View Full Version : I just wanted to introduce myself...
02-20-2010, 05:23 PM
I am so glad that I stumbled upon this forum. It is so nice to know that I am not alone (even if I don't have a dx yet).
So after a year of having MS I have recently been told that I do not have MS. (I like to joke that I have been cured!!) The docs are now telling me that I may have Lupus. Fantastic!! I have gone through the regular riamarole- you know, loads of blood work, appointments, I even had a skin biopsy. So far, everything has come back negative (still waiting on the skin biopsy).
All that being said, I have two questions. Given that Lupus is mainly a clinical diagnosis, how can I ever trust that they have gotten it right this time? I know that I will never be 100% sure, I just don't want another misdiagnosis...
Also, will I ever feel better again??? I just don't know what to do!! I have had to stop working (I was a teacher), I can no longer drive, I am feeling totally isolated and barely get out of bed many days! I just feel awful! Doesn't Lupus flare and remit? Does anyone just feel awful all the time for a year on end?
Thank you so much for reading. I feel a little better!
02-20-2010, 08:46 PM
Welcome to WHL. I like Newbie smilies you found and put in your post. You have some good questions and I can't answer all of them, but I can say that Lupus, like many of it's "cousin" autoimmune diseases and disorders, does inded flare and remit and that these flares can last from a very short period of time to a very long period of time. I am sure some more members will be along soon to help you find your answers and that some of them have also experienced extremely long flares. I have had flares up to 3 months or so and know how much I hated that, I can imagine how awful you are feeling after a year of flariness. BTW - What do you teach? I was a teacher too and taught pre-k, k and 1st grades.
02-20-2010, 09:00 PM
I was a third and fourth grade teacher.
02-20-2010, 09:07 PM
Welcome to WHL.
I had to laugh about you being cured from MS.
Most people here have bad flares, but also have periods of remission. It is different for everybody.
But if you do have lupus, there is a good chance, that medication will help you.
Feeling this bad for a year, must be horrible. I hope the doc can help you soon.
02-21-2010, 08:43 PM
Welcome to WHL. I'm also a former teacher - I taught Latin in a high school, grades 9-12. I kept working through a lot of pain for three years. I had knee surgery during the winter break in 2008 and finished the school year using a rolling walker. My students got used to my frequent falls in front of the class and my awful voice (I'm also blessed with Spasmodic Dysphonia) I gave it up at the end of the 2008-2009 school year, since my hubby was transferred to California by the Air Force. I'm now getting used to not working - I really miss my students!
I've read over and over again that Lupus, Sjogren's and MS can be mistaken for each other. They all seem to have a lot of overlapping symptoms and it takes the docs a while to sort them out.
Hopefully, Rob will be along to chat with you. He has both Lupus and MS, so he can give you some good info on both.
Plaquenil is the med that many people are started on first for many AI issues. Hopefully, your doc will start you on it and you will start feeling better.
Keep coming back, and keep us informed.
02-22-2010, 08:13 AM
Hello and Welcome Woods;
You've already been greeted by some of our members and have seen how informative and understanding this forum is. You've also been given some good information. I just wanted to make sure that I popped in to welcome you also.
As has been said, Lupus is a disease that is replete with flare ups and remission. However, each of these conditions of the disease are dependent upon each person. There is no standard amount of time that these conditions can last. The purpose of treatment is to lessen the severity of flare-ups and/or to hopefully prevent them entirely. Most doctors will prescribe Plaquenil (as Magistramarla stated) as the initial treatment of Lupus. This is an anti-malarial drug which is also an anti-rheumatic drug. Anti-malarials are used to reduce muscle and joint pain, inflammation of the lining of the heart (pericarditis), inflammation of the lining of the lung (pleuritis), and other symptoms of lupus such as fatigue and fever. Anti-malarials are cumulative drugs and, as such, can take weeks to a month before you see significant results.
Due to this, doctors will often also prescribe a corticosteroid, such as Prednisone, along with the anti-malarial. Prednisone is an extremely effective drug and can quickly reduce the symptoms listed above. However, there are several undesirable side effects of Prednisone, so doctors do not like to prescribe it for long periods of time or in high doses. Often, Prednisone is a necessity in order to reduce symptoms or to reverse organ damage.
Being misdiagnosed is too common and happens too often. Partly because Lupus symptoms are similar to so many other auto-immune diseases. So, until symptoms develop or worsen, or lab results confirm diagnoses, it is very difficult to diagnose. Sometimes we are told that we have RA, or MS (as was your case), or some other AI disease because our symptoms and/or lab tests do not point to any specific disease. There are eleven criteria used to diagnose Lupus and you must meet at least four of those criteria (see sticky in "Newly Diagnosed"). That does not happen for all of us, so many of us find ourselves in the "no diagnoses yet" limbo.
We are here to help you in any way that we can and to let you know that you are not alone. I am so happy that you found us and that you decided to join our family.
Peace and Blessings
02-22-2010, 11:45 AM
As the others have said, Welcome. I can sy much about flaring as I'm still learning about it. This last flare of mine started last July and is still going. It seems that lupus affects everyone differently; so I've learned to practice patience and understand that the medications don't always work right away.
hugs and patience,
Living Life to the best of my Ability with patience
02-23-2010, 09:55 AM
Welcome! Everyone is right! It is hard to get diagnosed and so many things can change. My doctor once told me that my auto immune disease is like a flower. The seed is planted and it really is there. It takes time for it to grow and bloom. It is kind of weird thinking of something so difficult as something as beautiful as a flower but he is right, once it blooms we can actually treat it and feel better. I have to be honest, I have never felt as good as I did before I got sick but you do learn to cope and get through it. You learn to change your life because your life depends on it. You will have to learn to be selfish and put you first and I know that is hard being a former teacher. You have put little ones ahead of you for so long, now it is time to take care of you! You made a huge step forward by coming here. You will always be surrounded by love and support through all of this, we promise!!!!!!!
02-23-2010, 09:48 PM
i can't add anything to all of the other posts, i just wanted to stop by and say hello and welcome....as you can already see, you have stumbled accross the best place for understanding and information....
since diatnosis of lupus or any other auto immune disease requires criteria that include lab results along with physical symptoms, i recommend that you read about the various symptoms that we deal with here at the forum. you might come accross some symptoms that you experience, that you did not even realize were common with lupus. any additional knowledge that you can gain will ultimately help the drs. make a diagnosis.
best of luck to you, so glad you are here with us.
02-26-2010, 05:53 PM
Thank you to everyone for responding!
02-26-2010, 06:32 PM
Hello and welcome and so glad everyone have given you great info which i can not top.I once was told i had Lupus but now have Chronic Fatigue :) Im so sorry you are going through this,but hope soon you get the help you need.Sorry to hear you had to give up your job too.All the members will help you where they can they are all lovely.I too have many days in bed also,but its not like this forever i hope.Just keep fighting and posting here.
Glad you found us.
02-26-2010, 07:42 PM
(((hugz))) i know i just joined like right now but i can relate to you.. and worse part is that im a new mother.. so i really have no choice but to try to push through the pain and hope that i dont drop my daughter.. people around here started to think i was lazy because i kept asking them to get me stuff when i had the baby in my arms.. but my knees are so affected that when i sit and stand up again it hurts like hell.. and im scared im gonna drop my baby.. so anyways.. i've stopped asking people for help.. i just struggle through and do things in my own slow pace.. im so sorry that you had to stop working.. im currently on vitamin d once a month.. folic acid once a day... methotrexate once a day.. and the other pill.. i forget the name.. its a little long white pill.. which is twice a day.. and for pain.. i take.. excedrin extra strength.. people think its just for headaches.. but its the only thing that calms my pain..
oh ps. i remember the name of the last pill.. plaquenell.. idk the spelling.. idk about anyone else but medroll doesnt do crap for me.. idk about pregnazone havent tried it but i dont wanna gain weight so yeah..