[kathyc]

My blood tests are showing I have Lupus and my GP has referred me to the one and only Rheumie in Frederick, MD that treats Lupus. Unfortunately she cannot see me until May 29 and my med insurance expires May 26th (my husband got laid off two weeks ago). I am looking for references and referrals to Lupus doctors in my area. I am willing to travel 40 minutes or so. Gaithersburg, Rockville, Bethesda, Hagerstown, Mt Airy, Ellicott City, Columbia, York PA, Leesburg VA, etc.

I thought it would be an easy task, like there would be a list of Lupus doctors on the web for my area. What I'm finding are lists of Rheumatologists that don't necessarily diagnois nor treat Lupus. And I don't understand why folks on this message board cannot give out the names of their doctors. Did I miss something in the terms and conditions I agreed to for joining this site?

Anywho, any suggestions would be appreciated. I don't even know what kind of Lupus I have yet. From what I've read on the NET it sounds like many of the symptoms can be attributed to other conditions. It sounds like it's going to be difficult to diagnois - is this true or can the doctors do it pretty quickly?

Thanks all and I look forward to being a part of this message board.

Kathy

 

[Clare.T]

Welcome to the forum Kathy
I am sorry about your situation needing to find a doctor sooner, and of course being unwell. We certainly may give out names of doctors and we often do - see the Find a Doctor section. It isn't permitted to bad mouth a doctor by name (or anybody else for that matter ) The forum PM system can be used for adverse comments.

Lupus can be hard to diagnose because many cases are complicated and not typical but some cases are clear cut. It is worthwhile trying to get an experienced expert because not all rheumatologists know much about lupus or they think they do, but have mistaken notions.

If blood work is showing abnormalities then the chances are that if it is lupus then it will be systemic lupus that is not confined to the skin, but that term SLE can mean anything from mainly arthritis to very serious disease, for example if it is affecting the kidneys or nervous system.

I suggest you ask for copies of blood tests so that you can learn what they are for and what they might mean. That will empower you. I suggest not reading too much at this point as usually the worst case scenarios and most challenging cases are described and it is easy to forget how many people live just fine with their lupus well controlled. They don't write on forums because they have no particular problems. if your current doctor is able to do the more specialised test that could give you a head start. Usually the only test GPs do is the one called ANA which is not specific to lupus except at certain levels. Symptoms and health history are just as important

There is also a lot of inaccurate information out there. Sites like this one and the LFA site www.lupus.org are the best. Your local LFA chapters often have the names of specialist doctors and if you explain the insurance situation you might be able to get in sooner

There is a vast wealth of experienced information here about all aspects of lupus. We can help you to better understandings so with a bit of luck you can access the best possible treatment for yourself

Let us know how we can help you

Bye for now
Clare

 

[lazylegs]

Hi Kathy,

Welcome to the site.

I came across an article that might help in your situation. It has the government website to go to for further information about getting help to pay for Cobra insurance once your benefits are discontinued. It always gives a short explanation about the stimulus package designed just for people like you.

http://www.washingtonpost.com/wp-dyn/content/article/2009/03/04/AR2009030403894.html

Try posting in the "Find a Doctor" section. Hopefully someone in your area will see it and be able to offer a suggestion.

Take care,
Lazylegs

 

[Maia]

Definitely look into the govt paying a high percentage of your health insurance premiums if you can.... and you can do a search through the Find A Doctor forum or make your own post there. People can publicly recommend a doctor on the forum, and you can request for people to PM you if they have any physicians they want to warn you about...

My last suggestion is to call the doctor office and ask to be on the cancellation list after explaining you'll be losing your health insurance before the scheduled appointment date. They may be able to move you up earlier after you explain the situation.

If possible, you may want to actually make sure you *don't* get an SLE diagnosis as you will immediately be uninsurable in the private USA insurance market. Discuss this with whatever doctor you do manage to see... a UCTD diagnosis will still get you the same treatment but without the insurance hassle.

Good luck and take care!

 

[onetay]

Kathy,
I am in Illinois so I can't help very much. Try getting some names of doctors and then google them to find out about them. You can do a search for doctors in the areas that you want and then google the names you get is another way to do this. I know that it is not much help but at least it would be a start. I wish you all the luck. There is also an area on here to post to find a doctor in your area, you could try posting it there also. I do hope that you are feeling well and doing well.

 

[KarolH]

Hi Kathy,

I am in New Jersey, probably 2 hours from you just south of Philadelphia.

I think given your situation you should call your GP and have them make a phone call to a Rheumy doctor to get you in sooner. This always seems to work.

I am sorry your hubby was laid off. It is scary what is happening to this economy and how it is effecting people like you. I hope you make out ok moving ahead and good luck.:wink2::wink2::wink2: