your responses everyone. I just hope the doctor doesn't blow me off. Last time I asked if he thought this exertion headache was something I should be worried about and he said "no" he didn't think so. I am going to write everything down that I want to say to him point form, and just go through it. I don't go until next Monday. I did read the info about questions to ask the doc on the Vasculitis page btw...
On a different topic, I finally made my mind up and got the flu shots...BOTH at the same time. I was pretty leary about getting any of them as the past 2 times I ended up sick. My sis said that she had been told to take a non-drowsy Claratin before the shot...which I did. It's now almost 2 days since the shots, and other than a bit of a sore arm, I'm okay! I decided to get them because I am worried about developing a cough with this exertion headache....I think that would be unbearable.
You people are amazing btw...thanks again!!!

[Terri2]

Hi again,
So I went to the doctor last week, he ordered an ANA test and an ESR.
I went back today to get the results. He said the ESR was low and the ANA was negative.
He is now referring me to a neurologist. In the meantime, I still have all the same symptoms, of which the exertion headache is the most annoying. I sure wish someone would figure out what the heck is wrong with my head.

[elephant]

Sorry Terri2 that your not feeling well. The headaches are from the Wegeners disease. Wegeners effects all the blood vessels. Is your blood pressure good. I have a blood pressure machine at home and check it twice a day. My blood pressure is up and down. Just keep being persistant. Many doctors don't count on the ESR and ANCA. It's the whole picture and how you feel. Hope you feel better soon.

[onatreetop]

Hello! Know the headache and hate it. Makes it hard to do anything. My doc gave me floicet and darvacet to try and dull it. It did. My pressure was up to so they adjusted that too. And lots of water! The way we sweat I had to force myself to drink more water and it did help also. When I dont drink enough it starts creeping back. Hope that helps you and you feel better soon. Going to get some water right now! Good Luck!

[Sangye]

I can't assume that the headaches are from Wegs. I think it needs to be thoroughly checked by two specialists-- a neurologist and a chiropractor. See the neurologist first and get a proper workup. A brain MRI would be good just to make sure everything is okay. If everything checks out at the neuro, then go see a chiropractor. Cervical (neck) misalignments often cause such headaches. MDs won't be able to diagnose or treat that.

I usually recommend a chiropractic evaluation before a neurologist for most things, but in this case I think it's best to have things ruled out first. Chiropractors usually do a more thorough neuro evaluation than most docs, but they're not likely to order a brain MRI.

[Terri2]

Hi everyone,
Thanks again for your replies....
I have had this headache during the previous two years. It seems to start as an exertion headache and then becomes an all the time headache. So far this time it's just during exertion. The first time I had this headache, it lasted for over a month before I went to a new doctor (the one I have now) who checked my BP, determined it was way to high, and put me on BP med. That seemed to take the headache away. He also referred me for a CAT scan of my head....by the time I got in for that, several months had passed. He was looking for a brain tumour...and there wasn't one. I don't know if they would see anything wrong with the veins in my head...expecially seeing as the headache had gone away by that time. He also sent me to physio as my neck and shoulder were bothering me and I think he thought the headache was from my neck. Last year, same thing...headache started up....so he sent me to a chiropractor. If I didn't have any other symptoms I would be more likely to believe that it is from the neck...
My BP is now actually low, but it does tend to fluctuate. It will be interesting to see if this headache gets worse if the BP goes up again. I hope not, I worked hard at getting it down by quitting smoking after 35 years and exercising daily.
So now I wait on the dermatologist appointment in early January, and then the Neorologist. Hopefully one of them can figure out what the heck is going on with me....I'm starting to feel like a hypocondriac...(but I'm not).
Have a good day everyone!

[Jack]

If you let them, the consultants will want to refer you to specialists in all the areas that you are having trouble with, but the root cause of everything may well be the Wegener's. Get that under proper control and all the other symptoms go away.

[Terri]

Hi Terri,(nice name)
I can tell everytime my blood pressure is up because I get one of those exertion head aches. Not nice at all.
When I was reading about your symptoms, before you even mentioned about the thyroid I was thinking it reminded me of my co-worker who complains of some of the wegener's symptoms but she has something going on with her thyroid and she also has Grave's disease.She has dark, thick patches on her shin and she has problems with her feet especially in the morning.
She also is over anxious most of the time and has the bulging eyes.
Hope they can diagnose you soon. At least when a name is put to your feelings it can help with some of the frustration.