Feeling okay but Confused

[jude mack]

Hi Everyone

I saw my rheumy last week, I wasn't going to post, but I'm so confused about everything. Some may remember my dx was changed a couple of times in the last 13 years. I now have a great rheumy and I really like her, but my list of goodies keeps going up.
I'm feeling somewhat better compared to last year, tappering off Pred, that is encouraging. BUT my hair is falling out and I have sx I didn't have before. Like really bad muscle pain/spasms and much more deppression.

I have to have an Echo, EKG, Lung function tests and two more test I can't even remember, I have a cough, shortness of breath and she said it is definately not my asthma, as my lungs are clear. She led me to believe I may not have asthma or something like that.

Next month I finally get in to see a neuro, God only knows what he may come up with. I'm afraid to even go back to the doctors, in case the list just keeps getting bigger. I know I need to know all my problems, but this is getting overwhelming. I also know I shouldn't complain, I am being treated and my body feels better, but my brain doesn't. I just want to cover my head and pray everything just goes away. Any suggestions would really be helpful. style_emoticons/<#EMO_DIR#>/Thanx.gif

Stay Well
Jude style_emoticons/<#EMO_DIR#>/flowers.gif

[raggedyann1]

Jude,

style_emoticons/<#EMO_DIR#>/hugbetter.gif

Sometimes with lupus there are no easy answers. I think I continued to develop new symptoms for almost 2 years after I came out of remission. In spite of some things getting under control other issues kept cropping up. Did your rheumy add any medications to your treatment regimen? Try a prednisone burst to get the hair issue under control? Every rheumy has there own way of doing things. My rheumy continued to add medications or increased doses of meds till finally things calmed down kinda sorta.

It wasn't till February of this year that I finally felt stable for awhile. That is 3 years from the time I got sick again. I certainly hope it is not this way for you but wanted you to know that you probably aren't that unusual. Those of us that are complicated are hard to keep stable.

Let us know how you get on.

Take care,
Karen

[jude mack]

Hi Karen

Thank-you, I'll try a Pred burst. No she hasn't added anymore meds as yet, she is still hoping the Plaquenil
will help with the APS. I guess this last year has been such a windwhirl of doctors and tests, I guess I am just tired.
I'm sure once all the tests are done and I am more sure of what is going on, I'll be okay.

Stay Well
Jude style_emoticons/<#EMO_DIR#>/flowers.gif

[helloos]

Hi Jude.

I know how you must be feeling. A little time ago, I mentioned to my doc that I thought that my asthma was getting worse because I was out of breathe. He had me describe it. I said just when I walk up/down stairs I am gasping like I ran the track. He explained that the out of breathe/worn out feeling was not asthma related. That is when they ran the d dimer test and made me go to the hospital to see if there was a clot because the test was positive. Nope. There wasn't one. Panicked for nothing, but glad they were on their toes. So that breathing problem became an on and off experience with no clue why, except some people on here have the same thing and testing is fine. I think it is all related.

I hope that nothing is wrong and that you are just experiencing what most of us do with no complications. However, if something should show then best to catch it at the beginning. ( I know you already know this )

I will be praying that all will turn out fine. Just try to hang in there and go with the flow. The tests will come and go and you will be able to put it all behind you.

Hope you feel better today !

[Ms.Louise]

Well Jude,

Being you replied to my post , I figured I'd reply to yours.
Although like you, we all want to know what we each are dealing with,
I have come to appreciate that it doesn't really matter here , we are all
in pain, have questions and complaints. I hope you find your answers
soon. Feel better.


Sincerely,

Louise

Thank you for your reply.

[lisade]

Hi Jude,
It got like for awhile there everytime I went to the doc I came up with another diagnosis/problem. In the last 6 months I've seen so many doc's that I'm on a first name basis with a few of them.

It will get better, we seem to all go through periods that are worse than others. I can truly say that all my doc visits have paid off because I am feeling much better than I did 6 months ago.

My thoughts and prayers are with you. Hang in there.