Is it in my head??

[stikker]

Do you ever start to think your crazy and you're imagining things.

After cytoxan, I've had trouble finding a drug I can stay on long term. (AZA =head aches and fevers Methotrexate= hair falls out in clumps) After about 6 months of jumpng from 1 to another I am finally on Cellcept.
I don't think t's working for me. Now increasing hearing loss, mouth sores(new) and muscle/joint pain returned. It has now been decided that it's a flare. They increased cellcept to 3000 and pred to 40(I'm miserable).

Now I have eye pain. A nagging pain in the back of my eyeball. I ignored it for a couple of days, but it isn't going away. I finally emailed them today. They don't think it's wegs but want me to see an opthamologist. My eye isn't red, vision is fine.

My point is, this is my first flare. I'm starting to feel like I'm being too sensitive to things. I am afraid of letting the disease get a foothold back in, so I'm over-reacting to things. This will only hurt me in the long run. I'll never get off the meds if I keep developing new syptoms every month.
stikker
Anyone else feel like this?? These symptoms are so vague and non specific. It is starting to make me crazy!

[pberggren1]

It is not in your head unless you are having headaches and sinus problems and things like that. All of your symptoms that you list could certainly be Wegs but only your Wegs specialist will know for sure what is going on. You do see a Wegs specialist, right? I forget what part of the country you live in.

[stikker]

I see Dr Merkel. I'm from Massachusetts. I couldn't do this with out a specialist!

[pberggren1]

I see Dr Merkel. I'm from Massachusetts. I couldn't do this with out a specialist!

Merkel is one of the best when it comes to Wegs so you are in good hands.

[elephant]

Just let him know what is going on with you. You know your body more than anyone and if you feel deep down that things are going on they probably are.

[Sangye]

I understand the self-doubt. I'm doing that lately and I've done it before with active Wegs. It helps me to keep a daily log of AM/PM symptoms and my med dosages. That lets me see the symptoms that don't change over long periods of time vs the ones that come out of nowhere.

[ScreaminMeanie]

That's a good idea, Sangye, and something I should probably do. I go back and forth between freaking myself out over nothing, and completely ignoring things that could be truly serious. Neither is a conscious decision, so it would really help to keep a log to track trends. Drug dosages and even what I ate that day would probably be good information to include. Level of activity, stressful events, I can think of all kinds of things that would be good to keep track of.

[Sangye]

Yup, I include all that. I made a Word table and it takes about 2 mins a day to update it. It's been one of the most helpful things I've done for myself.

[NicShaf]

I do a similar daily update in my date book...I'm not as tech savi as I'd like to be. It has been especially helpful for me since I am in the beginning stages of my diagnosis and treatment. I keep track of all the things mentioned above, and when I meet with my doctors, I can go over everything. Great suggestion Sangye.

[ScreaminMeanie]

Sangye, would you mind sharing the "framework" of your table? If you wouldn't, I'd love if you could email me the table structure minus your personal data.........you've got your ducks in a row more than just about anyone I know, and I hate re-inventing the wheel.