My story...so far
For the past three years my health has been sliding downhill and no one can tell me why. I feel like my life is going by and I'm not part of it!
When I first got sick it was just a regular cold...that turned into bronchitis...that turned into pneumonia...that turned into a sinus infection...that turned into chronic sinusitis. I was ill from September to April straight through. My brain fog was so severe that I had to take a leave from my graduate program.
I complained often of random joint pain, awful fatigue and constant migraines. My doctor tested my ANA and it came back positive 1:160. I was sent to a specialist who told me my problem was depression and that she had no help to offer. I sat in her office and cried when she left the room - that only made her more resolute in her diagnosis.
The following year I was barely moving I was so tired. Migraines kept me locked in my room in the dark. A trip to Cancun with my husband seemed to make everything much worse. On a sunny day touring the ruins, I felt so flu-like that I had to go back to the car and sleep. It was the start of the whole swine-flu thing, so everyone assumed that's what I had. When I got home I tested negative for that.
My doctor said he was concerned about Lupus. He did another ANA, this time it was 1:320. He sent me to another specialist (much nicer than the first). She ran the ENA panel and found no positives for anti-dsDNA, anti-Ro, anti-Sm. She diagnosed me with "fibromyalgia" even though muscle pain was not one of my symptoms! She said that I did not have an autoimmune disease and she could offer me no further help.
Fast forward to today. I still feel flu-like many days. I could sleep forever. My thyroid is excellent, but If I have a busy day or push myself a little too much, I pay it back with being sick for days. My migraines have calmed down, but now I have other weird things happening:
- my hair is falling out!
- I have 'pins and needles' feeling in my lower legs and feet (drives me crazy)
- my tongue is wearing a white-wool coat in the morning
- fatigue, fatigue, fatigue
- brain fog again (can't concentrate on my studies at all)
- sinus congestion
- light sensitivity (cannot stand florescent lights at all, sunglasses when outdoors)
- low ferritin, but not anemia (despite taking heaps of iron supplements)
I never wake up feeling well. I used to be an active person with a full life, and now all I do is sit on my couch watching Law and Order reruns. I have a history of depression, but it is well controlled. My mood is actually good and my doctor doesn't think my physical symptoms are at all related to my mental health.
My doctor repeated my ANA a few weeks ago, it is now 1:640. I have an appointment with another specialist (3rd one) next week to assess possibility of SLE. I have a bad feeling that my other antibody tests will come back negative again.
People in my life think I'm lazy. They don't understand why I'm not my old self. I am desperate for a diagnosis. I need a name to call this thing that has stolen my life. If not lupus, what else could it be?
If you've made it this far, thanks for reading and thanks for this space to vent.
Hi Harper! I want to welcome you again to WHL! Many of us have been where you are and we completely understand your frustration. You are NOT crazy nor are you lazy. I am going to keep this short because I said most of what I wanted to say in chat but I did want you to know that you are not alone. I am glad that you found us and feel free to vent here any time!
Hello Harper. Sorry you have been having a difficult time for such a long time. I have ni idea why some doctors assume that if you are tired, no energy, feeling miserable that you are depressed. I really don't like the idea that GPs can diagnose depression, this should be left up to the doctors that have actually been trained in mental health
I wish that we could have a world-wide round table with rheumatologists who just seem to be so totally unaware and uncaring. If we could get them in a room with us for a couple of hours so that they could hear, from us, just what suffering from an auto-immune condition feels like and what criteria are used to determine if we do, or do not, have one of these illnesses.
I am so sorry that you have been unable to find a rheumy who is willing to look at the complete picture in order to find out exactly what is going on with you and how to effectively treat it. You have been dismissed by two rheumys while your ANA continues to get worse. A high ANA is found in several other diseases that can cause some of the exact same symptoms as Lupus. So, just because the tests that indicate Lupus came back negative does not mean that you are not suffering from one of the 100+ auto-immune disorders or from one of the disorders that are not auto-immune, but are just as serious.
It is possible that you have Fibromyalgia, but it is also possible that you have this condition as an overlap illness with something else.
It is important to know that high ANAs are, indeed, found in patients who have auto-immune disorders. However, they are also found in patients with infections, some forms of cancer, lung disease, gastrointestinal diseases, hormonal diseases, blood diseases, skin diseases, in elderly people, or people with a family history of rheumatic disease. So, since there are so many other reasons for a high ANA, your rheumy SHOULD NOT have dismissed you just because your labs did not point to an auto-immune disorder. These other possible causes can be quite serious and should not be ignored.
When you see this third rheumy..you may want to insist that these other conditions be considered and that appropriate tests are run because you have a right to have an answer, to have treatment, and to have a doctor who is willing to work with you to help you regain some semblance of a normal life!
I wish you the very best and please let us know how your appointment goes.
Peace and Blessings
Welcome to WHL! There seem to be a large number of people who are sero-negative, but still have the very real symptoms of AI diseases. I hope that you can find a rheumy who will treat the symptoms, not just the blood work.
dear harper welcome to whl i am sorry for your treatment we have all experienced the same treatment from doctors at one point i to was told i was depressed and crazy and took my gp to look into lupus and finally get me the help i needed if you are not satisfied keep going and pushing to you get the answers you need after all it is your body and you are the one suffering good luck hugs kim l
I wanted to thank you all for the very warm welcome to this forum. I was concerned that perhaps I wouldn't fit in here because I don't have a diagnosis.
The past few days have been astoundingly bad from a fatigue/sleep point of view. Last night I fell asleep at about 8pm and slept through to morning. Now I've been up 3 hours, I'm ready for bed again.
Could I impose on your opinions regarding a more recent and frightening symptom I've been having?
I am having trouble finding words. In my mind, I know that the word is there, but no matter how hard I try, I can't access it. This morning, I wanted to google the word "twitch", as my husband was asking me why my fingers were twitching all the time when I was falling asleep. (never noticed it before he mentioned it!). I absolutely could not form the word 'twitch' in my mind. I was thinking that it was a short word that started with the letter "t". I stared blankly at my screen trying to figure out what to call this symptom (working around the word), like "fingers move involuntarily in a quick jerking motion"...
The past two days, this is happening to me all the time. Does anyone else have this??
I am looking forward to and dreading my appointment with the Internal Medicine Specialist this week. My ANA is too high to be disregarded. Along with my other symptoms, I know that something is wrong with me and I'm tired of being dismissed.
Thanks again for all of your supportive comments.
Yes Harper most of us have that. We have that and often times short term memory loss that we lovingly refer to as brainfog. There is a wonderful thread called "you know you have brainfog when" in Laurie's lounge. It is comforting while giving you a chuckle. You might enjoy reading it
Also, check out the thread called "speech coordination" by teresa40. A lot of us have been commenting on this very problem.
So glad you thought of that! I forgot but that is exactly what we are talking about there