New member, this site is great, thank you

[DAVEBLDR]

HI everyone ; my name is Dave been diag, and then told "no you havn't got lupus".very confused. 3 pos ana's ,3 biops pos, odd blood work. 2 back surg for disc's ,7 surg for spinal cord stimulators problems.I have a bicuspid aortic valve with moderate to severe regurg. Along with aortic anurisum[sp?] moderate but stable. So each time i try to explain my smytoms the doc's believe it's from the back or heart. I was just put on lycria and keppera with avinza,norco, tramadol and cymbalta. All from pain management and toprol from heart doc. Seems things are geting out of contol. Pain is bad ,fatigue is unbelieveable, muscles are sore all over,and i can just touch my arms very light in several diff spot and it's so sore it's hard to explain. Last week was outside helping my son build his house then was in bed for 2 days. Just started feeling better. does this sound like anybody out there. Help if you can please!!!! Thank you for your help.

[cath]

Hi Dave,

Welcome to the forum!

Sorry to hear about all your problems.

Are you still under a rheumatologist? I am suprised that you have been undiagnosed with a positive biopsy result. Normally that would be a clincher for a diagnosis.

Where was the biopsy from?
What are your other symptoms?
What were the 'odd' blood results?

I suspect you need to see a different rheumatologist - one who is willing to take your symptoms and test results seriously.

Hope you enjoy it here,

X C X

[DAVEBLDR]

one was on my elbow, one on a odd looking red mole like object on my rightside, the last was just below my ribs on the leftside when removing a grouth that doc's called a fatty tumor. The blood is always diff white blood cell low or just within normal same with red cells,then when i went in for tagged white blood cell test my blood would not seperate.Billi is always high,mvp is always low, mchc is high alot, ana by eia 1.8, t3 65 and they alway tell me my blood is thick and sluggish in ct tests. thank you!!!!!!

[cath]

HI,

Me again. I'd definately push to get seen by a rheumatologist. I wonder if you might have APS as well. That might be the cause of the heart valve problems, and the 'sluggish blood'does suggest some sort of clotting disorder.

SLE and APS are both serious diseases that can at their worst be fatal, and at best will make your life trying. You deserve to be treated appropriately.

From my count you meet several of the ARC criteria

ANA
Low WCC
Positive skin biopsy for lupus

plus possible
Arthritis
Sun sensitivity


You should see a specialist. Make sure they test you for APS too.
Also, you need to get your kidney function tested and urine checked for blood, protein and casts. SLE can cause kidney problems without symptoms.

Take care,

X C X

[DAVEBLDR]

hi just me trying to understand. Urine test was done-cloudy,protien pos and trace nexttime,wbc 8-12. May i ask what is APS?

[Joandublin]

Hi Dave:)

APS is Anti Phosphilipid Syndrome otherwise known as Hughes Syndrome (named after the doctor that discovered it in 1983). Its also commonly known as 'sticky blood'. It can be a primary condition in and of itself or it can be a secondary condition of Lupus.

Here is a link to web site which explains it in great detail.

http://www.hughes-syndrome.org/overview.htm

The blood tests you should be seeking are: anticardiolipin antibodies and lupus anticoagulant.

If you have any more questions, just keep posting.:)

Best of luck
Joan:rose:

[DAVEBLDR]

Hi Joan thank you for the info. Guess i'll keep trying to fine that right doc thanks again.

[Douglas]

Welcome aboard. These a great folks here. I went three decades plus before one MD checked the ANA. (Only women get lupus, right? So why would we check a man's ANA. Grrrr.) Anyway another MD told me that despite the symptoms and ANA it was not lupus (he also told me I did not have cancer; why he mentioned that I have no idea!). A third said it was undoubtedly lupus and she was apologetic that she had missed it. Conclusion: MDs are human too. All the best.
Douglas+

[Sleaps2much]

Hi Dave,

Welcome to the forum, you will get tons of help here - great place!

Take care of that anurism, did they say not to lift anything heavy? Make sure they check it often.

Plaquenil is great for the fatigue and some pain, so you need a rheumy to prescribe that, or a very good GP.

Stay out of the sun!

More replies are on their way, I'm sure, with better suggestions, just wanted to say welcome and put in my 2 cents.

Good luck

Sleaps

[Christine UK]

Hi Dave
a warm welcome:)

[iris.phillips1]

:hug: hay there dave,
my name is genette im 23 from warwick uk i have sle lupus i would just like to welcome you to this forum,:grouphug2: you will find alot of help on here and friends:rotfl:

sorry to hear you are going through a hard time at the mo, you do sound like you have lupus, you need to go and see your doc.

well hope to speak soon good luck with everything let us know how you get on

love genette xx:hug: :flower2:

[Tom]

Welcome Dave,

You sure have had many things to deal with. Even though I havn't had the same problems, I do understand how you feel.

I will tell you that fibro makes my muscles hurt like that. The more I do, the more it hurts. But things have to get done, right? My doctor gives me Vicodin for pain and it's great for me. Just taking that edge off feels great. It feels almost normal to me since most of us have a higher tolerance to pain. I think we have simply gotten used to it over time. When we say we hurt, I think our pain scale starts around 7 to a normal person. Have you seen the one that just shows faces? The one just before crying is pain pill time for me and that doesn't seem to take much these days. The one before that is probably normal to me.

Educate yourself to help you with the doctors. A good doctor will listen and find out what's going on. Symptoms are very hard to expain sometimes, so it helps to keep a list and write things down for your next visit.

Good luck and take care.

[lin]

Hi dave i just wanted to hi and welcome

i'm Linda, nice to meet you here.

[DAVEBLDR]

Hi again, Thanks everyone. Well between my wife and I we wrote down a list and it sounds like 6 peoples problems. I've read alot of your symptoms or ? and we sound so much alike. I think we still put so much trust, faith and hope in our doctors, we finally relax or get a type of adrenalin rush from the hopefull help we might get,we always feel better on appointment day. This has been the case for me so many times I couldn't count.
I've had one problem that I haven't read about however, it's when I try to sleep all my joint hurt terrible. and my bones themselves hurt deep in side. Also my arms to my elbows and my hands fall a sleep or turn numb and burn or hurt it's so hard to describe. But this only happens when i'm laying flat. Is this begining to sound like i'm going crazy or what.
Can anyone relate? Thanks alot Dave

[sadieone]

Hi Dave,
Welcome to the forum. I have lupus and fibromyalgia. I know a few men with fibromyalgia,, sore muscles all over,, mega fatigue,,especially after being in the sun or doing to much, sore spots on elbows, shoulders, knees and ankles. There is no lab test for fibro just certain points of the body that are sore to touch. For meds i take tropol xl, benazapril/hct, nexium, plaquenil, tramadol, celebrex, skelaxin, caltrate and salmon oil. The plaquenil helps with flare ups, skelaxin is a muscle relaxant for the fibro and celebrex is for arthritis in joints.
If you don't already have a rheumy, it wouldn't hurt to get one and see what they say.

Good Luck
Take care

[Mariposa]

Hi Dave,
Greetings to you and your wife and Welcome to our garden.8)

[Lily]

Hi Dave,

You certainly are going through a heck of a lot :( :grouphug2:

Have your tried the Lupus Association in your state to try and track down a good specialist? Or even posting on the boards here, there may be someone in your area who can recommend a doc who is savvy as far as these diseases go.

Am I right in thinking you are on no meds for your illnesses right now? With the right meds things are going to be a whole lot more tolerable and your disease should not knock you around so much.

I just wanted to correct something sadie said

especially after being in the sun or doing to much

I agree that Fibro could be aggrevated by doing too much but I dont agree that it should be worse after being in the sun, unless it hot outside also and fatigue kicks in. Fibro is a condition that has no autoimmune basis and it is not directly affected by the sun. Lupus certainly falls into that category though.

As far as the joint pain goes, if your joints are badly affected in Lupus with no relief then yes it is possible to experience problems like tingling and numbness from the inflammation. Another possibility there though is it is affecting your peripheral nervous system, that supplies your arms and legs. That can be a burning, very painful condition but there are meds to help and if the disease itself is under better control that problem should be minimised.

I do hope you can get some relief and more comfort in your life soon Dave!

love
Lily

[red24]

Hello Dave welcome to the web site.

My gosh you do have your share of problems. I was sorry to hear that you are having such a rough time of it. I wish you all the luck in the world.

I'm having a spinal stimulation implant this coming month. I did the temporary one already and it worked great. If you don't mind would you please share with me what happened that you have had 7 surgerys on it. Maybe I should rethink having this surgery. My spine is eaten up with Rheumatoid Arthritis and the pain and neuorapathy is awful in my legs and feet. My back hurts all the time so I would have to say my pain level is a good 5 or 6 at all times but I have grown to that amount of pain so I handle it quite well. You are the first person that has had any negative thing happen with this surgery but of course I have only talked to 5 people about it that has had it.

I also have SLE Lupus and have to say that is a challenge in itself some days.

I wish you the best Dave and do hope you keep coming back to this wonderful awesome sight.

Your new friend,
Deanna

[sheila t]

http://i11.photobucket.com/albums/a167/Sheilatush/welcome/WelcomeToTheGroupNoise.gif

Hugs Sheila in Uk

[sjay66]

Welcome Dave nice to meet you, I only wish it was under better circumstances. Sorry you have had to go through so much and I hope you feel better soon.

[DAVEBLDR]

Hi Deanna
I wish you all the luck with your SCS. It sounds like it should work well for you, I was told and have found that it works well on your legs and in some cases your back.
In my case they installed the ANS brand back in 2002, the battery pack was not implanted. In 2005 for some odd reason the wires in my back came loose and tried 3 times but the scar tissue would not addhear. We then elected for spinal lamonectomy at t12 and drop a wider wire down that way. One of the wires laided flat enough to get coverage, but the 2nd did not, so 3 days later we did it all over again. That makes 5 times and we had 2 other attempts to implant a battery. The docs didn't think lupus caused the wires to come loose from the scar tissue but I question that. Good luck!! I would still do it again. Any relief is worth it right.
They should tell you they can change the programs when ever and there is new advancements all the time.
Hope this helps Dave ask ? anytime

[DAVEBLDR]

Hi Lily Dave here
Yes your right no meds for the lupus yet, the docs think i'm on enough with the 2 valve problems with the arortic anurisum (sp) and all the back surgeries along with several ruptured discs. But something has changed now and I hope they will change their minds. Thanks for your remarks, they mean alot when things get bad like this and docs don't seem to believe all the symptoms.

Thanks again to you and all who have replied Dave, in Michigan

[red24]

Hi Dave,

You have helped so much. Thank you very much. I'm so sorry that you have had such a hard time with your wires. You have made me again realize if there is any chance of getting some what of my life back then I have to chance this surgery. We all have a lot of different health issues so it is hard to say what can happen to anyone. I have Lupus SLE, RA, and a lung disease and the lungs are the ones that the docs worry about most. They have given me every senario possible of what can happen to me while under antasthesia. (can't spell) I either have a wheel chair I would have to look foward to in a year or less or the surgery. So you know which one I'm taking.

I wish you the very best Dave in trying to get your pain under control. Don't give up they come up with something new everyday. I would have never imagined two months ago that I could have a surgery do what the docs say it can do. I met someone that had the wire implant in 97 and she had to wear the the belt to wear the battery pack which is now implanted under the skin in the butt area.

Thank you so much again Dave. I will keep you posted on how things went for me. I will not get my implant until maybe the middle or end of September. My husband was injured on the job and has to have surgery ASAP so want to make sure he is taken care of first. It would almost make things here impossible if we were both down at once.

Have a wonderful day.

Deanna