Hi Looking for answers and still waiting full diagnosis

Hi Looking for answers and still waiting full diagnosis

I have been sick for a few years now, started with Migraines, then rapid heart rate, then joint pains, nausea, dizziness, 4 years ago was rushed in for emergency blood transfusion, i had been having monthly blood tests for approx a year prior to this, as my platelets were high as were my inflammatory markers. and since that first transfusion, i have been having them ever since, more or less on a monthly basis, then tried some surgery to stop what they thought was causing bleeding. (even though i have never seen any sign of blood) but that failed so between transfusions and iron infusions as tablets don't seem to work is basically part of my life now. i then got diagnosed with Epilepsy within 2 areas of my brain and hot on the heels to that was hypothyroidism caused by Autoimmune disease and Sjogren's syndrome another autoimmune disease and also told i had chronic kidney disease. So was packed off to see a Rheumatologist as on top of all of this my joint on my hands a quickly becoming disjointed and very painful as are my knees lower back and neck,

After an intense visit and numerous tests, he said i had fibromyalgia as well as all above, and Arthritis but i had also had a "Slight" positive test for Lupus!????

Which i believe is another autoimmune disease, and reading about it and all the symptoms and complications seem to match all the above.

So here are my questions and i hope someone can help me not feel crazy. Have any of you had all this hassle before you were diagnosed? Can these things happen like the "domino" effect it seems to have done with me? How can you have a "Slight Positive" test surely you are or your not? And finally, i did use to love the sun, but now it's not so much needing to be in the shade because of lesions it's the light i can't stand! although I'm no longer allowed to drive, even as a passenger i can't stand it, and have to stop because it can make me so nauseated or trigger a migraine. but yes i do get lesions which twice have been mistaken for shingles, but i also can't abide the heat.

So please let me know your stories, do you have a number of autoimmune disease/syndromes or just lupus. or is it lupus that causes the others.

6 Replies

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  • I have nephrotic lupus (meaning it's attacked my kidneys) and have found sunlight to be a trigger for headaches and fatigue. It's frustrating, as I love the sun - GREATLY, but do not love what it now does to me.

    I can't answer to anything else in your post, but I can definitely relate to the sun troubles.

  • I'm still going through it no you are not crazy, what test gave the lupus result

  • Hi Sheilam1,

    I am sorry to hear you have been having a tough time trying to get a full diagnosis.

    Yes, lupus is an autoimmune disease that can affect any part of the body.

    Joint/muscular aches and pains are one of the most common symptoms associated with lupus. Light sensitivity as well as headaches and migraines are frequently seen; it is rare to find two people with lupus to have the exact same symptoms. To find out more information on lupus click on the link to download or request a free information pack: lupusuk.org.uk/request-info...

    Also, we published a factsheet on ‘LUPUS: and Light Sensitivity’ which I hope will be of help to you: lupusuk.org.uk/wp-content/u...

    As lupus presents differently in everybody the time spent on diagnosing the condition can vary from person to person. Certainlu there are a lot of people who do experience a significant delay in getting diagnosed, as you will hear from other members of this community. Lupus often occurs along with other conditions such as Sjögren’s syndrome, fibromyalgia or antiphospholipid syndrome. However, lupus is by no means the cause for these associated conditions. To find out read our factsheet on ‘LUPUS: and Associated Conditions’ here: lupusuk.org.uk/wp-content/u...

    Have you been started on any treatments? Keep us updated on how you are getting along.

  • Hi dear... a lot of your story sounds familiar to me. Well, if you are crazy then I must be too. ;) getting a lupus diagnosis took me years, until a very bad flare that hurt my kidneys and I didn't stop for months pushing for test after test. I always forget if its name is "lupus nephritis" or "nephritis lupus", but that is what I have LOL.

    Just out of curiosity, are you treated for epilepsy/migraines? Some years ago I was having migraines every day, I tried many things but as I remember some meds are used to cope with pain in other diseases. Gabapentin and topiramate come to my mind.... talk to your Dr and see if he can offer you something like these meds, that can help you with more than one issue.

    I'm not a doctor and only a trained specialist should evaluate your medical history as a whole. Autoimmune diseases have the bad habit of affecting our bodies in more than one point. I read many times about the link between Sjogren's, hypothyroidism and many others, you are definitively not alone :) best of luck!

    healthunlocked.com/hughes-s...

  • Thanks to all for your replies and will certainly read the links provided. I have had developments. My latest ANA test has come back positive again so i am seeing the rheumatologist again so they can sort out my treatment for Lupus, so at least i really do know I'm not going crazy and was actually right when i told them for years i felt like they weren't listening to me and they were missing something, no one could possibly be so unlucky to have so many things wrong with them and it not be something that was causing them! The sad thing was the day before i got the phone call telling me i had this positive test again for lupus. i was having a Uterine biopsy because i have had a bit of bleeding and pain after the menopause, i thought i was just going to have a quick check up and a ultrasound. but they found the lining in the uterus to thick so had to go though and extremely painful biopsy TWICE. only to be sat down and told that they thought that it could well be cancer, with that and the Lupus i have to say i have had better weeks! but here's the thing, i found an article linking lupus with uterine cancer, but cant really find much more on it. does anyone know of anywhere on the web about it that you could guide me to, also how does lupus affect your lives? I've read about the blood thing, which has answered a huge question for me and now i understand why i have to have blood transfusions every month oh and god so much stuff, please share your stories, it is beginning to fascinate me how the medical profession can misdiagnose this repeatedly

  • hi, i was trying to get the right diagnosis. at first they kept testing me for lupis. each dr. when they called and said its RA, i jumped for joy cause i didnt want lupus. but now im starting to think ... they just labeled me to end it. i could still have lupus because RA, the look of it in the hands. i dont have that. i do use my hands alot every day. knitting and carving wood. i cant believe its ra. i cannot tolerate any kind of heat. even the heat of menopause. man alive!!! i get bad flair ups to where i just cant move. so i just am confused. i get to see my own rheumatologist in sep 2017, because i hadnt been seen in 3 yrs they said i am a new client. oh well. here we go again. aggg

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