new reuhmy

[DAVEBLDR]

Hello everyone,
It's been a great day. Woke up to 1and1/2 inch of snow, 35 mph winds and 34 degrees. Great for us with sore joints and muscles. Then went to visit the new reuhmy at 11:40. My GP sent him the biopsy report from 1988 which said final dia SLE. We all so collected 5yrs of blood and urine test from other doctors and asked the GP to look over and forward on as well.Those test I thought showed 3 diff ana test pos 1 at 1:80,2 at 1:160, also showed wbc clumps in the urine on diff tests, wbc where in normal range but just. Plt count low as well. There where also many that where normal as well,but coming from Mayo clinic and Cleveland clinic and Pain Management I thought may help find a answer to the way I've been feeling. Also was 2 biopsy reports that just said consistent with Lupus. Well I got in and he introduced his assist asked what was going on, then looked at his watch,then back at me, I told him. He then looked at his file found the blood work he ordered in Nov and asked why are you here? I told him the Dermy thought I should be on diff meds to keep the Lupus from progressing. He told me his test showed all normals so it could be discoid butt not systemic because with serious cases of Lupus,ana will not go back to neg. By the way he never looked at test from GP, likes to order his own. Thanks for letting me vent. Is it alway this hard?

Thanks for listening: Dave

[MJA]

Hi Dave,

Yes, sometimes it is this hard -- and you'd like to slap someone... Sounds like the doc had other things on his mind besides his patient. Hopefull he's right and you're dealing with discoid. Being you're a male, perhaps you have even a harder time getting the right diagnosis because most lupus patience are female and some doc just aren't open to the possibility. Years ago I ran into a doctor who didn't believe there was such a thing as lupus and it was all in my head!

The best of luck and I hope you find some answers very soon.

Mary

[red24]

Dog gone it Dave I'm sorry you are going thru all this. The one thing I hate the most is when a doctor has to look at his watch. It makes you wonder if you are a dollar sign or a patient. I never return to a doctor that does that.

I have negative ANA and I'm supposed to have SLE Lupus. If it is true what the doc told you then I must not have SLE Lupus. You know Dave, I have been to so many docs and for every doc that I have been to they all have a differnt answer to what is going on. Makes my head spin at times. I decided only to have one doc for my RA and Lupus, one for my lungs, and one for my back. I find it makes life easier at times. My family doc is my venting board he is the greatest.

I have questioned so many times if I do have Lupus or just RA since both are auto immune disorders. I read some of the post here and have to stop and think about what I have read. A lot of symtoms other members are having I don't have. I know that Lupus hits us all different but others are having things go on that I have never had. I have to tell you that I have taken nothing for almost one year now for the Lupus or RA. A lot of people including docs say I look healthier then I have for sometime. Most of my blood work is coming back normal. Now it really has me baffeled about having Lupus. I will go to the rheumy doc and we are going to have a good set down talk. I'm sure I have RA but I do question more then ever now if I have Lupus. I do not recomend that anyone else go off their meds. this was my choice only.

My gosh here I have went on and on. I have to thank you Dave for me venting. I guess what I'm trying to say is that it is never over and it will remain a mystery for me forever. I wish you all the best Dave to find all the answers you are looking for. Please keep me posted.

Have a wonderful day,
Deanna

[michelledub]

hi dave,
i'm new to the site but not lupus. sorry your doc not seem to care much my gp was like that b4 i was sent to a derm. he told my mum i was a cosmetic emerg not a med 1 and he'd have me sorted b4 i got appt then he'd look a fool wont say what mum did. i was lucky it was my skin was my prob then now it my kidneys. my lupus team are the best and he no longer is my gp.
so i know how down you must have felt.
hope it all gets better soon
michelle

[Douglas]

The medical professions are at best a mixed blessing, at worst an unmitigated and sometimes fatal disaster. If I had not switched MDs I would still be in pain all the time.
Douglas+

[DAVEBLDR]

HEY DEANNA
Good to here from you and everyone else. Sure is nice, it keeps the hope alive. Any way, have you had your stimulator installed yet? I've been thinking of you since I heard. Keep us informed. Should take only 7 day or about the time your stapples are removed for them to turn everything on and start the adjusting. Just remember have the min of 3 diff programs installed along with 3 diff signal to at least 1 program that is what I found that works the best. I would also stand to set one and lay down for one or you may find it hard to lay on your back and turn over. Just a thought, hope it helps


Thanks again Dave

[red24]

Hi Dave,

Was so glad to see a post from you. I was getting worried about you maybe being in the hospital or not feeling good.

No I have not had the implant as yet. My insurance company denied me due to lack of documentation. My doc has sent in a appeal and added lots more information. Insurance companies can be a pain in the butt! I have a very good insurance but for the implant surgery I need to have it preapproved. Have never been thru this before. I'm now looking at another 2 weeks for the insurance to reply back. It will take at least 3 weeks after the approval for me to have surgery. I'm getting anchors put in to hold everything in place and in order for that to be done I have to have my spine doc there also and of course the guy that has the impant stuff. So they all have to be able to have the same time schedule. Always something Dave I tell you.

I have wrote down the information you gave me and will give that to the doctor. I'm in such horrible pain now that it is incredible. Don't know what I will do if the surgery is put off for very much longer. I know you know what kind of pain I'm talking about since you have went thru it and still going thru it. Of all the money that is paid for our insurance premiums it really makes me mad that I have to go thru all these hoops. I will keep you updated Dave when my surgery is scheduled. I never ask much about the surgery but when you said staples it has my mind a working now. Do they cut your back to the lenght of the impant?

Enough about me how is things going for you? Are you still with the rhumey doc that looked at his watch? You know I wish you all the best Dave in getting a good doc who takes the time to figure out things for you and gets you on the right track of meds. if that is what it takes.

I think for sure you told me that you were married if so please give your wife a big hello from me. I have been married for 41 years now and don't know what I would do with out his love and support.

Ok Dave have to go please remember to stay in touch. Take care of yourself.

Your friend,
Deanna

[DAVEBLDR]

Hi Deanna

Hey that is all part of this new tec stuff. I think I went thru the same thing, but with mine I started at cleveland clinic where the guy that invented this stimulator was. They where turn down 2 times till we just went through the pain clinic here at home. Had to go see a shrink that was crazy in it shelf,but i guess when they put something in your body like that you should really give it your full attention. Any way to answer your question, they make about a 4 inch cut then feed the wire with a rod,that is what was the worst. I think there was about 10 staples is all, about the same as a disc surgery. Then when they remove the staples and turn on the stimulator you wont believe how great it will be,you'll want to tell everyone. But that's why you should have several programs so as the swelling goes away the sensiitivity is allways changing.You'll see it's amazing, it will even show you how every thing in your body is tied together.
Now about the rhumey, I'll never go back there. I'm calling my cardio at the mayo clinic, he's great and because of how bad my valves are and the anurisum is he wants me to have no stress at all, if there is such a thing. It also helps when he is the best in the world with heart valves. When he calls he knows the best and some how gets you right in. So i'm hoping he can get me into someone there.
Also I did say I was married. It's been great for 34 year,I can't believe I've been able to fool her for this long. But she's great.
Let me know if you have any other question.


Talk to you later and take care.

Dave

[red24]

Thank you so much for answering my questions. You have been so much help.

Have a wonderful day.

Your freind,
Deanna

[sjay66]

HI Dave welcome to the Lupus board, my name is steve. yep doctors and alik can be like a maze of landmines I reckon, one wrong one and you could pay for a long time without a proper diagnosis and therefore treatment. I have found that the best way is to shop around with Doctors and Rheumys until you find one who is not negative is willing to listen and is prepared to work with you to ascertain what is going on with your body. I never let any doctor or specialist treat me with contempt, if they do I simply get up and walk out. Remember we all pay good money to them to perform a service and if they are not doing that to your satisfaction then find one that will. It has happened to me in the past, but through persistence i have managed to score 1 great doctor, a prime specialist and a great pain management doctor.

Look after number one mate... you

Look forward to chatting further

steve