[imyy4you67]

Hi everyone:

I wanted to update everyone about my unsolved mystery over the past 4 years of going from Dr. to Dr.. I was finally diagnosed with SLE by by my local Rheumy in June of this year. Since he seemed unsure about it all the other times I decided to go for a second opinion. Last Monday , My husband and I went to NYC to see a Lupus specialist at Mt Sanai medical center. The Dr made me feel so relaxed and made me feel like I am not going crazy. She reviewed all of my records from the past 4 years. I brought everything. I wanted to cover everything. She spent a good 1 1/2 with us and examined me. She left the room to look over everything and came back about 20 minutes later. She sat down and was very reasurring and told me YES I do have Lupus and that my Rheumy is correct but it sometimes takes years to put all the pieces together and the last piece to the puzzle for me was the ANA of 1280 along with all of my symptoms. She told me I will need to stay on the Plaquenil probably forever. The thing is I have been on it now for almost 5 months and I feel a bit better but still have muscle pain in my legs and sometimes feel so tired I cant function. Is that going to get better?? I also mentioned to her that my hands are always red and that I have told my Rheumy about for a few years and he says "I am not sure what that can be". This Dr says right away that I have Raynauds disease along with the Lupus. Come to think of it they do get blue and white in the winter or when it is cold and they get red and swollen when I am stressed and when its hot. Also my ears and tip of nose gets red as well. She hit the nail right on the head. I really liked her. I am thinking of switching my local Rheumy to someone else because i told him about my hands and even the rash on my face and he told me I need an endocrinologist because he is not sure what that is from. It is the malar rash . This Dr. picked up on that right away also. I always comes out about 1/2 hour after I am under fluorescent lighting (her office) . I get it all the time at my office also.

Well sorry to write a book about my visit but I wanted to update everyone on this. I took the news quite well but lately I have been crying a lot and just feeling so sad saying how could I get something so horrible. No one in my family has anything like this. I also had a very stressful life growing up and a very abusive first marriage and death of my grandmother 4 years ago whom I was very close with. It was 2 months after she died that I got sick. The Dr. seems to think all the stress took a toll on my immune system.

Well Thanks for listening. Hope all is well with everyone.

Kim:worried:

 

[KarolH]

Hi Kim, from one Jersey girl to another.

I was also dx with Lupus in June along with some other overlap things too. I was told I had MS in 2005 and always knew I did not have MS...they were missing something. Well, eventually things do show up in our bloods and we get the correct diagnosis.

For fatigue, I take Provigil. Ask your doctor about it. It is wonderful and works great. The plaquenil can take up to 6 months to be fully effective and I have heard many people say it also helps with fatigue too.

I am sorry about your past marriage and the death of your grand mother. Life is tough sometimes but I always look at my past as a learning experience or life lesson. My dad died in 1989 and I still miss him terribly and will cry on his birthday, a holiday or when I visit the grave. When we loose people close to us it is very hard. I know your grand mom knew you loved her dearly.

I am so sorry about your diagnosis yet it is good to know what is wrong so we can get on the correct medicine and get to feeling better. I hope to get to know you better, after all your my neighbor.:wink2::wink2::wink2:

 

[MichelleAnn]

Kim,
Welcome!! I have a simular story as you and it took me a few years to get a diagnosis. My ANA went to 1:2560 and SSA positive and some other things that a new RHeumy at my hospital finally took the time to go over my records and history and diagnose me with Lupus. Ive had many losses in my family also and im sorry to hear about your grandmother. I lost a son, then my marriage, then my grandmother and finally my mom. In there somewhere the kids and I moved to a new home, and I became sick and had to leave my job. Life is hard. I always tell myself it could be worse, the hardest was for me to realize I am no longer the person I was before I got sick. I cant do what I used to do, and things can wait. I feel like I lost everything but my children and gain many different stressors especially money and not working. But it could be worse. Lupus is usually not terminal nowadays. Lupus just makes u feel like you've been hit by a train. I was told also the stress of so many losses also lowered my immune system and Lupus took over. I hope you find Peace. Take care!!

 

[Katharine]

Hello Kim,

I just wanted to try and answer a couple of your questions there. Whether or not you will improve more on plaquenil is a very hard question to answer. Firstly, for some people, plaquenil is not enough and may need supplementing with something else. Secondly, it can take a varying length of time to kick in fully. I have recently seen an improvement in my disease control and stability. As we haven't changed any meds, I have a feeling the plaquenil has finally kicked in fully (other than an improvement in skin issues, I hadn't noticed any effect before). This is 18 months later. For some people plaquenil can take as long as that to work. Sometimes the difference seems so slight as to not be noticeable and it's only when people go off it for one reason or another that they suddenly realise just how much good it was doing.

A firm lupus diagnosis does bring a lot of mixed feelings with it. On the one hand many of us are releived to finally be taken seriously and to be given some hope of feeling better. On the other hand, you have just been diagnosed with a chronic and incurable disease. It's pretty normal to feel a bit all over the place. I still keep thinking someone will turn round and tell me "well, actually, we made a mistake, you don't have lupus". I mean, I know that really isn't going to happen but my brain keeps surprising me with that thought all the same.

It's very important to share your feelings. I found that I certainly couldn't talk about it to friends and even family. My husband has been a rock but even then, he can't fully understand what it means to feel so utterly exhausted everyday. How can anyone understand that if they haven't felt it? Once I got my head around actually "complaining" as I saw it, I have found it of immense help to come here and share what's going on.

sending you loads of strengthening hugs
:hug:

Katharine

 

[imyy4you67]

Thanks for all the support on this site. I see that some of you have it a lot harder than me. MichelleAnn, I am so sorry about all the deaths in your family and the loss of a marriage. My thoughts and prayers are with you. Thank goodness I am able to work still although my legs hurt all the time. My muscles ache constantly and they feel so weak. I definately do not feel like the same person as before I got sick. I used to be on top of everything- housework, laundry etc... now forget it, i let things go very often. I just cant do it. Karol from NJ, thanks for the advise on the Provigil, I will ask the Dr. at my next visit. I am very tired and no energy. I dont want this to interfere with my job. I love what I do. I am a Medical Assistant/ Stress Tech for a very busy Cardiology Group and I really love it there. Everyone at work knows about my disease and are very supportive. I do not complain at work because it doesnt look good but sometimes I just need to sit because I am on my feet all day long. I keep a lot of my complaints to myself because no one likes to hear the complaining all day even if they do understand and support you. My husband is very supportive but he really doesnt understand how I feel all the time either. Its hard to imagine unless you have been there. Yes it feels like a train hit me. I even look sick sometimes in my face, I have rings under my eyes which I never had before and the malar rash that was just red before is now forming little bumps which makes it difficult to cover with makeup. Anyway I am goin on and on. I just want to says thanks to all the replies, they really helped me.

Kim

 

[LolaLola]

Hello Kim,
Try to be patient, it will improve.
x Lola

 

[helloos]

Hello there.

Your story is similiar to mine as well...although it didn't me years to get diagnosed but it took a lot of doctors and a second opinion who I am with now. Your appointment sounded thorough and that is good.

The plaquenil was not a miricle worker but it did slow things down and make things last shorter. More manageable.

It is a rollercoaster of emotions, but at least now, you know what the problem is and you can help for it. The right kind of help.

Learning to prioritize is a must. It takes practice but sometimes things go left undone and I say oh well. So long as the necessary things are done. I was a very active person before, so now I am not as active, I try not to be hard on myself if I cannot attend something, I listen to my body, and I have learned to let things go......that was a hard one for me.

Your story also familar is things started with me after my grandmother died. She was my best friend and like a mother to me. I would talk to her at least 3x a day. No one could understand how much I talked to her and how our relationship was. I mean my friends. Because she was my best friend ever. So watching her die to cancer and being there through the whole thing was very tiring. Shortly after things started happening....... it does make you wonder.

I hope you start to feel better.

 

[marymackay]

You are helping us all

Hi Kim

thanks so much for posting to let us know that you are finally d/xd after 4 years. It is heartening to us all, :wink2:as we struggle to find that believing, understanding doctor who takes the time to consider us as a person.

Those who commented on your post are also full of information and experience thanks. I think the key factors in your post was that your new doctor took the time-a :blush:wonderful hour and a half, and even looked again before d/x.

As a sufferer who has had no specialist in my area, I have had to get on the web and find rheumys/dermys to get appointments, and my GP referral. I have to fly down and back in a day. This is usually privately as the public hospitals take over 6 months if then. That means I only get half an hour appointment, then fly home, and because of my medical history, blood tests and scans, my emerging symptoms over the last years are often glossed over as is the physical exam.

The reports coming eventually, sometimes months to arrive, don't say anything. We are just starting to get some visiting specialists:hehe:.

So thanks for your post and your words of wisdom, they help to shed light on problems so many of us face, and give us hope to get more than a d/x of lupus/like symptoms, although that led onto my Plaquenil, a year ago. It has helped greatly, but not my skin-scalp etc, and myriad probl:wink2:ems as yet. I look forward to seeing your posts, and all the best.