Hi. Here is a brief family history: mom has Crohn's disease & my aunt on my mom's side has severe rheumatoid arthritis (so severe her wrists are now fused).
I had mono in first grade, & I was told by my PCP that that was an indicator that I would most likely develop an autoimmune condition. I have had severe cankersores since I was a child (at least ten at a time, never just one). I have frequent joint pain in my knees & ankles which sometimes swell. Two years ago, I had a 6 month problem with three of my fingers in which they swelled to the point I could not bend them, were red, & quite painful. Also two years ago, my big toe would no longer bend. It was not red, but just wouldn't bend. Three years ago, I was diagnosed with cellulitis in my ankle & foot. It was so bad that I was unable to walk, & doctor's thought that I had developed something terrible & were going to tap my ankle. Given prednisone & swelling quickly went down.
I am photosensitive, but not on my face. It generally occurs on my arms while I am outside or driving. In the past six weeks, I have lost about half of the hair on my scalp. (Told by my PCP that this was a result of stress because I had an appendectomy in Nov. which caused me to be in the hospital for a week.) I am consistently tired, & I have always required at least ten hours of sleep to be able to function properly. There are days in which I wake up and my body just hurts, & if someone touches me, it feels like I am bruised. (First rheumatologist diagnosed me with Fibromyalgia, second rheumatologist said it's definitely not fibromyalgia, but she never believed there was anything wrong with me, even though she saw at the time of my finger swelling.) In high school, I gave blood & had a false positive for HIV. All of my bloodwork has always come back negative (ANA, CRP, everything under the sun.)
I generally just never feel well. I have allergies, & I always have. Doctors are no longer believing/helping me.
Does anyone have any idea of what could be going on or if it could be Lupus that is ANA negative? I appreciate all of the help in advance!
You definitely have something autoimmune as the prednisone stopping your issues is a good indicator. Lupus can definitely be ANA negative. I'm in the same boat (was positive once but then negative) but my rheumatologist is treating me for Lupus. He is also treating me for fibromyalgia. There is a good chance you have both and that can cause issues where a doctor stops after the one diagnosis. It sounds like you are flaring as a result of your surgery.
You need to see a good rheumatologist and insist on a thorough work up and ask them to rule out Lupus. You know your body. I hope you can get some relief soon.
I am glad I ran accross your post. Can you tell me, does your red and painful fingers occur when you go from Cold to hot, or when you are cooking or using chemicals? I was recently diagnosed with Raynauds syndrome. My symptoms are very similar to yours overall.
My Blood work came back with strange results that my doctor calls negative. Just curious if you actually saw your blood testing results? And if they may be similar to mine...This might help both of us narrow it down.
Alpha-2 globulin =1.01 (H)
Immunoglobulin M (IGM) = 43 (L)
WEST Sedi rate) = 37 H
Urea Nitrogen (UN) = 6 (L)
C-Reactive Protein (CRP) = .9 (H)
I agree w/ Trudie. She gave you some very good advice. Fibromyalgia does not cause your joints to swell. That is a definite indicator that something is going on. I have a friend w/ RA. She said for many years her fingers would swell, but her labs were always negative. Since her fingers were never swollen when she had the rhemy appointment, the never believed her. So she went by the drs. office when her symptoms were flaring and insisted the dr. look at what was going on. She finally got a dx. It wasn't until years later that her RA and sed rate were elevated.
These autoimmune diseases are so very frustrating. I know that sun exposure can make your ANA be elevated if you have lupus. I was having trouble getting a dx until I spent time in the sun prior to my dr. visit.
It is not uncommon for people to have fibromyalgia and another autoimmune disease. I have found several triggers to lupus. Stress being the main one, sun exposure and cokes.
Another test I recommend is vit D. Most AI patients are deficient.
Keeping a positive attitude goes a long way, as well as prayer and Scripture reading. These things are tough to go through, but faith in God can carry us.
A disease of the immune system, such as systemic lupus erythematosus or rheumatoid arthritis.
Cancer, such as leukemia, lymphoma, or multiple myeloma.
What Affects the Test
Reasons you may not be able to have the test or why the results may not be helpful include:
High levels of lipids (hyperlipidemia).
Iron deficiency anemia.
Medicines, such as corticosteroids, birth control pills, aspirin, bicarbonates, chlorpromazine, neomycin, isoniazid, and sulfonamides (sulfa).
Medicine used to treat cancer (chemotherapy).
copied from webMD*
Immunoglobulin M (IGM) - I couldn;t find anything substantial on this.
Of coarse the elvated sed rate and the CRP are indicators of inflamation.
Low Urea Nitrogen:
May be due to poor diet, malabsorption, or liver damage. (your level was not significantly low.)
~Have you been nauseous? Or had your gall bladder taken out?
I know you said you have Raynauds. Do you have any other symptoms? Why was your dr. checking these values?
Hello I came accross this. I thought I'd share. My 2 year old at the time, had many symptoms, that I didn't put together for a long time. He had been to the er, dr's office many times. Had lots of bloodwork, urine, spinal tap tests.
In the end we found out he was allergic to milk, has a reaction 4 hours later. We tried going dairy free, out of desperation. I honestly did not think it would work. I never ever thought food can cause so much problems. With him, when he does have a reaction 4 hours later, it comes in severe joint pain. He can't walk, stretch out his legs, barley sit up to even have a drink of water. It all amazingly stoped about 3 days after going completly dairy free. We have to be SUPER STRICT and make sure anything he has is 100% dairy free or it doesn't work. He has a reaction to anything with a HINT of dairy. When your desperate enough like we were, it is at least worth a weeks try to see if you have any results. And is a remedy that could at least be tried at home, and if it doesn't work, it was worth the try. If not, I would keep a food log, with time of eaten foods, and reactions and what time, see if anything comes up. Just a suggestion, it worked for us. I could not believe I found the CURE to everything, and was not just treating all of his symptoms. Hope all goes well. ;)
I forgot to mention, I've also came accross reading about milk being invovlved in Chrone's disease too. If your curious, I'm sure if you google it, it may give you answer's your looking for, or at least inform you.
And for the whole family benifting, my kids DO NOT get sick anymore! No fevers, no sinus infections, no ear infections, no colds, just a few runny noses for a couple of days, no headaches or migrains. My husband was depended on perscription strength omeprozol 2X a day. All coincidently gone going dairy free. Which all were a constant battle in my house. But the best heartfelt thing there is, is not seeing my little guy in pain, and not being able to help him. That was the worst feeling in the world, not to mention so many sleepless nights.
I had not looked into Raynaud's until right now; it was not something my doctor ever mentioned. I looked into rather quickly, but I have never had any blue skin coloration, only red. I'm going to do some more research & see what I can come up with. Thanks for the tip!
I have looked into Behcet's, but my rheumatologist said that because I have never had genital ulcers, it's probably not Behcet's. I have had some cases of folliculitis (dx by myself), but I'm not sure. I'm struggling to figure out what's going on. Thanks for the input.
As a note, I have had a Crohn's panel done, & again, nothing. I recently had an endoscopy done & found that I have a large duodenal ulcer & gastritis (although I did have an appendectomy in Nov. & spent a week in the hospital). I have noticed that I oftentimes don't feel well after I have a lot of dairy. I always just assumed I was a little bit lactose intolerant. I'm going to keep doing research & try to figure out what is going on. Thanks!
I just wanted to chime in and say I agree with what TrudieC and karajo said.
I've had an autoimmune disease brewing for a long time at very least 16 years since my original diagnosis. I was originally diagnosed at 17 yrs old with rheumatoid arthritis b/c of a the joint pain and inflammation though my bloodwork was negative. However after 10 years and the addition of many more symptoms. The rheumatologist I saw told me it was not RA b/c I didn't have the joint damage RA would show after this time. He scooted me out the door reassuring me whatever I had was certainly not that bad since my blood work did not indicate it. I realize now I think he didn't mean to be so hurtful but they just don't know what to do with folks whose bloodwork does not reflect what they are claiming is going on with their bodies. Now 6 years later my ana is 1 :1280. Just to show you that your bloodwork will likely change with time. I used healthgrades.com to find a rheumatologist others recommended in my area.
I have also been diagnosed with Fibro and recently with an autoimmune thyroid disorder. I have been searching for answers for over 20 years and had the same issues as you with blood tests coming back negative but living with a host of autoimmune symptoms. I share most of your symptoms and have seen too many Dr's and specialists to mention, autoimmune disorders are frustrating to say the least!!
As others have said, it seems once you have an autoimmune condition you are prone to getting others so the searching and the myriad of symptoms just never seem to end.
So far I have been dx with Fibro, CFS, IBS, Autoimmune Thyroiditis, Alopecia, Food & Environmental allergies, Chronic Stress Immune Disorder (or Gulf War Syndrome).
I always thought I had Lupus but ANA negative so Rheumy ruled it out but I am not convinced as apparently this test can come back negative one month and positive another. As if all of this isn't hard enough to try and deal with! I will be testing ANA again and will take the advice of karajo and get sun exposure prior to the test. *Thanks for that tip karajo*
I share your pain with the hair loss, that symptom is just horrid. I have always needed to sleep for 10 hours but still feel tired and wrecked when I wake. I have photophobia and also not on my face but everywhere else exposed and happens with 10 mins of direct sunlight (summer in Australia). Joint pain, swollen, painful fingers, aching muscles, tired, run down and feel *blah* most of the time. Worsening allergies, hives, rashes, I spend an absolute fortune on antihistamines! Stopped working 2 years ago as I was having more time off on sick leave than I was able to work. I also have days when my body just *hurts* and I cant stand to be touched, my hearing elevates and every noise drives me crazy. I feel hypo sensitive to everything. Simple chores like grocery shopping require a huge effort if I cant pick the day I go. I have to live my life day by day as I never know how I will be feeling or what wonderful new symptom may decide to pop its head up.
My most recent diagnosis, by 2nd Endocrinologist is Autoimmune Thyroiditis due to TPO antibodies, symptoms and low end range FT4. Started on Oroxine medication (T4 replacement) about 6 weeks ago and waiting to see if it helps. He stated this may be a cause of my hair loss, it may not and it will take at least 3 months for any results so I just have to wait and see. Gosh, always seem to be waiting for a test result, a specialist appt, a scan, blood tests, for medications to work....uggghhh!
Probably not of much help to you but sharing our stories can sometimes help to get some insights. I hope you find some answers soon and if you want to chat further just message me. Take care and good luck!
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