I went and saw another doctor today. She is not an RA but has studies everything and deals with almost everything. She confirmed my lupus and said it is not borderline but in fact Lupus. She is keeping me on plaquenil but also looking into and dealing with a lot of the side issues like my Vitamin D dificiancy and PCOS. I also have Raynolds. I gave her all my blood work from every doctor all the way back to 2007. She has spotted things that no one saw. She saw latterns and how my thyroid is escalating and I am becoming prediabetic. She also gave me a big kudos for researching and knowing my blood work and what everything meant. She said I’m a smart cookie :). I am so happy that someone has finally helped me and really cares. I’m not happy that I have Lupus but I am happy for a straight answer and real help. As of today I can finally more forward and start to get back to “normal”. It’s cheezy, but today is the first day of the rest of my life. Finally I can get well enough to work and visit friends or even drive. I miss driving. I miss going upstairs. I want to work again and hopefully date and get married. I want children.
I think finally I can move forward and manage this lupus and get in with my life. Finally!!!
It seems us LUPUS, RAYNARDS, RA, etc patients do most of our research, due yo how Drs can react to us. But in time we will find a great onemy primary physician monitors me monthly on my labs. My RA has a Standing Morder and gets same results, since May of 3012 when I started seeing new RA, he has yet to call ke on my results. My Primarcas me within 24 hrs regardless if labs good/bad. Unfortunatley its not been good for about 6 months. My sedrateis at 270, no call from RA,
I say itthis Dr you found makes you comfortable and is straight up with you. Keep going there. RAs r just into research and RXs.
Plaquenille, caused my color blindness, and blood clots in Retinas.
Hi, I’m glad you have found a good doctor who is straight with you. I agree that this is the beginning of h ret of your life. Try to keep a positive attitude. I have been taking Plaqunil for 16 yrs and have only just started getting eye problems, I also have been able to work part time, full time is out of the question.
Stay positive and take care,
Karen
So glad you found a good Dr and that now you know what you are dealing with. My family member with SLE is also very smart and did lots of research, like you. Kudos to you for being so smart and determined! Stay strong!
Congratulations for finally getting answers. I know that was the hardest part for me. Feeling horrible and having strange stuff happening but not being able to find out what was causing it. I am going on my first year of being diagnosed with Lupus. I’ve had good days and horrible days, but building a great relationship with my rheumatologist has helped to give me back my life.
I am really pleased you've finally got a diagnosis with a good rheumo by the sounds of it, it just needs dropping on the right person and now you know where you stand regarding your diagnosis and other underlying symptoms which you did'nt know about...regarding moving on with your life all the best but please always remember to take things in it's pace.
Well we have a Raynauds group on the main page you can join as you know, is she going to sort your thyroid out for you and did she mention if you have an overactive or underactive thyroid, if not these questions you also need to know plus you becoming a prediabetic will that be treated?
MoeMoe being with LWL as also helped you for preparing yourself with Lupus which is great and you sound like myself all you want is straight answer.
For me it is always better to know what is going on rather than not knowing and letting my mind go crazy guessing.
Good luck to you and the rest of your life. Mecay
Hi Moe, a lot of the things that you posted here is very correct about Lupus. When I was first diagnosed with it my Rhuemy put me on vitamin D3, DHEA is for energy, Omega 3&6, and Folic Acid is very important for any Immune Deficient disease because it is for cell health. When ever my B vitamins get low on my lab test results my Rhuemy ups my Folic Acid right now I'm on 800 mg per day up from 400 mg daily. I think I caught mine early enough that I did't have alot of damage in the begining. My pain started in my feet then moved up to my ankles, then my right shoulder. Because I'm a nurse I realized that I was not having just normal arthritis signs but something a lot more serious. I used to have trouble walking in the mornings due to the pain and I would just take a pain pill and wait 30 minutes to start my day, I did't connect my symptoms with the amount of stress that I was also under but I knew that stress can cause a flare up. I also have a thyroid condition and I have Crohns disease and my Sed Rate can get quite high (i.e, inflamation) so I thought that it was my Crohns flaring up. My primary Dr. did a complete blood panel on me and it came back indicating that something was going on with my ANA and to get it further diagnosed by a Rhuemy. Right now I'm taking Plaqueil, Methotraxte, oxycodone but only when the pain gets too bad to handle and I take tramadol during the day for pain . I take Synthroid, and my vitamins I make sure that I get plenty of rest, you must listen to your body it is very important, if you are feeling tired you must listen to your body and stop what you are doing and just rest. In my personnal life I still work part time due to my Lupus but I feel that it is important to me not to let my illness control my life my beliefs are to take my meds and go on with life. I also get the Butterfly rash on my face and neck and the Sun is like my Cryptonite it takes away my energy if I stay in the sun too long. So I found a company that sell cover ups that have UV ray protection made into the fabric so I wear a cloth facial mask on my face and dark gargles over my eyes to protect my skin from the sun rays. I look like a Bank Robber driving down the street and I laugh at how the people stare at me, but I don't care because like I said I will not let my illness keep me from living.
I reall hope that I gave you some hope that you can bet this disease or at least find ways to not let it defeat you, live your life inspite of this awful condition that we live with. IT CAN BE DONE!!!!!
One good thing for you is here you will find a whole group of folks who know the “Thank Gawd for a diagnosis…holy crap now what???” Feeling!!! And you’re right. It’s the first day of the rest of your life! A life where you grasp this beotch Lupus by the gonads and RUN WITH IT!!! :). Yay for us! There’s a verse in the bible that talks about being thankful and embracing things like this because God loves us enough to bless us with such challenges. I believe it and you will too!!! Xo
Moe, so glad you finally have clarity with your illness and symptoms. Yes, I can agree there is that mixed feeling of not wanting it to be Lupus but relief in knowing what you are up against and can take more of a proactive approach in your care. The word Lupus first came into my life in the late 80s. there are STILL days i have denial, that i can’t possibly have this serious " dis-ease". I am on a constant battle with balance…knowing when to stop and rest. On my better days I just want to keep going and get as much done as possible. WRONG! That gets me nowhere but flat on my back the next couple of days. I think one of the most important things for me to remember is that I must let my living control Lupus and not let Lupus control my life. Stay with this wonderful community and you will learn so much and be cared for. Best to you my dear sister in life…hugs everyday ~Maré
I love this "borderline " lupus diagnosis … It is like saying “!you are borderline pregnant” … Let us clarify this… You either have lupus or you don’t. Because Lupus is not a cookie-cutter type of condition… Everybody is afflicted at different degree… BUT you still have Lupus!
Fantastic comment and i could'nt have said better myself "SPOT ON" :)
Hui-Lim Ang said:
I love this "borderline " lupus diagnosis ... It is like saying "!you are borderline pregnant" ... Let us clarify this.... You either have lupus or you don't. Because Lupus is not a cookie-cutter type of condition... Everybody is afflicted at different degree.... BUT you still have Lupus!
So glad you finally know what's wrong and now GET YOUR LIFE (in the voice of Tamar Braxton)!!! Kudos to you and keep up the good work, but continue to take care of yourself and you can have what you want in Jesus Name! Amen!
I fry if I go in the sun after 10A and before 4P. I have a great hat that is SPF 50 with a 4 inch brim. Where did you get the facemask? My hat does really well but sometimes I'm not fully covered if I lift my head up. Perhaps we can share sources for sun protective clothing that isn't out-the-back-door (means something like "shutup") expensive?
I made so many mistakes in dealing with my doctors, kinda allowed them to lead me around. However, since coming to this site I have made it a priority that the docks talk to me. Seems like I may be turning a corner with my new rheumy. Lupus is always a huge challenge. We're here to lighten the load.
Bless you,
Ms. P said:
Hi Moe, a lot of the things that you posted here is very correct about Lupus. When I was first diagnosed with it my Rhuemy put me on vitamin D3, DHEA is for energy, Omega 3&6, and Folic Acid is very important for any Immune Deficient disease because it is for cell health. When ever my B vitamins get low on my lab test results my Rhuemy ups my Folic Acid right now I'm on 800 mg per day up from 400 mg daily. I think I caught mine early enough that I did't have alot of damage in the begining. My pain started in my feet then moved up to my ankles, then my right shoulder. Because I'm a nurse I realized that I was not having just normal arthritis signs but something a lot more serious. I used to have trouble walking in the mornings due to the pain and I would just take a pain pill and wait 30 minutes to start my day, I did't connect my symptoms with the amount of stress that I was also under but I knew that stress can cause a flare up. I also have a thyroid condition and I have Crohns disease and my Sed Rate can get quite high (i.e, inflamation) so I thought that it was my Crohns flaring up. My primary Dr. did a complete blood panel on me and it came back indicating that something was going on with my ANA and to get it further diagnosed by a Rhuemy. Right now I'm taking Plaqueil, Methotraxte, oxycodone but only when the pain gets too bad to handle and I take tramadol during the day for pain . I take Synthroid, and my vitamins I make sure that I get plenty of rest, you must listen to your body it is very important, if you are feeling tired you must listen to your body and stop what you are doing and just rest. In my personnal life I still work part time due to my Lupus but I feel that it is important to me not to let my illness control my life my beliefs are to take my meds and go on with life. I also get the Butterfly rash on my face and neck and the Sun is like my Cryptonite it takes away my energy if I stay in the sun too long. So I found a company that sell cover ups that have UV ray protection made into the fabric so I wear a cloth facial mask on my face and dark gargles over my eyes to protect my skin from the sun rays. I look like a Bank Robber driving down the street and I laugh at how the people stare at me, but I don't care because like I said I will not let my illness keep me from living.
I reall hope that I gave you some hope that you can bet this disease or at least find ways to not let it defeat you, live your life inspite of this awful condition that we live with. IT CAN BE DONE!!!!!
My sister was under the care of dr. Gary l. Sultany from ohsu. She used a product called a.m.p floracel under his care (she has lupus nephritis). By using this product her symptoms have been 100% suppressed. If she stops taking it her symptoms do come back. There is also irrefutable blood work to prove it! She only got worse on their medications but, this unconvential approach saved her life. Take care, Jeff
Sorry to hear about your hands but i'm the same where my raynauds is concerned and still snowing here is'nt helping one bit.
I hope the plaquenil helps soon, sometimes it just takes that bit longer for some members...i take paracetamol which only edges my pain like yourself but just be careful regarding Tramadol..you may wish to read this dicussion on them which Bobbie started a while back.
I know it hard but if you can fight getting depressed all the better as Lupus thrieves of it and you will feel symptoms more harder.
Well at least your taking protection with the heat but if you do sit out keep to the shade but if you feel your skin burning or irritation starting get inside these are always the signs.
Just hearing off you my friend helps we all know your ok otherwise.
Love Terri xxx
MoeMoe79 said:
Thank you all for the wonderful comments. I read each one and could only reply to a few. My hands start hurting when I type. I can usually sit on the computer for a couple mins but then I have to soak my hands in paraffin wax.
I got really bad 3 weeks ago and things are going down hill fast. I lost it last night and cried my eyes out. I stay positive and I know in 6 months the plaquenil will kick in and I'll feel better but it doesn't help me now. I am in so much pain and pain killers only take the edge off. I refuse to take anything stronger than Tramadol. I'm trying to not get depressed but man this sucks lol
I went and got a hat and I cover myself up when I go out but I'm hot and annoyed and feel stupid. But better that then a fare I guess. I got a shower seat and that helps a lot too.
I just miss my old life and I'm shocked this is who I have become.
Thank you all again! I may not always be about to write you but I read all your posts and I give all my love back to you!!!!
