Update: Saw the doc this morning!

[NikkiNicole]

I am printing up things to take to the doctor on Thursday. I've tried not wearing my contacts, but it still doesn't help so I am wearing them again because it's hard to see as good with my glasses. (I hate not having complete vision no matter which way I move my eyes).

[annekat]

Isn't that what we all have to do? Research our own situations!
I am really hoping that there is an end in sight to this pain!!!!

Yep, what other choice do we have? A lot quicker than getting info from doctors. I don't know what people did before the internet. I, too, hope there is an end to your pain, and SOON!

[annekat]

Oops! The condition I was thinking of is TMJ. TM means Transcendental Meditation. Did not google for long, but here's Mayo on it:
TMJ disorders Definition - Diseases and Conditions - Mayo Clinic

And here's the one for Trigeminal Neuralgia:
http://www.mayoclinic.org/diseases-c...n/con-20043802

[mrtmeo]

Yeah, I wrote TM but realized that is something else and changed it to TN for trigeminal neuralgia. But TM involves the jaw, so that could be you, too. I hear it can cause a lot of pain but don't know if it goes to the eye. But the temple is pretty close to the jaw. Sounds like you are making progress getting to the bottom of what it could be, without the help of a doc.

Did you mean TMJ?

[annekat]

Did you mean TMJ?

Yes, I meant TMJ, as explained above with links. So I think Nikki should ask about both TMJ (temporal mandibular joint) disorder and trigeminal neuralgia. The old Weggie brain fog strikes again.

[NikkiNicole]

My dentist looked into TMJ a long time ago but, I didn't have all the factors. TN sounds more like what I have been having. Even with chewing the softest of items I feel like I am going to lose my jaw. Not all the time, just sometimes. My friend has TMJ and I hear her clicking away when she eats.

[annekat]

My dentist looked into TMJ a long time ago but, I didn't have all the factors. TN sounds more like what I have been having. Even with chewing the softest of items I feel like I am going to lose my jaw. Not all the time, just sometimes. My friend has TMJ and I hear her clicking away when she eats.

I know trigeminal neuralgia can vary in severity and amount of pain and mine was less than what you are experiencing. If that's what you have, it is not life threatening, unless it is being caused by something life threatening pressing on the nerve.... In any case, it can be treated by drugs or surgery to alleviate the pain and perhaps remove the cause. Sounds like an MRI might be in order.

[NikkiNicole]

Once again, I have returned to the point of feeling frustrated. TPMT results are STILL not back yet and this is week 3 without my MTX. I don't know if that is why my nose was bleeding last night, or if that is why my nose also feels like someone punched me in the face. Still have a headache (day 26 for those keeping count but it isn't as bad), pressure behind my eyes, my joints screamed at me last night and I hadn't even done anything.
And the kicker???????????

My blood work was perfect. Blood counts all wonderful, ALT back to a low range, everything looked absolutely beautiful. I shouldn't complain. That's fantastic that those levels are good. CRP isn't back yet but I am sure that will be right at the top of the normal range like it was last time. Our tests say it should be under 0.5 and mine was exactly 0.5 last time. I bet it will be the same this time around.

It frustrates me to the point of tears. Something is wrong and yet, NOTHING shows up that the doctor can say "Oh! That's what's wrong." This is how it was back in the beginning of all of this. Everything except my CT and that ANCA test were beautiful. I've always had amazing blood work. Good cholesterol, perfect low blood pressure, etc. So ... WHY DO I FEEL LIKE I AM GOING TO DIE?

I do work a lot, this is true. But, I always have. This is why I know there is something amiss. I have been eating 100% clean and amazing for 16 days. I sleep like the dead when I do sleep and I was just off for 2.5 amazing days.

This makes me feel like I am crazy. I don't like it. I'm so upset.

[mrtmeo]

That's great that your blood work came really good.
With vasculitis, it can effect any part of the body where there are blood vessels and this is what makes it so frustrating when treatment isn't working.
Hopefully, they can try the imuran and see if you can get some relief.
I'm glad the headaches have let up a bit.

What were your symptoms when you first got diagnosed?

[NikkiNicole]

I had a spot in my lung and felt like I was fighting a bad cold ALL THE TIME. The horrendous fatigue, etc. Kind of like how I feel right now. My first rheumatologist said it wasn't Wegener's. My second called the pathologist who did my lung biopsy and was informed that it was. So there you go. I've never been as bad off as others. I am lucky.
However, I am getting depressed over how I feel and there's no escape ........