relapse meds

[hybrid]

Thanks. I am trying to understand all this so I can tell my nephrologist what drug I want. She's a transplant expert, not an WG expert. Hybrid

[jola57]

Lisa I'm with you, I used to suffer headackes without pills now I take whatever I'm given and ask for more (I feel like Oliver)

[Doug]

In the long run, following doctor's instructions is the best thing you can do: his or her evaluation of your progress is based on what you were instructed to do and take. You don't want your doctor changing your medication based on lack of knowledge of how you actually took your pills, for example, if you skipped dosages or over-dosed yourself

Weggieboy’s Blog

[Sangye]

Congrats on your blog, Doug! I really enjoyed reading it. And I love the header image--toooo funny.

[Doug]

The self-portrait is too revealing, I'm afraid, but I liked it, too. My mother said something to the effect it was one of the better photos she'd seen of me. What? Anyway, I'm glad you liked it, Sangye. It was your blog that inspired me to give it a try. I was surprised how easy it was to do. I don't know how often I'll update it. If I have something to write daily, it'll be a daily thing, but more likely, it'll be a "whenever I feel like it" sort of blog. So far it's been fun!

[Carol]

sangye, what are the symptoms of intercranial pressure. I have had 2 eye episodes where I think this was the problem but lately had a headache for 2 weeks, occasionally I have stabbing pains in my head and sometimes feel giddy. I actually hadn't metioned it to my doc. Carol

[Sangye]

Carol, my first symptom was an odd tightness in one upper trapezius muscle (if you shrug your shoulders, it's the large one that extends from the neck to the shoulder joint). I was in the hospital for pneumonia and attributed it to a bad bed. It gradually got worse over 2 days at home, and I began to notice odd vision changes.

When I turned off the lights at night, I'd see little white quarter-moon white discs for a couple moments. Within a day, they became full-moon discs. My eyeballs weres sore--mildly, but not normal for me.

Then I noticed my vision was off-- kind of warped looking, like a funhouse mirror. I saw an opthalmologist who said my optic nerves were swollen (papilledema) and sent me for an MRI.

Papilledema is a result of increased brain pressure, which can be the result of a brain tumor. The brain MRI ruled out a brain tumor, and I wasn't sick (encephalitis) so the only other choice was "pseudotumor cerebri." That means "fake brain tumor." There's nothing in there causing the pressure, but you get the same symptoms as if you had a brain tumor. Fun.

The eye doc had me "wait and see"-- sometimes it goes down on its own. One or two days later, I woke up feeling not right. In about 3 hours I had increasing nausea and headache, then the projectile vomiting started. That's vomiting like you've never experienced-- the skull pressure is so high and building, the body is trying to expel the head. We had to wait until the next day to do a spinal tap (I was on blood thinners), but I was almost blind and nearly died. The spinal tap both relieves the pressure and also lets them test the cerebrospinal fluid for infection.

My vision was crazy for about 6 weeks, and 2 yrs later if I go off the CSF diuretic, the whole thing begins again.

Your eye doc would see papilledema on a simple exam. It'd be good to mention your other symptoms just in case. A brain MRI might be a good idea, even if your eyes are normal.

[coffeelover]

Something maybe worth mentioning.....When I went to see my eye doctor he was angered with me for not seeing him sooner and telling him about having WG. I really had not given it a thought, so anyone with a diagnosis of WG should maybe see their eye doctor right away.

I was so "green" when first diagnosed, but becuase of all of you, I am getting smarter. Thanks
LIsa

[Doug]

Carol-

One of the things we've emphasized over and over on this website is the need to built a patient/doctor relationship where you are the single most important member of the team because you are the one with the most to gain by giving your doctor the most precise description of your condition and you are the only one who benefits directly when your doctor gets your treatment right!

It's tempting sometimes to hide symptoms or ignore doctor orders, but don't! You are dealing with WG. It can maim you. It can kill you. I'm glad Sangye can address the medical specifics with you so you can understand better just how important it is that you talk with your doctor, mentioning anything that might help him/her save your eyesight, for example, or bring it back to a healthy state.

[Cindy M]

My ENT specialist sent me to see an opthomologist because of eye problems. Because of WG's a mass has created behind my right eye. Some days I have little pain in the eye but it is sensitive to everything; light, dust, over use from computers. I also suffer from double vision in my right eye. If I sleep on my right side it is more swollen and painful the next day. He said that they would consider surgery to remove the mass if it does not disolve with the meds.

I then had an appointment with my optomotrist and he said that because of the mass I have 30% movement from side to side and about 40% movement up and down. This would be the reason for my double vision.