PDA

View Full Version : 28 years old , Newly diagnosed -still testing



justomegirlindallas
01-11-2009, 01:59 PM
I had my long story so I could explain but it got deleted when I hit SUBMIT because my session had timed out.

I've had problems for a long time
Summary:
Joint inflammation and pain that has gotten worse with time and each episode. Most of this is in my hands and feet. Occasionally an elbow or a knee will be includes. Sometimes I feel pain in my back but its a very different kind of pain and I recognize it as the kind of pain that goes along with having kyphoscoliosis (which I have)
Unexplained fevers between 99 -101
"UTI's"or "kidney infections" that do not show actual infection on culture
(I have hematuria sometimes mild protein leakage - leukocytes and sometimes nitrites)
I have some mild scarring on my right kidney in the little filters and a little cyst.
Horrible fatique
Pleuritis (Took me many ER trips to determine that I wasn't having a heart attack - I have anxiety but I take a xanax if I have chest pain so I can tell the difference between a panic attack and actual chest pain (even though pleuritic pain is very obviously different from anxiety chest pains)
I have some visual disturbances - little fireworks here and there - no associated high blood pressure.
Anyway I could sit here and go on and on.
We won't even discuss my teeth...
Yes, I've been through two urologists (one referred me to the other) I've had 3 cameras stuck up my cooch, a VCUG and MRI. I have not had a kidney biopsy yet (though I am pretty sure its well on its way) The uro told me there was nothing wrong with my bladder (since when did I complain about my bladder? We're here for my kidneys) but then she said I needed to consider Interstitial Cystitis (though nothing in the test with the camera indicated IC. ooooooooooook.... I humored her, the diet kicked all of the fruit out that I usually enjoy- naturally I kissed my historically better than average Cholestorol out the door by my next well lady labs. (thank you for helping me destroy my body further! How much did I pay you for this? Sorry for the attitude - but I made my new years resolution that I can no longer afford to bend over and just accept hat my doctors say anymore - smile, nod and then go on only to continue to get worse while they continue to collect $$)

My GP dx me w/ Lupus after a positive ANA panel and a few years of problems.
he xferred me to a Rheumatologist who is no longer working so I got another one who has only been in practice 3 years. (according to the texas medical board site) She was really nice but she didn't seem to be "together" I filled out all of this paper work and expected based on the paperwork I filled out that she would have some idea as to my history before I showed up. She hadn't retrieved any of my records and had shown no interest in becoming famliiar with my history other than an oral history from me. At one point she even said 'I wish I had your past records' - well, why did I fill out all of that paperwork for you to get them?? hello? What broke the camels back was when I mentioned my visual disturbances during the periods of time I "get sick" and she said "Your blood pressure is probably high" She wasn't expecting that I had taken my blood pressure during this time the last several times because I was concerned about the same thing. My blood pressure was normal every time. The only time my blood pressure is high is when I have the urinary symptoms (flank pain, blood and stuff in my urine) anyway - her response to that was 'Make an appointment with your eye doctor, it sounds like your retinas are detatching' Thats when I realized it was time to move on. You don't tell your patients to make an appointment with your eye doctor if you think their retinas are detaching, you get their asses to the ER because there is a very small window of time to prevent the associated permanant blindness. (My spouse is blind, we've already been through this)

I didn't go to the ER because I knew my retinas were not detaching, this was just bs to get me to shut up. I humored her though and went to my eye doctor who said my retinas were fine but the disturbances I described were not coming from my eyes, they were most likely happening in my brain. My eye doctor recommended I get a new Rheumatologist (her attitude about the retinal detachment theory was like mine and I think we both agreed that how she reacted to her own educated guess was very irresponsible.)
I now have to see a Neurologist. My eyes do show changes indicative of a systemic inflammatory process. I also have hypothyroidism.
I've had two miscarriages - the most recent being Jan of 08

I got copies of my Rheum panel from the rheumatologist in the mail. I don't have positive Anti-DNA and Anti-SM antibodies. My complement levels are not low eiether. My CRP level was a little high and my sed rate was 11. These blood tests were taken during a period of time that I felt fine but my ANA Direct was positive at 209. I am changing Rheumatologists to one in a research hopsital where all of the specialists are in the same building and your chart follows you no matter where you go. I figure if I can keep all of the specialists in one building and communicating then my care won't be at as high of a risk of being mishandled as I have experienced up to this point while visiting specialists sprawled out over the metroplex (uro in one city, endo 20 miles from there, gp where I live and well I can't really call her my rheumy because I only met her twice and while she was nice, I think that patient/doctor trust relationship is permanantly damaged. I know doctors don't always know what is going on- and I expect mistakes because of that thing called being human - but I expect my doctor to tell me 'I don't know' - not fill me full of bullpoop.


I really don't know if I have Lupus for sure but after reading all of these stories it sounds like I may never know.

What I have seen consistently with most AI diseases in my research of Lupus and related AI diseases after getting my initial DX though is that Plaquenil can oftentimes help the joint and fatique issues associated with the diseases and minimize the need of taking nsaids. Would it be assinine for me to ask my new Rheumatologist if we can just try the plaquenil to see if it makes an overall difference in my problems? I am not interested in starting out with high dose pain relievers. I already take advil 3 times a day.

sorry for babbling. I had a very nicely organized post earlier but the forum ate it because it timed out and I hadn't copied my post before hitting the submit button( lesson learned)

sits_inthe_corner
01-11-2009, 05:00 PM
Welcome girlindallas

Glad you found us, and babbling is welcome here :D

Sounds like you have your plate full to spilling.

There are lots of great folks on this board. They are very helpful and understanding.

mountaindreamer
01-11-2009, 05:49 PM
welcome to you girlindallas,

My rheum gave me a medrol injection which is used in the diagnostic process. Evidently lupus responds to this injection with some period of time (app. 2 months) of relief from pain, etc. Other diseases do not respond.

Plaquenil takes app. 5 months to start working....don't know if the medrol injection is an option, but it is what I got, and it worked for about 6 weeks.

share a smile today,
again, welcom to the site

justomegirlindallas
01-11-2009, 06:13 PM
welcome to you girlindallas,

My rheum gave me a medrol injection which is used in the diagnostic process. Evidently lupus responds to this injection with some period of time (app. 2 months) of relief from pain, etc. Other diseases do not respond.

Plaquenil takes app. 5 months to start working....don't know if the medrol injection is an option, but it is what I got, and it worked for about 6 weeks.

share a smile today,
again, welcom to the site

Thank you! Is a Medrol injection the same thing as a systemic cortizone injection? My GP gave me one of those and it was a night and day difference for about 2 weeks. I even went jogging. I did hear though that those are bad for you over time which is why I was considering on asking about the Plaquenil

notsurerfh
01-12-2009, 08:51 AM
so much of your story sounds familiar to me. i am 29 and will be 30 in august. i have been to a urologist to and still have no reason why. finally got blood work from my doctor by pushing and refusing to leave until something was done.

i have the flank pain, blood in my urine, fevers, dry sockets and cavities and the floaty eyes. they still haven't given me an answer on my ana test because they wanted to find out what is wrong with my kidneys first.

i am telling you from experience to go to your docotor tomorrow and request a 24 hour urine test. that is what it finally took to find out why my kindneys were unhappy. i go today for the consult for a kidney biopsy. my doctor now believes there is something wrong with me. it has been 2 years that i took their crap and now i stand up for myself and get treatment i just hope it isn't too late.

still waiting for a dianosis but at least someone is listening to me now.

Saysusie
01-12-2009, 07:32 PM
Plaquenil is an effective medication for joint pain and fatigue. It also works well with dermatological issues of Lupus. It can be very effective for many with mild Lupus as an overall medication . However, if your disease is active and you are displaying other symptoms, you may need another medication along with the Plaquenil (symptoms such as Pleurisy - Prednisone usually works best for this).
Most rheumatologists will start treatment of Lupus with Plaquenil, so I do not think that it would be out of line for you to ask your Rheumy to prescribe it. I am glad that you will have all of your doctors in the same building, it will help for your records to be in one place and easily accessible to all of your doctors.
It is not unusual, in AI diseases, for ANA levels, SED rates & others to change. That is why these test are routinely run in persons with AI diseases, especially one like Lupus that is replete with relapse and remission.
I hope that your new doctors are able to get you on a treatment regimen that works for you. In the meantime, welcome to our family and know that we are here to help you as much as we can.

Peace and Blessings
Saysusie

Danica01
01-13-2009, 03:05 PM
Welcome :!: You have found a place where you will receive so much support and answers to your questions. You will always find someone who has or is going through what you are going through :D Everyone is supportive and very loving. I am so sorry you have had such a rough time :( Keep talking to us and you can vent to us about anything, we will always be here :!: Keep posting and let us know how you are doing. In the meantime, I am sending you gentle hugs and well wishes for healing :angel:

justomegirlindallas
01-17-2009, 11:18 AM
Plaquenil is an effective medication for joint pain and fatigue. It also works well with dermatological issues of Lupus. It can be very effective for many with mild Lupus as an overall medication . However, if your disease is active and you are displaying other symptoms, you may need another medication along with the Plaquenil (symptoms such as Pleurisy - Prednisone usually works best for this).
Most rheumatologists will start treatment of Lupus with Plaquenil, so I do not think that it would be out of line for you to ask your Rheumy to prescribe it. I am glad that you will have all of your doctors in the same building, it will help for your records to be in one place and easily accessible to all of your doctors.
It is not unusual, in AI diseases, for ANA levels, SED rates & others to change. That is why these test are routinely run in persons with AI diseases, especially one like Lupus that is replete with relapse and remission.
I hope that your new doctors are able to get you on a treatment regimen that works for you. In the meantime, welcome to our family and know that we are here to help you as much as we can.

Peace and Blessings
Saysusie

Thank you very much! I don't really care what label doctors want to put on the collection of symptoms I have, I just want a treatment that will work, even if that means waiting a few months to "try it out" I know its easy to get hung up on a diagnosis name but seriously, I could live without my insurance getting a DX code for Lupus... lets just see if the fairly harmless treatments work and go from there. Who knows, maybe it will keep me out of the ER for a year ;) Its not like I'm asking for narcotics over here... :shock: My very first systemic cortisone injection was end of 2008. I went jogging a few days later I felt so much better. That state of bliss lasted for a while - I just want to minimize steriod use for obvious reasons.

Thank you :) 8)