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Thread: Frustrated (sorry this is so long)

  1. #1
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    Default Frustrated (sorry this is so long)

    After several years of weird symptoms that intensified over the last two years, I was finally referred to a neurologist. I was in the end of a flare and had called to get on the cancellation list. I was so frustrated that I literally walked in with a long list of all the symptoms and tests my GP had ordered. She asked if I had been in any stressful situations lately. She said, "I think you have a lot of stress and anxiety. Maybe your body is saying 'Enough! I can't do this any more!" Then she said, "But I wouldn't want to make a statement like that without doing a thorough investigation." When she left the room, I cried because I thought I had wasted my time seeing her. However, after all the tests (MRI, EEG, EMG, NCS, and many blood tests) she said, "I found a lot more than I wanted to find." She diagnosed me with multiple issues (severe cervical spinal stenosis, severe carpal tunnel in both hands, diabetes, small nerve fiber neuropathy, and Lupus, based on my symptoms and blood work (abnormal ANA, Anti-DS DNA and High C-reactive protein). She said my rheumatologist and GP would be managing my care, but she did immediately give me Gabapentin for my nerve pain. So...I went to my new GP. His reaction to the pages of bloodwork? "Well, it's a mixed bag of tests. A diagnosis of Lupus means being put on immunosuppressants. I want to do more blood tests before making that kind of diagnosis. The rheumatologist will want Titers." at this point, I didn't even want to talk to him at all. My rheumy appt. Is in April. My ANA level by then was elevated just enough for the rheumy to see me. I was so relieved to finally have an answer for why I had been suffering. Now I feel like I am in limbo.

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    Hi Nanaeagle! Sorry you have been having such a tough time with things! The type of symptoms we deal with especially before a diagnosis can be so frustrating and confusing because they mimic so many other diseases. But I am glad you got some answers! I would definitely see if you can get in the cancellation list for your rheumatologist. The sooner you see him and get a regimen started the better!
    Good luck and keep us posted! Feel better!
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Nanaeagle,

    This is a situation that often turns into "too much information", and it ends up being frustrating and overwhelming.

    I know it's a lot to take in at once. You're getting information from so many tests and so many specialists, it's hard to wrap your mind around it all. A definite diagnosis after many years of untreated symptoms can be such a relief-you finally have a name for what's causing your symptoms, and you begin to have a plan for fighting it. Then you get a result that contradicts previous results.

    I've read many people's accounts of this process, and there is something that stands out in your case. It sounds to me like you have a group of doctors and specialists who do listen to you, who are thorough, and who even read each other's reports. So many people pre-diagnosis are simply dismissed and told that they are just depressed, or that they "just need to lose some weight". But, in your case, it sounds like you have their attention and they are indeed taking you seriously. This is a very good (and rare) thing.

    Being in limbo is a bad place to be, but it sounds like you have a fairly decent group of professionals who are taking you seriously and are doing what they can to put the pieces of the puzzle together.

    A proper diagnosis one way or the other is a long process for most. Stick with it, and hang in there. The answers you need will come.

    Rob
    Last edited by rob; 01-28-2013 at 08:34 PM.

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    I agree with what's been said above...and am also sending you support through the ol' intertubes! ;-)

    It's great to have doctors who are thorough, even if it is frustrating. Part of the problem with these diseases is that they mimic the symptoms of so many OTHER diseases - often diagnosis is more a process of ruling things OUT than actually ever getting conclusive "proof" of Lupus (or whatever).

    I like that they are being cautious about putting you on immuno-suppressive drugs, even though I am sure it's frustrating. Those drugs are NOT something you want to be on unless you really, really have to - so an abundance of caution is not necessarily a bad thing. They can also interfere with some diagnostic tests, so maybe that is also why they are waiting. Hopefully in the meantime you are getting some relief from symptoms by taking other stuff...? Don't be shy about asking your docs for some relief while you wait. There should be SOME things you can do to improve your quality of life, even if it's only a routine of daily Aleve, or whatever your doc recommends.

    Then, if the diagnosis DOES come in April (or whenever), you can go on whatever drugs they recommend and not second-guess yourself as much if you have side-effects, etc. You'll know you and your docs really have arrived at a deeply-considered course of treatment, and it will (hopefully) be worth any risks associated with the drugs.

    Try to take it in stride - and always feel free to come here and vent!!!!

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    I also agree with everything that has been said in the posts above.Another thing to factor in that often is NOT considered by patients who are often in this situation is that often Drs are very wary of just slapping a label on your chart quickly.My GP,ER Dr and rheumy all knew something odd was going on but my Rheumy told me directly to my face that until he did further testing and saw what came up he did not want SLE on my chart ANYWHERE.He also said that he did not want to jump too quick and misdiagnose me with it and later find out he had been to quick to assume he knew it was Lupus and be wrong.Once it is on your chart anywhere you cannot get it taken back and it CAN and WILL affect your ability to acquire life insurance if you dont have that in place and often insurability later on.So often this accounts for hesitancy on the part of Drs also along with the limited and off label use meds that are required for immune suppression.
    SLE w/Sjogrens Overlap and Raynaud's diagnosed in 2007.Fibro in 2009.

    The Early Bird May Get The Worm But the Second Mouse Gets The Cheese.

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    First, Nanaeagle, I wanted to send you a virtual hug and tell you I'm sorry you're dealing with all this.

    Second, though, I wanted to say that Limbo is not always the worst place to be. I've been in a diagnostic limbo for two whole years now, but I am also being treated for autoimmune disease (which has been called UCTD, then someone else will say, you don't have UCTD because you've never had a positive ANA). Sometimes some of us have odd presentations of autoimmune disease that don't fit any one box, and the key is finding doctors who take you seriously enough to create a treatment plan just for you. For example, my cluster of symptoms (skin lesions, abnormal capillaries, low complement levels, tingling in hands, nerve pain in legs) led to my rheumatologist deciding to put me on Plaquenil, a first-line drug for autoimmune disease like lupus. It has helped, especially with my skin problems.

    So, I would advise to try not to stress having a name for what ails you. It takes time to get used to having your own personal Mystery Disease, but as long as you have a good team of physicians -- and it sounds like you do have careful, thoughtful doctors! -- you will likely be okay. And if they don't listen, get a second opinion. The first rheumatologist I went to said he couldn't see anything wrong with me, because I didn't have lupus or this disease or that disease. I left in tears, and then saw a second rheumatologist who took me seriously and put me on Plaquenil the next day-- a medication choice that has since been confirmed by rheumatologists at a teaching hospital.

    Anyhow. This is a bit rambling (it is early, and the coffee hasn't soaked in yet), but if you're in autoimmune limbo for a while, you're not alone. I'm here with ya!

    P.S. I have nerve pain, too, as I mentioned, and for me amitriptyline has been a miracle drug. So, if gbapentin doesn't work for you, there are a number of other drugs they can try. It took me a whole year to find the one that worked for me.

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    Thank you all for the support and wise words of experience. Believe me, I'm in no hurry to be on any new drugs or to have a Lupus label. Immunosuppressants with my full-time teaching career just do not compute in my mind. What I'd really like is to go to the rheumatologist and have her say, "This is something easy to fix." I've had three surgeries since Dec. 5th to remove discs in my neck and fix the carpal tunnel. Thankfully, this has alleviated some of my symptoms (did you know the nerves in your neck can affect your bladder?) The neurologist seems to think that the small fiber neuropathy is from Lupus because my diabetes is just above pre-diabetic. I just want to know what I need to do to make sure nothing gets damaged the meantime.

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