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Thread: Newbie - Pre Diagnosis

  1. #1
    Join Date
    Aug 2009
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    Default Newbie - Pre Diagnosis

    Hello All,

    This is all so new to me. I have always been a pretty healthy person and will say that in over 26 yrs in the work force I have called in sick maybe 6 times my entire life. All of that suddenly changed about a year and half ago when out of nowhere I suddenly developed like 30 symptoms. Now I can look back on it all and can tie a few of the symptoms back to 3 or 4 years ago.

    I have had multiple doctor over the past 1.5 yr and we have made VERY little progress in determining what is wrong with me. I will say that it has been one MISERABLE (and somewhat scary) 1.5 yr. Two weeks ago I went to a new Neuro and he mentioned Lupus. Upon returning to home and doing much research, I am 99.99% confident that this is what I have. I hope they prove me wrong, but all of the symptoms can be tied back to Lupus and that has not been the case with all other proposed suspicions of what I have. Doctors have thought that I had MS and several other possibilities. Of course there has been times where my own mind has run wild and I have made up many other possibilities myself .... cancer, etc ... you can only imagine.

    I am somewhat relieved that this new Neuro seems to be on the right track. While I do not want this disease, I do want to know what is wrong with me and I want to start some type of treatment. I know whatever I have that it is not something simple and it is not going away.

    Some of my symptoms include:
    - Rash at my neckline
    - Random rash on elbows, hands, feet, legs, scalp.
    - Shortness of breath
    - Chest pain / pressure / discomfort / feeling of having a heart attack
    - Fatigue ... Extreme at times
    - joint pain
    - muscle twitching
    - Hands change color. (red / white striped)
    - random pains
    - hands and feet tingle / fall asleep
    - scalp tingling / buzzing
    - Cognitive problems
    - Bladder problems
    - Digestive/Bowel Problems
    - mouth sores
    - white buildup in ears
    - pain behind my ears
    - join stiffness
    - stiffness/swelling in back of neck
    - Flares after being outside in the sun
    - Sweating

    The doctor is running some lab tests and I go back to see him next week. I hope to get a referral to a Rheumy and get on with some treatment.

    Of course, I am full of questions and concerns ...

    Will I be able to continue to work?
    How quickly will this progress?
    What have others experienced?
    How costly is the typical medications?
    ....... many others ... but I've rambled long enough.

    I hope you all are doing ok today and having a decent weekend. I am guessing I will get to know many of you in the time to come.

    - SirLupAllot
    Last edited by SirLupAllot; 08-23-2009 at 10:08 PM.

  2. #2
    Join Date
    Dec 2008
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    Thanked 94 Times in 83 Posts

    Default hi

    Hi Sir......(Angel bows)

    Im so sorry you are scared and have so many symptoms.I understand how it feels as i too am going the diagnosis stage.Just hang in there as the members will come and welcome you and give you answers that you need.Members here have Lupus,diabetes,Raynaurds,Chronic fatigue Syndrome,MS and many other illnesses so as you can see im sure your answers will be answered.Saysusie is the lady who set up this site and she is very knowledgeable and Rob is the moderator ,also has tons of information as they have Lupus and other illnesses.You will meet many members who are very kind and loving so just watch this post fill up.
    Yes you will be able to work again,many members here do work.Once the diagnosis is given meds will be given to you and slowly you will begin to feel a little better and the illness controlled.
    I have all of your symptoms and i have been sick since 2004.Unfortunetly for some of us a diagnosis can take time.Just know we will support you.You may get a dx fast,so im sending you hugs.Sorry i carnt anser your other questions,but others will be here soon.You are not alone.

    Love Amanda.xxxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

  3. #3
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    Hello and Welcome Sir LupaLLot:
    While I cannot say that you do or do not have Lupus, I can say that all of your symptoms are symptoms related to Lupus and possibly one or two of the many co-existing diseases that we get along with Lupus.
    The chest pains could possibly be pleurisy and/or preicarditis (inflammation of the sac surrounding the lung and the heart - respectively). Both of these conditions are symptoms of Lupus and are treated with corticosteroids (usually Prednisone). Mouth sores (aka: Lupus ulcers or Lupus Lesions) are a very common Lupus symptoms (as well as skin rashes and hair loss) and they are usually treated with an anti-malarial drug known as Plaquenil. This is a cumulative drug and can take weeks before you see significant improvement. However, once it starts working, it usually works very well for those symptoms. It can also be beneficial for the fatigue. If it is prescribed with the Prednisone, you may see results a bit sooner.l
    The cognitive problems are whimsicaly known here as "Brain Fog" and almost every single of one of us have suffered from this. It can be due to Central Nervous System dysfunction due to Lupus or it can be due to the extreme debilitating fatigue do to Lupus. You doctor will have to do lab work to tell you if your CNS is not functioning properly. At any rate, there are many, many posts here where we relate our stories and offer suggestions on how to deal with Brain Fog.
    Sun sensitivity is one of the most common symptoms of Lupus and it is very, very important to avoid sun exposure. If you must be in the sun, make sure that you use a sun screen (minimum 35 SPF) that protects you from UVA and UVB rays. Wear lightweight clothing that covers your entire body, wear sunglasses with UVA/UVB protection and always wear a hat.
    The digestive and bowel problems could be due to Lupus or due to one of the most frequent co-existing diseases that we have, Fibromyalgia. The symptoms of this disease include TMJ, IBS, Muscle aches/burning, Sleep disturbances, migraines, debilitating fatigue, etc. It is quite common to find that Lupus sufferers also suffer from one or more other AI diseases (once you develop one auto-immune disease, you are more likely to develop other co-existing auto-immune diseases).
    Of course, the stiffness, inflammation, tingling, etc are definitely very common symptoms of Lupus.
    Once your lab results return, your doctor may have a better idea if you are or are not suffering from an auto-immune disease. He may run further tests to determine which AI disease you suffer from and the extent of that particular disease. Do not be surprised if this diagnostic process takes months and months before you get an answer and, for many, a solid answer is never received. However, you must insist that your symptoms be treated, weather or not you get a definitive answer, so that you can get some relief from your symptoms.
    Everyone here is here to help you as much as we can, to answer your questions, provide you with support and to make sure that you know that you are not alone!

    Welcome To Our Family!
    Peace and Blessings
    Look For The Good and Praise It!

  4. #4
    Join Date
    Dec 2008
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    hi sirlupalot,

    as you have already witnessed, you have found a home of caring and knowledgeable family members. We are a family here, and we all walk with each other as we travel the scary, confusing, and frustrating path associated with lupus.

    yes, you have a million questions right now, but i promise you that you will learn so much about lupus , and you will be able to assist your dr. in a diagnosis, and you will be able to contribute your opinion when the treatment options are being discussed. I was where you are, then i found this forum, and the wealth of information enabled me to become my best advocate.

    so, relax and sleep tight tonight, keep talking with us, and we will help you get through this.

    we have several guys here, and rob, one of the moderators, also has MS....i know he will be along very soon.

    I promise, your questions will be answered.

    welcome again....

    share a smile today

  5. #5
    Join Date
    May 2009
    Thanked 18 Times in 15 Posts


    I have been to 3 rheumatologists..only to get 3 different answers!! Luckily my Primary phys has his head on straight. I have the blood work to back up the Lupus DX but not everyone does.I was symptomatic for 5 years prior to being diagnosed finally do to the fact my blood work shows it now..not that my symptoms changed much. Hang in are probably in a bad flare right now. I must also tell you that my first flare was by far my worst!! None have been that bad since. The symptoms also vary greatly and you learn how to manage the differences. Always follow your instincts and do not listen to people who have no clue as to what they are talking Be strong.

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