Lupus Support Group

This is new to me. The Dr.s aren't even sure if I have lupus. About a month ago I started feeling worse than the usual aches and pains and then I just kept getting worse and worse until last week I was running a fairly high fever couldn't walk and whatever this is started attacking my heart. I was put in the hospital for 4 days and they were just amazed at how my body was attacking itself.I can walk with assistance now but I am very unstable weak and it is very painful. My heart is still having problems, I am starting to have seizures and still have a fever. This is crazy. I just want to get better and get back to work. This message might not even reach anyone but if it does can someone explain how this works. I don't want to feel so isolated and alone. Maemee [file]

maemee - you are not alone in this we are all here for you. This illness is very hard to diagnose and difficult at times to live with but knowing that there are others out there who understand what your going thru on a daily basis helps. There are alot of books on the subject of lupus and there is one in particular that I recommend "The Lupus Book" by Daniel J. Wallace M.D. it really made me understand this disease and I use this as a reference for any questions anyone has. Please feel free to post as much as you want or need to.

Hang in there!

Eva

Make them keep testing you. If you have to go to another doc then go. There is a trial and error period for most. I was diagnosed with several different things before they say "the wolfe". So just don't take "I don't know" for an answer. Someone will know, you just have to find that one. The other side is, once you find the once to "put a label" on your issue, then you need someone to treat it. You would think the one that labels it can treat it, but as we all have learned that isn't always the case. Take your health into your hands. If they are not sure, find someone who is sure of something.

Thank you for your encouraging words in response to my cry for help. I went to the doctor (specialist) today and I feel a little better which is strange at the least. He was great and told me I can deny all I want but he is sticking with this decision that I am permantly disabled and he is putting that in my medical records. He told me that I am still in a flare and that even though I am much better than last week that if I came in for the first time with the bloodwork as it is today I would be considered in a crisis. He said the disease attacked my body so bad that if I were a younger person I would be diagnosed with Rickets. He said adults can't be diagnosed with Rickets. I am still running a fever and today I had more trouble than I had been having with walking and even talking and breathing. I still have heart murmur. Thank you all. maemee

maemee,

I'm glad you have a good doctor. Take care. Rest and listen to your doc. If you have questions, ask away. Gen

maemee,

So glad you saw your doctor and Gen is right, you need to listen to your doctor and rest as much as you can your body is telling you to.

Eva

Welcome! I'm glad you found us. This group is great and filled with some wonderful people.

You need to ask 'lots' of questions. Ask your doctors, specialists, and us. We'll all try and help guide you in the right direction.

I'm sorry that your experiencing this. I know it's scary, frustrating, and probably overwhelming. It does sound like you have a good specialist though, so YAY to that one. Get your family and friends involved in helping you. It's very important that you take care of YOU and not worry about others and other things. You life has now changed and YOU are the important one.

Just keep hanging in there!

Hi,

I'm sorry to hear what happened but everyone is right it sounds like you are lucky to have such a good doctor...I hope you find out what this monster is attacking you soon so you can learn to cope with it. We are all here for you!

Kelly

Since 96' lupus has attacked my kidneys, liver,gallbladder,bones,nerves in my legs-hands-jaw and face,heart,bladder,eyes,bone marrow,veins(collapse),the lists continues.everytime i get one organ under control or at least functioning a little than before another organ either shuts down, malfunctions or swells up..my eyes scare me the most..to loose my sight would limit me so much. of course eventually after all the tears and breakdowns I'll be able to cope thats what i've been doing so far..

I THINK.

I am so sorry for all your struggles with lupus. I have CNS lupus and lupus vasculitis. I am fortunate because it hasn't affected any major organs just the nervous system and now I have a seizure disorder. It seems like when you get one thing under control something else flares up but again were dealing with lupus. I am here for you anytime and if you want to PM me that would be great.

Eva