Husband diagnosed yesterday

[nikuce]

Yesterday my husband, age 42 was diagnosed with Lupus..he had a positive ANA test and hyas had symptoms for YEARs, he has carditis, arthritis (two knee surgeries), and hasn't really been well at all for the apst year. Any good advice on references, books, websites,etc? I already bought The lupus Book and started reading, we have three small children and I am kind of overwhelmed right now...Thanls for the help! :rolleyes:

[AnM]

Nikuce, Hey & Welcome to the site!

I am sorry your hubby has been dxed. (diagnosed) w/ Lupus, but glad he has (& u) an answer to all this, n can now get appropriate treatment & start to feel better!

The Lupus Book, is a Great book to read, that is 1 that we'd all prob. reccommend. As far as a site- for support this 1, & for info. This 1- your at the right site- :D IMO, this is the best site for Lupus, info. support, n all. You can go to the front of this site- where there is lots of info. Up to date n all!! That's very important that u don't read anything old- basically over 5 years old. & facts of course.

But, another site where u can get good info. is the Lupus Foundation, here's the link Lupus.org (http://www.Lupus.org)

Oh, n to go to the front of this site- just click on The Lupus Site- under the Butterfly, top left of page.

Many people can live "Normal" lives- or close to normal- w/ Lupus. Is he seeing e rheumy?
& What meds. is he on now- have they started him on?
Also, wondering where u live?,- as that can assist us in knowing things- as we all live all over the world.

Take care, n keep posting. this site is really great for the support n understanding!! & there are some men also that post on here- so maybe your hubby would like to talk w/ them some also.

Take care, again,
Alicia :coffee: :flowers:

[nikuce]

He has an appoitment with the Rheume on the 27th and he has a cranial MRI schedualed for Thursday becasue of his recent flare up with dizziness, blackouts and memory loss...hopefully that helps...I saw there was a mens area, when he is more comfortabloe I will have him post.

[rwb200]

Hello Nikuce
For information one of the best sources I have found besides the Lupus book is at NIAMS.
NIAMS is Gov. funded if you are in the US you can request some teaching material that is available for Medical Professionals.

You can request this information free of charge and it has a very upto date information in it that will cover areas that you do not find in any other source.

Another great source of information are those who have dealt with this for years, this site and many local programs can help with this. It is also your best source of compasion and understanding for both you and your husband.
You will both have many questions for years and we are all here to answer as best we can or to just liston if you need that.

[raggedyann1]

Nikuce,

Hello and welcome to the Lupus Site. :hello:

You have been given excellent suggestions so far. You might also check with the lupus foundation http://www.lupus.org/ and the lupus alliance http://www.lupusalliance.org/

You can find local support groups thru those 2 sites. Depends where you live as to which of those sites has support groups in your area.

When I first came out of remission, I just googled lupus; read all kinds of information and visited several lupus sites. What I found here is not only good support but a very active message board and the main page has the information in layperson language instead of medical terminology.

It is going to take time for both you and your husband to accept this lupus diagnosis, so don't rush for all the answers.

The mri can help with dxing CNS lupus and/or APS syndrome. Both of which can cause black outs, memory loss, etc. Most people with lupus have, to one level or another, cns issues at some point in their life. Most of the time high doses of prednisone can take care of it.

Next my "lecture" to newbies.
Most people with lupus live a normal lifespan
Most people with lupus live fairly normal lives.
What you read here or on any lupus site is not a good spectrum of lupus patients
People here fall into 1 of 3 categories with a few exceptions.
1. Not yet diagnosed but may have lupus
2. Newly diagnosed and want to figure out what is going on.
3. The sickest of lupus patients, which mean we for the most part do not work and are on SSDI or = disability program in their country.

Hang in there and let us know how you are doing.

Take care,
Karen