[momof3boys]

Hello there,
First of all I would like to say hello to all, and I feel for all of you with the pain you have been experiencing. I have not been diagnosed with Lupus, but feel I have all the symptoms, and can't seem to find it in me to ask any of the 8 doctors I have been seeing over the last 3 years if that is what it could be...I just figured they would know if thats what it is. I have experienced vertigo and clumsiness for the past 5 years, have had heart issues since 2005, last year the nerve in my leg had 3 bad attacks, the one in June I couldn't walk, or urinate; was numbed with epidurals, and in Oct 08, it happened again, 911 was called- I couldn't walk, the pain was excruciating, and I couldn't urinate. I was told that week I needed a microdiscectomy- when they went in the bone fragments were actually embedded in my nerve (the surgeon told me I have dry bones). Since then I have told 3 of my doctors about a tumor on my low back, and on my left knee--they say its a lipoma just by feeling it? I have been diagnosed now with Melanoma on my left arm, seborrea(dry skin), and blepharospasm(dry eye), and my neurologist has tested my nerves in leg, he says they are damaged(waiting to hear the results). He also has done an eeg, for my dizziness, constant twitching on left side, and the memory loss I have been experiencing. My surgery for the melanoma was put off because they now are running tests on my heart due to abnormal ekg, at City of Hope. I am only 43, and this is becoming so disheartening ( no pun attended, as I want to just cry). Has anyone else experienced symptoms like this, and was to find out it was Lupus? Thank you for listening, its been hard to stay strong, even when I have many friends who pray for me.

 

[Katharine]

Hello and :welcome:

I have moved your post to start a thread of your own. In someone else's thread it would get lost and you wouldn't receive enough replies.

I'm sorry to here that you have been having so many health difficulties. It sounds scary and very unpleasant

Lupus is a very complex disease as I'm sure you know and some of your symptoms could be from that or another auto-immune disease. However, some are also rarer. Is there a specific reason why you are leaning towards lupus? Has it been suggested before? Do you have family members affected by it?

It might be worth taking a look at the link below for the ACR classification criteria for lupus and see if you have more things which fit in there.

http://www.thelupussite.com/forum/showthread.php?t=33123

Don't hesitate to ask any questions you may have, we'll be happy to help as much as we can

Katharine

 

[momof3boys]

Thank you Katharine,
I have been having so many different symptoms for so long, including the cold feet and hands (Reynauds ?), and my mom had mentioned it before. Her friend had similar symptoms, and after 3 years, they finally diagnosed her with Lupus. It wasn't until recently when pieces were coming together so quickly, like the dry bone, dry skin(rash around face and scalp), dry eye, the increase in memory loss (which we joked about for awhile, but is becoming serious), the bone and joint pain I am having; which has made me wonder more if it is Lupus. Along with these symptoms, I seem to get tired by late afternoon, which wasn't normal for me, as I have always been so active. What are the blood tests that they can take to determine? or skin tests?
Thanks again,

 

[Katharine]

Hello again,

Generally the first blood test run is a type of screening test called ANA. If it is positive in higher titres it can be indicative of lupus. ANA is however more of a screening test and is not lupus specific. There are then other more specific tests that are generally requested by a rheumatologist.

By the sound of it, it may well be worth asking for a referral to a rheumy (even if the ANA is negative). Try to make sure you get in to a rheumy with experience in auto-immune diseases. Not all of them are specialised.

I would go into such an appointment being pretty honest about it and saying that you don't know what is going on but something definitely is. I wouldn't specifically ask if they think it is lupus (that doesn't usually go down too well) but maybe ask if they think something auto-immune might be going on.

Sometimes skin biopsies are performed by a dermatologist if there are rashes and also, sometimes, in the absence of positive bloods when looking for answers - though rashes would also have to be present (Some people's ANA only becomes positive later and in a few cases - only between about 2 and 5% - it never becomes positive).

Unfortunately there is no definitive diagnostic test for lupus. Diagnosis is a combination of clinical symptoms and lab results. Lupus is just so varied and complex. It can be very hard to diagnose and can present quite differently in different people.

When you say dry bones, do you mean brittle? I'm not sure if there is a link to lupus there (above my head to be honest) but maybe someone else can answer that one.

Hope that helps a little,
Katharine

 

[x_claire_x]

Hiya, if you are leaning in that direction maybe you could ask your Doctor to do some auto immune antibody tests and appropriate blood tests, though it often takes more than that for diagnosis, but it could be a start. He could refer you to a rheumatologist, preferably one that is knowledgeable about auto immune conditions. It certainly wouldn't hurt to start doing some checks. You seem to have been dealing with alot, it would be good if you start writing a 'journal' of symptoms so that you have it written down for the Dr to read, it can be quite eye opening when you start doing this. Think you need to feel a bit more proactive but tread gently, Drs hate not thinking of things first!!!!!!!
Claire X

 

[onetay]

momof3boys,
Hi I am Tammy and I am 42 well this weekend I will be. It is hard to be sick and have a family to take care of and not know what it is called. If it were me I would be telling all of them that you want lupus looked at, you stand a better chance that one will listen to you. Some of the things you describe above I have everyday and others I have had and it has been awhile. I did want to say that sometimes we don't have enough faith in our doctors or in ourselves to do the right thing. I have found first hand that sometimes it takes a team to get a favorable outcome to a problem. Often times our trust in our doctors are cut short because they don't seem to have enough time to truely examine what is going on. You have to give them a chance to find out what is going on. You can ask them to please check for the lupus to rule it out then continue if that is not what is going on because something is going on. I do hope you start feeling better soon.

 

[Pink Pearl]

Hi, and welcome to the board.
As Katharine said, questions are the way we all learn...so ask away!

Some of the blood work you need is for "ANA" [anti nuclear antibody], anti ds dna [more specific than the ana this tests the dna in your cells to see if you have antibodies against it], (remember dna comes in double stranded, dioxiribonucleic acid or single stranded/aka ribonucleic acid) apla [anti phospholipid antibody], acl [anticardiolipin antibody], esr [erythrocyte sedimentation rate], crp [c-reactive protein], and then a standard panel included in the CBC [complete blood count]. There may be more that you are tested for, but these are the basic standards. [The organic chemistry class I took has come in handy, plus other science classes]

Some doctors are afraid to use the "L" word for fear of upsetting you, symptoms are not as set as they feel needed, or who knows? But, if you are concerned, then you need to ask the doctor to have yourself tested.

This said, many doctors put all their eggs in the basket of ANA. There are a small % of us who are ana negative, have always been, and have never had a positive ana. SO, if this is all that you are tested for, ask for more. I fall into this minority and have never had a positive ana and been diagnosed with lupus for 20 years. Because my doctors relied only on ana, I was medically mismanaged for decades.

The sooner you are tested, diagnosed, and treated, the less chance you run of having major organ involvement. So, my dear, ask away! To heck if the docs don't want to look there, you need answers.
Sally

 

[momof3boys]

Thank you for all the wonderful advice! I just got home from my neurosurgeons office, and I had mentioned it to him. He saide he never tested me for Lupus, but there is the possiblity knowing all the symptoms I am having, and have been diagnosed with. I do have chronic radiculopathy, which probably occured prior to my surgery. So, I will be asking either my neurologist for a referral to a rheumatologist, or will ask my surgeon who is taking care of my melanoma. Thanks again for all the warm responses.

 

[KarolH]

Hi there and welcome to the board.

I give you credit with 3 boys..........you deserve the mom of the year award.

I have 1 and done.:lol::lol::lol:

I was not brave enough to do it twice.

I hope to get to know you better and keep us posted as to how you make out moving forward.