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View Full Version : They think it may be autoimmune, most likely lupus. but..



justdave
11-03-2008, 04:14 PM
This is what my lung doctor and Disease specialist thinks and have refered me to a rhuematologist. Lupus?

What I do know..

I have a positive ANA
I have nodules in my lungs
I have enlarged lymphnodes in chest
I have a rash on my leg that tested positive for vasculitis on biopsy
Head MRI came out normal
Heart is strong and is not the problem (tested 9 ways to sunday. Why do they always think it's the heart.)


Symptoms ( too many )

tremors when moving hands
tingling, buzzing and numbness in hands and feet
Blue feet when cold (im serious)
get sick in direct sunligh
Losing my eyesight (blurry)
Losing my hearing (highs)
Speach issues
Always tired
Low grade fevers every night
Random joint pain
Gastritis (seen endoscopy)
Shortness of breath
Hurts to take in a deep breath
Twitches and sore muscles
chest pain
seem to be losing weight
random circle rashes that bruise on legs
Painful sudden headaches
All Symptoms come and go and flair for months and then
poof all gone.

Each flair is worst than the last, this time eyesight and breathing
was impacted greatly.

But... I have no butterfly rash on my nose or cheeks, i heard that is the tell tale sign that everone gets so maybe it's not...

Also this whole mess started when I was 23, (twenty years ago) when I had the worst case of mono that my doc had seen. I was down for three months and it kicked the snot out of me. The last symptom I got was random joint pain in the toes and fingers and wrist and occasionally kneess. This never went away and flairs up time and time again.


been to more doctors than you can count, this is the first time though they have thought autoimmune. Usually the take each symptom and treat it seperatly. (I think they think I am nuts, half the time it seems so. How can you have that many things wrong with you.)

So now I await the next doctor, the lungs were so bad that I am out of work because going out makes my breathing painful. It's been two months, (takes forever to see these guys) They did put me on Prednisone, all symptoms have responded well and as of this morning my breathing is almost normal. fevers are now gone.

I am playing with going back to work in the mean time because I am feeling stronger, but my wife is pleading that I stay safe until I talk with him. I feel guilty, just resting all the time.

So I thought I would come on here, and see if you think half or more of the symptoms could be lupus related. Is there a given lupus blood test that never misses and easy to do? If the test says you have it, you have it, and if not there is no way you can have it.


I, like many i am sure in diagnosis hell, I just seem to wait and wait.

I used a douneb to keep breathing twice a day and Prednisone in the morning. This have proven to put whatever it is into remission.

I fear the next flair may stop my breathing, or the head pain may cause a stroke or something...

Can you die from lupus? or is it more like getting arthritis..

Confused, fustrated... thoughts? Dave..

KathyW1958
11-03-2008, 05:43 PM
Hi Dave,
I just read your post here and it definitely does sound like you have Lupus. You do not always have to have the Malar rash to have Lupus. Rob, one of the moderators in here has Lupus and he has never had the malar rash. I did not have the malar rash for years and then poof it hit me after a very bad bout with the Chickenpox at the age of 35. My health went right down hill fast real fast. I like you had symptoms for years and years. It is rarer for men to have Lupus, but there are men that have Lupus and it sounds definitely like you have Lupus. There is not just one lab test that indicates that you have Lupus, but a combination of blood tests and symptoms. They go by a list of Criteria along with lab results and you have to meet at least 4 of the criteria listed by the Lupus foundation and it sounds like you more then meet the amount of criteria. The fact that the Prednisone has made you feel so much better so quickly also could indicate that you have Lupus. I hope that you get some definitive answers from the Rheumatologist.

There are instances where folks do die from Lupus, but that is not the norm. Lupus is a chronic illness that there is no cure for, but in most cases it can be treated fairly well with medications and you can live a normal life span. You will have to alter your life and you will learn how to do that and what your limitations are. The worst thing for Lupus is stress big time. Try to remain as stress free as possible and I know that is very hard to do sometimes. I hope that you get some answers from the Rheumatologist and please do keep posting. There are a lot of good folks that come in here and they have some really good information.

Hugs,
Kathy

NoodleMom
11-04-2008, 07:09 AM
Dave, Im sorry that you are having to deal with this also. I was diagnosed a year ago and then re-diagnosed a month ago. I have tons of muscle and joint pain as my primary symptom. All the others came into play after my initial diagnosis. I do not have a butterfly rash that is very pronounced. However I have sun sensitivity and cannot go to Walmart without mt SPF 50 shirt and my wide brimmed hat to keep the fluorescent lights at bay.
Lupus is tricky in that it is a mimicer and symptoms are different for every lupus patient.

K

KathyW1958
11-04-2008, 02:55 PM
Hi Dave,
When do you go to see the Rheumatologist? When you go try to take all of your lab tests with you and write down all of your symptoms that you can think and when it all started. I think that it will help the Rheumatologist when you talk to him. I think you should have a copy of all of your medical records if you can so that he can look them over too. I just thought that I would post this to you. Please post and let us all know how it goes with the Rheumatologist ok.

Hugs,
Kathy

justdave
11-06-2008, 08:22 PM
Thank you for the advice..

I wonder when you say write your symptoms down, do you mean the ones that make the most sense or every little thing.

I mean, people are telling me my eyebrows are thinning, that sounds very wierd.

There are all these small things that don't make sense, like I have a sore tooth, but just for two days and then gone. How do you tell your doctor you have traveling tooth pain.

My eyes get blurry, but they don't stay like that, sometimes they are good and sometimes not.

My symptoms don't seem to stay around long. With the exception of the lung problems of course and tremmors, that seems to be a constant.

Though it has all gotten better since the predisone, it isn't gone but there is some serious improvement. I have dipped a bit though since I went from 40 to 20. But I can live with it.

I am assuming they are going to wean me off soon, I wonder how I am going to do.

I am out of work fpr twp months because of the lung issues, I can't stay that way forever, i want to get better, I hate being a burden on my family, they need me.

I am resting, and doing everything I am supposed to do but my illness is taking it's time getting better. If it wasn't for the pred I would be sunk,.

KathyW1958
11-07-2008, 05:38 AM
Hi Dave,
Write every single symptom that you can think of down, even if they seem strange to you. Write about every single illness you have had all through your life. I did this when I went to the Rheumatologist for the first time and he traced my lupus all the way back to very early childhood. You see you may forget some things and if it is written down then you have the information for the doctor. Take all of your lab results with you also. Lupus can affect any part of the body including the eyebrows. Please keep posting and let us know what the doctor says ok.

God Bless,
Hugs,
Kathy

rob
11-07-2008, 08:48 AM
Hello Dave,

I'm Rob, and I was diagnosed with SLE five years ago. Sounds like some of our members have given you some excellent info and advice. As far as your symptoms, I have, or at one point or another have had almost all the symptoms you mentioned. But there's one I've never had-the malar (butterfly) rash on the face. I get a rash on my ankles, sometimes upper arms, but never on my face. Absence of the butterfly rash does not rule out Lupus at all. I wish it did, because if that were the case, I wouldn't have this disease, but I do. I'm coming off a very long day and night, and I'm a bit foggy in the head, so it's time for me to get some rest. I hope to talk to you later. Hang in there the best way you can.

Rob

YPT
11-08-2008, 07:44 AM
Hi. It's YPT. Let me just say that I am glad that this forum is here because things that are happening to us would otherwise make us think we are absolutely crazy. Please take the advice of writing down EVERYTHING that bothers you. I kind of felt stupid when I was told to do that because I thought the doctor should know. However, I have come to learn that Lupus is a very hard disease to diagnose.
My "malar scar" started out as a very small spot on the bridge of my nose. As the summer wore on, the spot became larger. A primary care physician I knew had told me to go to the doctor to see if it was cancer, and to my surprise and delight and fear, I did not have cancer, but I was diagnosed with Discoid Lupus. That was in 2001. I have just been recently diagnosed with Systemic Lupus. The scar on the bridge of my nose has grown and I am now getting the scar on my left cheek. Along with the other symptoms I am experiencing are new sharp pains in my legs. Those pains are very extreme and I get scared when they hit because my legs feel as if they are going to give out.
Feel Better.
YPT

justdave
11-10-2008, 05:07 PM
Had the Rhuematologist today, things seemed to go forward for once but he wasn't ready to commit to a diagnosis. He did tell me I had Vasculitis and it was autoimmune but which was the question. He told me to keep myself open but lupus is the closest match so far.

He had me do a bunch of new blood test to check for cerain antibodies besides ANA that would help isolate itl.


He said the good news is most of them are treated the exact same way, he left me on the prednisone but added a new med.

Methotrexate Ten tables once a week.

He told me it would help repress the bad autoimmune without totaling the good. He said it was a better med than Prednisone is more like a blanket but the problem is still there.

He told me it takes a while to work, so I have to keep on the Pred for a bit. but if it works as he hopes he would slowly wean me off the steriod.

I will know what the tests revealed in a month UNHHHH Hate waiting.

I know knowing isn't everything, as long as you have treatment, but It is important, at least to me.

KathyW1958
11-10-2008, 05:48 PM
Hi Dave,
I am glad the visit with the Rheumatologist went pretty well for you. I know you want a difinitive answer. Sometimes it takes a while before the doctor will diagnose Lupus. They just want to be very sure, because this is a very serious illness. Hopefully these lab results that you will be having done will nail it down. I hope that the Methatrexate helps you. Please keep us posted.

Hugs,
Kathy