PDA

View Full Version : Newbie, not diagnosed yet



PainfulGirl61
01-25-2013, 12:43 PM
I guess I should introduce myself. I had some blood work done and it came back possible Lupus. I haven't had the follow-up tests yet - it's so hard to get a doctor's appointment. What's up with that? I was thinking it was pretty serious when the doctor that ran the tests actually called me (yes, on the phone!) to give me the results. That's never ever happened before! If I ever get an appointment for further testing and get results, I'll be sure to update this thread...

I have a question about the message board for any staff members lurking around...

I originally tried to register to the forum and as soon as I did, I was banned for being a spammer. I didn't even try to make a post yet! I emailed to ask what the problem was and nobody ever answered me. :(

So I re-registered after waiting a few days and I've been reading and trying to learn about Lupus (I know nothing about Lupus!). I tried to make my first post today and it needed to be checked out by a moderator (I understand this having run a message board before). But the post never made it to the thread. Am I doing something wrong on this forum? I'm not trying to sell anything or bother anybody... I'm just a person who might have Lupus and looking for a place to learn about it and possibly get some support...

Thanks all! You've got a nice informative message board here... :) I hope I can participate!

rob
01-25-2013, 06:09 PM
Hi PainfulGirl61,

I'm sorry you had trouble signing up. We do ban spammers here on a daily basis, but the banning of a legitimate new member with zero posts or threads is something that has not happened here before to the best of my knowledge.

In regards to your first post needing to be approved by a mod, that's normal for a new member's first thread/post. It's one way we keep spammers from posting links to what they are selling. However, your post not showing up at all should not happen.

Mistakes were made somewhere, and I'll be looking into this further to make sure it does not happen again to anyone else.

I apologize for all the inconvenience. Thank you for your patience, and welcome to WHL,

Rob
Moderator

ItsLupus2007
01-25-2013, 06:55 PM
Welcome PG61!

I say Welcome also and hope that you are able to get into the Dr soon and find out some concrete answers.I imagine it would be terribly irritating and kind of be frightening to be called and then be told to hurry up and wait!One suggestion may be to call and see if they have a cancellation list that they can put you on to help speed up the process of getting you in.It may help to get you in a little faster.

Be well!

tgal
01-25-2013, 07:58 PM
Hi and welcome to WHL! We are glad to have you! As Rob mentioned your first couple of posts will need approval but after that they will show up automatically. We had to put some new measures in place due to an influx of spammers that hit is a few months ago.

Glad you made it in and sorry for any trouble that you had. I look forward to getting to know you!

PainfulGirl61
01-25-2013, 09:31 PM
Welcome PG61!

I say Welcome also and hope that you are able to get into the Dr soon and find out some concrete answers.I imagine it would be terribly irritating and kind of be frightening to be called and then be told to hurry up and wait!One suggestion may be to call and see if they have a cancellation list that they can put you on to help speed up the process of getting you in.It may help to get you in a little faster.

Be well!

Thanks for the welcome!

I have a unique situation. I'll get back to that in a minute...

I started out with back, hip and leg pain. Went to my family doctor, then an orthopedic doctor, then a neurosurgeon (even had an out-patient surgery a couple of years ago). My insurance wouldn't cover another back surgery, so I had to resort to going to a "pain clinic" to try to get some relief. After the pain clinic doctor asked lots of questions about all of my medical problems (and there are lots of problems!), she said she wanted to do some blood tests. I had an appointment to go back for my results after Christmas.

This is where my unique situation comes in... I travel for a living. I never know what city or state I am going to be in or for how long. I go when they call and leave when the job is done. I had to cancel that appointment for the results of the blood tests and told them I would reschedule when I got back home. It's pretty easy to get an appointment there. After I cancelled the appointment, that's when the doctor called me with the results and told me that's all they could do for me - but that I needed more blood tests. I've tried to make appointments in a couple of different towns to get the additional blood tests that I need. No one could help me. It looks like next time I get home, I'll have to take some time off for doctor's appointments. I just don't know when that will be...

The rheumatologist in my hometown can't get me in until mid April. I have a relative that's a nurse at a doctors' office and she told me if I can give her a couple of days notice, she should be able to get me an appointment with one of the internists that she works with. I just need to know and hopefully sooner rather than later! I've been having medical problems for years and it'll finally be a relief to know what's wrong with me (if I do have Lupus).

I have a question - how often does a person with Lupus have to go to the doctor? Do they have to do blood tests often to monitor medications? Will I have to cut down on my traveling because of the difficulty in making appointments?

PainfulGirl61
01-25-2013, 09:49 PM
Thanks rob and tgal!

Believe me, I understand the problems with spammers on message boards. It can almost be a full time job just trying to keep them away!

debbie-b
01-26-2013, 08:38 AM
Hi PG61,

Welcome to WHL.
You are in a very difficult situation, with the traveling. You will have to take some time off though, to get this figured out and if it is Lupus, it needs to be treated.
I hope you can get an answer soon.

Debbie

ItsLupus2007
01-26-2013, 01:17 PM
Unfortunately no one will be able to answer how often you will have to be monitored or how often the Dr will require you to be seen.Everyone is different and individual illness spikes,med use,dr requirements and disease activity will dictate this more than any set pattern.Some people only get seen every 3 months,some 6 and some yearly.Labs done every so often if you are on certain meds.Most will set follow up appts after first visit and then you call if you have issue.

Leaniebean
02-11-2013, 05:32 PM
Hey I am new as well, but as far as waiting for your next appt and test it is a mental stress but try to stay relaxed. It may sound oxy moron but in drs office it's as if they don't see it being an emergency. I had my Ana panel, it was positive with 1:640. I went to a Rheumy who ran addtl test I called a week later for the results and the lady was like Oh the test on your liver was low but that's normal.. Well a month later I found out it was low and it's only normal in Lupus..... It's like they tend to mishandle you UNLESS the possible disease is messing with an organ.... Go figure!

Angieallen
02-11-2013, 08:40 PM
I'm a newby as well. My appt is next week. I've been sick for a while,but the past month I have been going down hill fast! I hope you get the answers you need.

BonusMom
02-11-2013, 10:06 PM
Welcome to all the newbies!

Sadly, we all have a common bond in that we have SLE (of varying degrees), but this is the BEST support group you'll find!