We have just been through one very frightening time with my wife, Barb.
She was hospitalized for two weeks with severe anemia.

She went through a battery of tests, blood work, CT scans, MRI's, the whole nine yards. She was so anemic, a cancer Dr. was called in!

She received what our doctor calls a major tune-up. She received a blood transfusion, and had a pick line put directly into an artery to receive strong nutrition. She is better, but still coming back, and weak.

There is no diagnosis to this! Some thought it leaned toward lupus. Another thought it might be Sjorgen's Disease. It depleted her protein, calcium, and vital minerals. She tested off the scale for lupus, but yet, they don't think it is that. ( I'm so tired, I know "Sjorgen's" is not right--but it's as close as I can come!)

Our g.p. is referring her to another r.a. Dr. for a second opinion. Meanwhile, there is no clear cut name for what r.a. problem caused this. She did go in to the e.r., as she has many times, with severe back pain. This time she was so bad, our Dr. kept her in for two weeks.

It's truly the worst valley we have been through in 8 years of marriage. They first saw a shadow on a lung, then she did have the swelling in a neck lymph node with tenderness!! Thank God, all turned out okay, and nothing was found wrong there. If we should ever learn what this is, that caused all of this, we will let you know.

Pardon me while I bump this one up. I doubt anyone else has been through what my wife has/is going through, but I wanted to keep this one floating near the top in case someone has. The disease I grossly misspelled up there was 'Sjogren's'.:D

Hi,
I could be way off, but have you ever heard of Celiac disease? It is an autoimmune disorder that causes damage to the small intestine so that nutrients can't be absorbed. Anemia, extreme weakness, low calcium and osteoporosis, malnutrition and joint pain are common symptoms. There are many others! Someone with Celiac does NOT always have digestive symptoms. Doctors don't usually look for it unless you have the classic symptoms. I was diagnosed 6 months ago, but only because my husband read about it in the Reader's Digest- "The 10 Diseases Doctors Miss." Some Celiac's aren't diagnosed until they are in the hospital under circumstances similar to your wife's. If you would like more info you can [ removed ].
I hope your wife feels better soon.
Kathy

Hello, Kathy, and thanks so much, for getting back to us.
I sure haven't heard of that, but I nearly fell out of the chair when I read that! No Dr. has ever mentioned that word to us at all! I'm going to copy and print, if you don't mind, your reply to share with our doctor! I do have hope, though, that she doesn't have this as her blood count was good the last check. I'm hoping that she is absorbing the protein okay now.

We saw another Dr. yesterday, that our Dr. wanted us to see, for a second opinion. He has it narrowed down to either plain lupus or lupus with kidney problems. Of course, we are praying it is not the kidney type! Her feet stay swollen all the time, and water pills won't touch them!

Thanks again, so much, and I will definitely mention this to our Dr.

Sorry I didn't respond sooner, I've been on vacation. I don't have much advice to offer other than has she seen a geneticist at all? They often times are more in tune to rare diseases than even a Rhuematologist is and it may help getting some sort of diagnosis if all else seems to fail for her, especialy if it is in fact Celiac disease.

Best of luck in finding a diagnosis for her!
Barbie

Hello, Barbie-- Barb is my wife's name too! I've been remiss in keeping updates on here. The other Dr. we saw was a rheumatologist. He left it this way: He will get the results from my wife's tests when she was in the hospital, then try to make a definite diagnosis. He told us it is either plain lupus or the kind that affects the kidneys. I'm so afraid it may be the kidney one because our local Dr. told us that he kidneys were a bit slow in the hospital. He referred us to a kidney Dr., but the appointment hasn't been slated yet. They are trying to get her one closer than December, when his earliest ones are! So, apparently, our local Dr. is pretty anxious to get her seen by him.

Thanks, again, Barbie. We need all the prayers and good that we can get now.

It wouldn't be hard for the DR. to determine if it was lupus at all. Is she having lupus like symptoms?
Also is she on any medications that could cause the kidneys to be a problem such as steriods or anti-imflamatories? Have they done a true full panel kidney test, some doctors do skip out on some important parts of kidney tests.

Whatever the case may be you are a good husband for wanting to help find her answers, I commend you on this.

Don't give up and don't take "we don't know" for an answer, be assertive and find a new doctor if you need to.

I'll keep you both in my thoughts and hope you find the answers soon!
Barbie

She does have some lupus symptoms, Barbie. One, she gets chilled easily. She has been having some hair loss, but since the Dr. had her back down to 20mg. daily of prednisone, this seems to have slowed up. I forgot to say that the Dr. said her kidneys "didn't like the prednisone."

She's been on prednisone since '97, though until just a few months ago, she was only getting 5mg. of it, every other day. An oncologist told her in the hospital, that her blood tested way off the high end of the scale for lupus, but which type, we are waiting for the r.a. Dr. to figure out. After her joint and connective tissue pain skyrocketed, they upped the prednisone to give her some relief.

This new Dr. we got in August is so thorough and caring, that we would be insane to leave him! Believe me, the one we had before him was a blank idiot! The old one ran blood tests and couldn't see anything wrong at all! But then, he was only an O.D., not an M.D. like our present one. What also prompted our new Dr. to hospitalize her was the fact that her rt. lymph node in her neck was tender and swollen. That scared him and us too! They first thought they had found a shadow on her left lung, then they were concerned about the lymph node. Intense prayer worked by later revealing that there was NO shadow on the lung, and the neck node was termed normal by a head and neck surgeon! It all turned out far better than it could have, but of course, we are waiting on the diagnosis from the r.a. Overall, she does pretty well now, some back pain now and then, but nothing like when she was protein-depleted. Thanks again-

It sounds as though, from your description then, that you are all pretty sure it is in fact Lupus but an issue of what type overall. It seems as if you are looking for some moral support and answers which is understandable. The more you know the better off you are in the long run. A well educated patient is often a well treated patient.
It is fortunate that you do have a good doctor caring for you

Steriods are bad overall on a long term basis, my kidneys don't like them either and I end up with bleeds if on them for more than a few weeks. It is quite dangerous.

I really wish I could be of more support but honestly I'm not real familiar with Lupus. I do know what it can do to a person and some of the basic treatments. I know it can be life altering for some individuals. There are some good folks here who do have it that are more in tuned with it than I am and can probably give you some good advice.

One thing I would suggest, and please take no offense, but I do suggest that if she does in fact have lupus she and you find a good support group in your area as well as find a good pscyhologist who can help you learn how to not only cope with the situation but help your wife learn some non evasive things in dealing with the pain.

These types of methods are often first steps towards pain management if she would ever need it.

What I am trying to say overall is that neither she or you are alone and there are so many folks out there who are going through the same thing that a strong network is going to be most benificial outside of medications and various modalities in helping you all day by day.

Again, your wife is lucky, you are a good man. Not all men would take the time to really try to understand what is going on with their wive's health let alone try to seek answers.

Take care!
Barbie
(btw talk about irony, my son's name is Tony :) )

Thanks, Barbie--If it really is lupus, we will definitely look into the options you mentioned.

I do love her, that's for sure. For two weeks, I cried until I thought my heart would break, and prayed. I was so scared she had lymphoma or some form of cancer. She had all the indications in her bloodwork. Lupus doesn't sound as bad as compared to what it could have been. She is my world, my life, my all. I can't spit it out any plainer. We married only 8 years ago. Neither of us had ever married before. She is 60 and I am 57. So, I know this was the special person God had planned for me.

Anyway, I do thank you for all the suggestions and advice, Barbie. They are so much appreciated. Tell your Tony hello from this one!:)

Dear Anxiety Man ? Tony,

All I can offer is what I've been thru with my mom..she is 73 and has severe RA, she is as crippled as one can be with it. She got very anemic years back (can't remember when exactly..guess mid 80's) and she couldn't hardly go...she had to start taking B-12 shots, every week, then now every month. Lupus is I think I'm right on this in the autoimmune category as is RA. One of her nephews has it, her younger brother has RA, along with now lung cancer from smoking...and they had an Aunt I didn't know that had RA bad....see we were always wondering how they got it cause she couldn't remember any family that had it..(she didn't know, I only found out when I started doing family tree stuff) anyway...what I wanted to say was..her heart is enlarged from the RA and she got a I guess cross syndrome like that SRojens (sp?) that is called Felty's Syndrome....her spleen started enlarging...I don't know how long it went on....but it ate up her good blood cells...I think the red ones..but maybe the white....you'll have to look up the function of the spleen as I forget (had alot going on) anyway it got to the size of a full term pregnancy!! No kidding....they had to remove it....she tolerated the surgery fine, but had her intestines to develope a scar tissue quickly that had to be reoperated on to unbind them. I think this was when she was 69 or 70 years old....I've had alot with her..and my husband being hurt at work severely and almost dying last year from an aneurysm....
but the reason why I'm telling you this is that RA can bring alot of other weird stuff with it...they also thought she might had cancer then cause she was so low in something in her blood that the spleen just held onto and caused it to enlarge...she endured 2 bone marrow tests, cause they were afraid of cancer. I'd never heard of this Feltys thing...no one usually does til they have to deal with it...but just for your info...incase they maybe looking for answers.....

God Bless...hope she gets well and you take care of yourself too...let me know if I can help anymore....:)

Tony -
My husband and I have the same type of relationship you and your wife does. My husband, John, is an advocate many times for me when I can't do it on my own. I know he is very concerned about me when things happen or even when medications change and he's always trying to help when he can.
I think it is very important to have such a relationship during trying times such as medical illness or chronic pain.
Many spouses or significant others can't understand what the other is going through and sometimes they do get upset because they feel "it's getting old". I am very sure she appreciates you.

Now that you mentioned her age I can say she is the "right" age to be diagnosed with Lupus. It is very common that most folks will go through life w/o a problem and then when they get older, nearing or at their 60's it appears more cases are diagnosed.
I saw this happen to an incredibly wonderful coworker I had many a years ago, she was just over 60. Back then there wasn't much to do for her and she got ill very rapidly.

Since then there are new medications and treatments out so there is much more success so don't fear the worst! Understand the worst case scenario but always hope and pray for the best.

Boaz is right, arthritis of any form can bring a lot of secondary conditions with it such as Fibromyalgia for example or side effects from medications can also bring on new conditions.

While Lupus and RA are generally inherited they have been known to skip many generations or family mates have such a mild form it goes undetected, it's possible this too could of been the case of your wife.

At any rate I'll stop babbling here and bid you goodnight!
Barbie

Hello, Boaz & Barbie-- Thanks for some very interesting info. I will Google up Felty's and see what it says. It sounds like your mom had a similiar "carnival ride" as my wife did--lots of stuff pointing toward some kind of cancer activity going on, low blood counts, all things that can scare you out of your sanity, about them. Your mom's spleen problem is what scares me about lupus, if my wife does prove to have it. I worry about all of her vital organs now. Her kidneys are definitely slow, according to what the Dr. told us the other day. They are referring her to a kidney Dr. also.

I am glad to know there are better things out there to treat this, Barbie. That's good. I think the r.a. and lupus did skip some generations with my Barb. Neither of her parents had it, that they knew of. Her dad died of congestive heart failure, and her mom of multiple mylanoma (bone cancer). That's the one that scared and haunted me in the beginnings of Barb's hospital stay! She was having all symptoms of some type of cancer. That is why we know we were being blessed with a prayed-for miracle, by her NOT having any of that. One ray of hope I cling to is what I read in one of our medical books. It says that sometimes, for unknown reasons, lupus can just go away on it's own. That one, I'm praying for!

Again, thanks to both of you for helping me stay encouraged. God bless you gals and we'll see ya'll later.

Hi Anxiety Man,

I have been reading your posts and appreciate you keeping everyone updated. I hope that you are handling things well, it seems as though you are (as well as can be expected that is). I really like that you are taking so much time into researching and find out everything that you can. I do hope that they help your wife, get her on the right path of recovery, and that she begins to heal.

My thoughts are with you two. Just so you know I have been diagnosed with RA and as far as we know no one has had RA in both sides of the family. Maybe many many generations ago but it seems to be quite a mystery for us. I have cancer and osteoarthritis in my family history but for the most part (thankfully) most of my members alive and passed on have been quite healthy!
Take care.

Hello, thescaredest (Almost like Anxiety Man!):D It's good to read you today.

I do my bestest to keep folks on top of what is going on with us. I'm getting more responses, and very caring and nice ones here than on the lupus board. That's super with me! I so much appreciate everyone taking an interest in us and showing so much caring. That means the world.

That really is something having the r.a. with no history of that. I am very glad that your family has enjoyed great health. That is something that is so easy to take for granted until something comes along to knock our props out. It sure has brought me around, regarding my Barb!

Thanks for talking to us, thescaredest, and just come on in any time.

God Bless,