Expecting Diagnosis Soon - Waiting

Kittie_V

Hi everyone,

A little about my journey so far.....last summer I broke out in a rash after camping.  It wasn't itchy or sore just really odd.  It became more clear over time that the rash was in fact caused by the sun.  I went an seen a dermatologist who performed a biopsy which just came back as "unspecified inflammation".  It was really just left at that and as winter approached the rash disappeared.

Fast forward to this summer.  After a weekend of camping low and behold the rash came back but that wasn't all.  My ankles and legs started to become stiff every single morning making it hard to walk for the first bit of my morning.  I went back to my GP and knowing that these were both symptoms of lupus I asked him to rule it out.  He agreed and we did the ANA test - POSITIVE with low WBC.

So he immediately referred me to a rheumatologist who proceeded with doing all those extra fun blood tests.  That was on Tuesday. 

I received my results online this morning which read: Anti-dsDNA - POSITIVE; Anti-Sm - POSITIVE; Anti-SSA - POSITIVE.

At this point I am pretty confident that I am going to be diagnosed but I do not see my Rheumatologist for another three weeks.  This wait is going to kill me.

MY QUESTION: How do you deal with all the waiting?  How to do restrain yourself from Googling everything all the time? I don't want my anxiety to get the better of me so I need tips and making it through the next few month o

meyaeger

I can totally relate! I went for a second opinion (even though it means more money) and this doc really made me feel better—he was old and so thorough, even old fashioned (He put my foot on his leg with my shoe on it and pinched the skin on my legs, he turned out the lights and looked at nail part of my fingers with his flashlight shining through the back, he looked at my tongue and more). Unlike the first doc He said he did not want to be quick to give a diagnosis and that it could actually be a number of different auto immune things, and he ordered another blood test from a different laboratory, he stressed that, I can choose so long as it’s a different one, because he wants to see if we get the exact same results or not. I thought that was so interesting!

I have been looking for a book to track my symptoms and have gotten frustrated with spending money on stupid books, that I think are misleading. So I created my own workbook! I am a single mom of three and a schoolteacher and the last thing I want to do is sit down and take notes on feeling bad or things I think might be weird going on with me. So I created my own thing with pictures and I just color in or draw arrows on the body to show what I’m feeling, it’s super fast. I mention it in case it’s helpful to you too. It’s called “Keeping Track: a Journal-Workbook for Luging with Lupus.”

Meanwhile, how are you keeping track of your symptoms? Are you? Are you just relying on blood tests? I feel like I’ve become an expert in the last month! Get a second opinion!

Kittie_V

Thank meyaeger for the reply.

I just thought I would post a little update now that I have had my follow up appointment with my Rheumatologist.

Basically he said I have lots of auto-antibodies but because my physical symptoms are restricted to my skin and joints that I would "not qualify for research studies" so he cannot diagnose me with SLE. I am not even sure what that is suppose to mean.

He offered me Plaquenil but said it may not make any difference given my rash is fading with winter coming and my joint pains are bearable. So I opted out for now as I don't see much value in treating symptoms that don't affect my daily life to any extreme measures.

He says that if I have any new symptoms to "seek immediate medical attention". I asked him what those symptoms might be and he said "any new symptoms seek immediate medical attention". eye roll

So that is that until my follow up in May 2020 unless I get "any new symptoms" before then.