Autoimmune Disorders :: How Did You Discover? Prior Symptoms?
Mar 10, 2015
How did you discover that you had a autoimmune disease? What were your symptoms prior?
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Mar 10, 2015
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Autoimmune Disorders :: Vitamin D3
I am male and so likely have had less severe autoimmune manifestations than females since they seem to have stronger immune responses. However, I have had some difficult times with autoimmunity. It started in 1972 with antiphospholipid antibody syndrome which caused deep vein thromboses in both legs. I started taking coumadin at this time but the dosage was not high enough to prevent some further clotting and a number of the clots travelled to my lungs causing pulmonary hypertension. Eventually, in 1994, this became severe enough to cause heart failure and the clots were removed via a pulmonary thrombo-endarterectomy. Subsequent to this, I developed lupus symptoms and lost both my adrenals and thyroid to it. The other lupus manifestation was regular pleurisy attacks. Also by this time, despite the coumadin, I was getting regular small blood clots on the skin on my feet and ankles, many of which subsequently turned into painful ulcers. In 2006, after reading an article on the internet by a doctor in charge of a hospital ward who was giving his patients 5000 units of vitamin D3 to prevent them getting sick, my wife and I started taking 5000 units of D3 ourselves hoping to avoid colds and flus. The vitamin D3 worked in stopping the colds but, in my case, it had another even better effect. The blood clots on my feet stopped and I have had none since.
In addition the pleurisy attacks almost ceased. With some additional experimentation, I found 10000 units of vitamin D daily (in split doses morning and evening, stopped the pleurisy attacks altogether. I remain free of the autoimmune effects since I started on the higher D3 dosage. I discussed the dosage with my hematologist and he felt up to 15000 units a day should present no problems in causing calcium over-retention (stones). I would recommend to anyone with auto-immune problems to try at least 5000 units a day of vitamin D3 to see if it reduces autoimmune problems. If you are concerned, you can discuss it with a doctor first but I have been taking 10000 units a day for several years now with no ill effects.
Autoimmune Disorders :: Muscle Weakness
I am a 29 year old female and I was diagnosed with Hashimoto's Thyroiditis at the start of the year. I have been having problems with my right eyelid in that over the course of the day it progressively becomes droopy and the only thing that relieves it is when I close it. When it becomes droopy it makes my eye feel like there's something in it and I end up rubbing it. It's only when I look in the mirror that it's droopy.
In January my endocrinologist ran an autoimmune profile (but not for every single antibody) and rheumatoid factor and these are the results of it:
Rheumatoid Factor - 9IU/mL (<20 negative)
HEP2 - Positive
Type - Speckled
Anti-DSDNA - 7IU/mL (<30 negative)
(Positive antinuclear antibodies but no significant disease association found)
ENA screen - Negative
Autoimmune profile
Antinuclear Abs - Positive
Anti-Smooth muscle Abs - Negative
Anti-Parietal Abs - Negative
Anti-Mitochondrial Abs - Negative
Anti-LKM Abs - Negative
Anti-Thyroid Peroxidase Abs (Anti-TPO) - 141 kIU/L (<34 negative)
I am posting here because I have a suspicion that I have Myasthenia Gravis. Not only have I got the problem with my eyelid but I tried to follow some physical tests for muscle weakness such as holding my arms out straight in front of me and deep knee bends.The results of these home tests I did:
Holding out arms stretched in front for 60 seconds - pain in both arms when it came up to the 60 seconds and left arm dropped slightly
10 deep knee bends - did all 10 knee bends but the last 3 made my legs feel weak and shaky
5 sit-ups (sitting from lying down) - could only manage 4 sit-ups
I have an appointment with my GP on Friday and since this has now appeared I'd like to mention my concerns to them.
My main concerns are :
Wouldn't my endocrinologist have tested me for Myasthenia Gravis if it's an autoimmune condition? If so what antibodies would she have tested and would any of the ones I had tested have shown I have Myasthenia Gravis?
Who do I need to request to see to get a confirmed diagnosis?
If it is indeed Myasthenia Gravis would it be because my current autoimmune condition made it worse? I have read that this is possible and I became very hypothyroid yesterday as I had very bad Reynaud's flares when out and about.
Autoimmune Disorders :: Do Your ANA Patterns Change?
So now I feel like a complete hypochondriac. Ladybud (who is fabulous, btw) has helped me tremendously. I am wondering if any of you have had your ANA patterns change. I am having muscle aches, dx with small fiber neuropathy and Raynaud’s, my RBCs and C-reactive protein have been low throughout the last 3 years. I now have been dx with a reactivation of the Epstein Barr virus and alopecia due to “granulomatous Dermatitis” (getting 2nd opinion later this month).
These are my titers and patterns over the years:
10/2011 ANA Titer: 1:320 Pattern: Homogeneous
11/2011 ANA Titer: 1:320 Pattern: Homogeneous
10/2013 ANA Titer: 1:320 Pattern: Homogeneous
5/2014 ANA Titer: 1:160 Pattern: Homogeneous
AND NOW:
6/2014 (AVISE SLE 2.0 TESTING (1st time with this test) ANA Titer: 1:80 Pattern: Diffuse fine speckled
Negative on all markers. I am HLA-B27 Positive, but negative for ankylosing spondylitis (AS).
Now my rheumatologist stated all my blood work appears to be normal and I have ZERO autoimmune positivity.
Huh? I feel like such a hypochondriac.
Iron Deficiency With Several Autoimmune Disorders?
I've just heard from my GPS surgery that my most recent blood test shows I have virtually no iron! As I have several autoimmune diseases including autoimmune hepatitis, rheumatoid arthritis, SLE (lupus), Raynauds, Sjogrens, acquired autoimmune hypothyroidism) , I'm rather afraid that this could be pernicious anaemia or hemolytic anaemia, as I've never had a low iron level until now. I was taken off methotrexate due to respiratory problems (side effect) and am on prednisone 25mg/day. Does anyone have any experience of sudden iron deficiency please?
View 4 RepliesAutoimmune Disorders :: Positive ANA And Anti-SSA/Ro
I was diagnosed with fibromyalgia years ago due to constant and sometimes debilitating muscle and joint pain. I am seeing a new PCP and she ordered some blood tests. The first was just a general screening but my c-reactive protein came back as elevated (also my platelets) so the doc ordered an ANA with reflex if positive. ANA came back positive (no titer information - it was just a positive/negative test I guess) and anti-SSA came back at 8.0 (negative range is 0.0 to 0.9). But RA factor, anti-centromere B antibodies, anti-dna (ds) qn, anti-jo-1, anti chromatin, anti scleroderma-70, rnp, anti-SSB, and smith antibodies are all normal.
Besides my muscle and joint pain I have had periods of alopecia (losing quarter to half-dollar sized patches of hair on my head), full-body rashes during especially hot times, asthma, and suspected endometriosis (currently controlled by depo-provera). I also used to never get sunburnt but my face especially gets really red now if I am in the sun for more than a little while. I have darker skin so its sometimes hard to see but lately my cheeks and nose seem constantly flushed.
All of these symptoms have been spaced out and gradual so I never thought anything of each individual symptom. The alcopecia was blamed on "stress" when I went to the doctor for it. The rashes I blamed on a simple "heat rash". My pain was diagnosed at first as carpal tunnel and then as fibromyalgia. But now with the ANA and anti-SSA tests I am thinking it all may be related. But I don't know and my doctor is out of town, and although I know she will refer me to a rheumatologist now as we have talked about that, who knows when I will actually be able to see the rheumatologist. So any thoughts would be greatly appreciated. I am thinking maybe SLE (lupus) but with only that one anti-SSA and none of the others I don't know. Also I do have flares 2-3 times a month where my pain gets much worse but it constantly hurts and aches the rest of the time regardless, which doesn't seem like typical lupus. Oh and I also had severe fatigue until my doc put me on Savella which helped with the fatigue but not the pain. So now I am on gabapentin also but it doesn't seem to help too much either.
I would do almost anything just to be pain-free for even just a day. I am hoping with the ANA results now the doctors will not only maybe be better able to treat me but also will take my pain seriously.
Autoimmune Disorders :: Positive ANA's Just Mean Inflammation
I was just told by an opthamologist I saw ystrdy for a new patient visit, that my blood work that's been coming up positive for ANA since 2012 just means there's inflammation in my body. Not an autoimmune disorder.
last week a vessel broke in my right eye and it felt weird under the lid. It disappeared the next morning. Then I noticed one a few days later in opposite eye in the morning putting on my mascara, So my husband told me I MUST see an eye dr.
I brought copies of my labs and said that I'm referred to see a rheumy dr.because of positive ANA's.
I had to write down my whole history upon a first patient visit so he knows I have osteoarthritis throughout my body in different parts.
BUT, I didn't mention the strange rashes and how I just out of the blue mopping a floor tore and blew out 60% of my knee meniscus and needed surgery. The right knee feels like something is growing in it. and it clicks when I go down the stairs as if it's catching on something. so when I saw my family dr. for my knees, he only ck'd out the injured one and said he doesn't think it's rheumatoid arthritis but thinks it may be lupus, and referred me to see a rheumy dr. but I can't get in right away. I had to wait 3 months, but the day I went my car didn't start which wound up being a dead battery. I called the office and told them what happened and they couldn't put me in for ANOTHER 3 months. so I'm now waiting almost 6 months to see this so called excellent dr.
I get strange pulls and inflammation in muscles or tissues, like out of the clear blue sky I had pain that radiated down the right side of my buttock and it got to the point where it ached all the time. My rheumy dr. who no longer is in practice, sent me for MRI and it wound up being the psoas muscle. I had to see a radiologist in my local hospt. to get a special injection put thru the hip to get to the psoas. IT HURT LIKE you know what!!!! next day too.
never had it come back. How on earth did I pull my psoas?? the largest muscle in the body. it keeps you from falling off your chair.
My left hip hurts so bad at night that it wakes me up and an old mri says there's a sprain in it??? plus arthritis.
I also have had raynauds syndrome which started during my divorce in 1998. plus numbness in hands, arms, fingers at night and even the scalp.
keep losing hair and breaking off at the edge of my scalp and going bald on sides of head. I have osteoporosis diagnosed many years ago which I refuse to take medication for cause of side effects. I just take calcium.
the list goes on. I used to have a lot of pain everywhere and was diagnosed with fibromyalgia back in 2004. but I don't get those symptoms any more like I used to. so did I actually have it or not? wouldn't I still have the symptoms?
My c-reactive protein level was positive one time only. but the ANA started in 2012 till now. I get blood work done each year.
So Is it just inflammation because of my osteoarthritis? do all people with osteoarthritis have positive ANA tests?
The opthamologist made me feel like I shouldn't even bother going to the rheumy dr.
am I just making a big deal out of nothing?
Autoimmune Disorders :: Adrenal Stress Test
I was diagnosed Hashimotos this year.
Here are my adrenal stress test results:
Sample 1 - 3.4 (12-22)
Sample 2 - 6.1 (5.0-9.0)
Sample 3 - 4.8 (3.0-7.0)
Sample 4 - 3.2 (1.0-3.0)
DHEA:Cortisol Ratio - 2.62 (within range)
Latest thyroid function test results:
TSH - 2.50 (0.2-4.2)
Free T3 - 4.6 (3.9-6.7)
Free T4 - 15.7 (12-22)
Apparently my doctor says these are normal, yet when I am taking the Levothyroxine my Free T3 drops and my hypothyroid symptoms return. Am I missing something or am I the only one in the world with this problem? I presume the latter.
I am currently dairy and gluten free and my fatigue and constipation have cleared up since on the diet, however I retook my Levothyroxine and within 2 hours I was constipated. The only change I had made was retaking the Levothyroxine but I did increase my fluid intake, too. The reaction I had from the medication is making me doubt the benefits of it. Or could I be undermedicated at 125mcg? The nurse taking my blood last time said 125mcg is a lot for a little person like me to be taking!
So, in order to wipe the slate clean and start afresh with my care, I have since changed doctors and will be asking for the following at my first appointment:
Sex hormone profile - not just the testosterone, FSH, LH and prolactin my endocrinologist carried out but I would like to include the ones she has *missed* - the oestrogen, estradiol and progesterone. I am sure there are others in there...
Full mineral/vitamin profile - but excluding the folate, Vitamin D and Vitamin B12 which were done recently and including a full iron panel.
Repeat thyroid test - why oh why am I experiencing hypothyroid symptoms AFTER I take the Levothyroxine? When I reported this to my previous doctor they have told me they will end my script for Levothyroxine since they are under the impression I get no ill effects without the medication! Are they right?
Autoimmune Disorders :: Hearing Rapidly Declining
Wonder if anyone has been diagnosed with AIHL and finding treatment unsuccessful? I'm on immunosuppressants but now steroids because of extreme flare up and hearing rapidly declining, steroids now too.
View 2 RepliesAutoimmune Disorders :: Psoriatic Arthritis And Sjogren's
I have psoriatic arthritis and sjogrens. I take methotrexate injections weekly and remicade infusions monthly. I still am having pain and swelling in between all of this. Does anyone else experience a lot of pain?
View 5 RepliesAutoimmune Disorders :: Hair Loss - Diagnosed With MTCD
I was diagnosed with MTCD 2 years ago. My case is lupus and they don't know what else. My case is mild. I really don't have much pain but I can feel something is there. Over this past year, 2013, I noticed my hairline is receding and now the whole top of my head is thinning. I always had a really beautiful thick head of hair and took great care of it. I keep it short but kind of spiky. Always looked good. But now as I stated my hair is thinning so much you can see my scalp. Just wanted to know if this is happening to anyone else. I am currently taking plaquenil, prednisone, cymbalta and imuran. Very low does. My doctor told me to cut down on the prednisone but after 4 days without it, I felt bad. I visited my dermatologist last year for a scalp biopsy but he said I didn't need it and I agreed. No thyroid problem yet but my numbers keep getting high. I'm thinking it's all of the above but don't know what to do about it. Any suggestions besides a wig?
View 1 RepliesAutoimmune Disorders :: Tired Of Being Sick And Tired
I have been having joint pain, general body pain, fatigue, depression and anxiety for years. I was dx with fibro about 3 years ago. It was first suspected almost 20 years ago. My mouth and eyes are painfully dry. My lips constantly crack. I recently had a PAP done and the GYN remarked how dry my vagina was (I'm not sexually active so I never noticed).
I recently saw a rheumatologist here in the State (I had previously seen one in Korea). She did a bunch of blood work. My Vit D was 28 (reference range was 30-70). RF, ANA were negative. CRP not done, but has been elevated in the past (multiple draws over a two year period, but none in the last year). ESR was 58 and has been elevated for 20 years (I went through a lot of blood work in high school and nothing was ever found, but it was with ID, not Rheum).
Rheum was next to useless. She said the sed rate wasn't relevant and that there was no need to worry about the Vit D (which was lower in the past) even though I was taking 2000 IU a day.
After talking to my GP, he had me increase the D supplement to 4000 IU/day. He also wrote me a new referral to a different rheum. This one specializes in seronegative arthritis.
I try to be an informed consumer. Current rheum just wants to throw more pills at the issue without getting to the root of it. It seems like if I go in with a fibro dx, everything must be fibro. How do I approach this new appointment (in September!!) to finally figure things out? This new doctor will be in the UH system as are all my other docs. I think she'll have access to previous lab results, if not I can pull them up in my EMR.
I could use words of wisdom, advice, a kick in the butt (if necessary), etc.
Inner Ear Disorders :: Perilymph Fistula - Similar Symptoms To Meniere's
I am diagnosed Meniere's but suspecting that I may have Perilymph Fistula....very similar symptoms to Meniere's but cause by trauma-induced leakage of the inner ear.
View 2 RepliesNeurological Disorders :: Progressive Symptoms Of Numbness And Muscle Weakness
For the past 3 months I have had progressive symptoms of numbness and muscle weakness all over my body. It all started with sciatic pain that radiated down my legs and prevented me from sleeping. That went away. Then about a week later my hands and feet started to have a pins and needles and loss of sensation feeling. a week after that my neck became very stiff and sore. After that my muscles became very tight and inflexible. After that I developed a tremor in my hands when I go to do something requiring hand focus like writing pointing or typing. after that the loss of sensation in my feet progressed up my leg and now I have leg weakness which prevents me from running and jumping and my balance is very unsteady. lasty my face muscles are weak I cant fully smile or use my muscles and I cant raise my eyebrows at all Every week or so since i've had a new symptom. and I am very alarmed at this point . I don't have any diseases or conditions now im 23 in good shape work out.
View 1 RepliesCould I Have Ovulated During My Period Or The Days Prior?
I had sex twice this week. Two days before my period ended and four days later and he came inside me the first time and close to the second time. My question is if I could be pregnant even though my menstrual cycles tend to be very long, from 31 to 38 days? It's been already a year like that. Could I have ovulated during my period or the days prior? What are the odds?
View 1 RepliesSame Pain I Had Prior To Bladder Bowel Surgery
two years ago I had a partial hysterectomy and 10 days post op I had to have a vaginal cuff repair and 5 units of blood.Two weeks after that I started having issues with my bladder and not being able to void without using a straight cath. I then had my bladder stuck on my bowel and had to have surgery. Now here I am having the exact same pain that I had prior to the bladder/bowel surgery,and my gyn says it is just cysts on my ovaries.
View 1 RepliesPolycystic Ovary Syndrome :: Prior And After Pregnancy?
A few months before I eventually got pregnant, I was diagnosed with polycystic ovaries after having an infernal scan. When I was pregnant, I will admit, I forgot about PCOS. My first period post pregnancy arrived when my son was 9 months and it lasted about 12 hours in total. My next period was a good 6-7 weeks after that, lasting about a week, then I had a period about 3-4 weeks after that lasting 7-10 days and then I had another 2 weeks after that. It has triggered, could this be PCOS? Should I see my doctor about the irregular periods or should I be expecting this after having a baby? I didn't know if PCOS could disappear whilst being pregnant?
View 1 RepliesHerpes Symptom :: Painless Scabs With No Prior Lesions?
Background:
Had sex with a girl and used condom for about 95% of the time. A week later I have sex with the same girl, except this time I did not use any condom nor lubricant. We had very vigorous, dry sex and she gave me a pretty aggressive blowjob. The next morning, I woke up with about three scabs on my penis. One was on the left side of my head (I'm uncircumcised) and was about 6 mm in diameter. The other two were on the right side of my foreskin and smaller. In between these two sexual encounters, I did not experience any pain nor lesions nor unusual red marks. Moreover, the scabs were completely painless and therefore, I picked them without the slightest feeling. When I picked them, there was no liquid or blood. After thorough research online, I'm about 99% sure that those scabs, which don't look anything like the herpes scabs I've seen online, are the result of dry, vigorous sex; however, the hypochondriac in me won't leave it alone.
Metronidazole :: Prior To Tooth Extraction - Side Effects - Headache/migraine, Itching/sore Skin
I was prescribed a 3 day course for a possible dental infection I have, prior to having the tooth extracted. The side effects I am experiencing are tremendous, I have headache/migraine, itching/sore skin, vomiting, diarrhoea... Stopped taking them but only have 1 in the course left. How long do they last?
View 1 RepliesOraquick Home Test - Few Sips Of Water Prior To Test
I have a question I took a oral swab home test today 5 year post exposure condom broke. The exposure was anal sex. My question is i had a few sips of water prior to the test due to dry mouth is my negative result false or not conclusive?
View 3 RepliesDo Parasites Cause Autoimmune Diseases?
I have recently completed 2 stool sample tests that have rendered the same outcome, positive for parasitic organisms but unable to identify. Now I have to complete the exam a third time. I have still not received any treatment and have experienced some serious health problems over the past few years, including an idiopathic cardiomyopathy a little over 2 years ago. Two years before this I was hospitalized for a serious virus that could not be identified. This involved a very high fever, diarrhea, vomiting, and the start of kidney failure, however I went to the emergency room at the right time. One month later, I had mono, then 4 months later, had a palsy in my left foot, then less than one year after, started experiencing chest pain, serious headaches, and extreme fatigue. The emergency room kept sending me home telling me it was a virus. Finally several months had passed after numerous visits to this ER, I went to a different hospital where they found a cardiomyopathy. My ejection fraction was 35%. I am only 37! Just after this, I noticed one day that I had experienced severe itching in the rectal area with several days of white discharge that had an odor of infection. I waited for a couple of months to see if things would get better, and they didn't, so I went to the ER. I told the doctor about the cardiomyopathy and previous mysterious illnesses, he completed a brief rectal exam, and said it was probably internal hemorrhoids. I asked if a parasitic infection was possible, and he said it was very unlikely because I hadn't been out of the country in several years. So he never tested my stool. Two years have passed, and I have had the same/similar problems since, and have reported this to the doctors over and over. For the past year and a half, I have developed new symptoms. Extreme fatigue, weakness, joint aches, headaches, constipation and diarrhea, greasy, yellowish stools, sweat that smells like ammonia, skin peeling out of my mouth, gas, burping, bad breath, weight loss and loss of appetite. In addition, I have mysterious skin rashes with hives on a daily basis, and started taking pictures of them to document this. In December of 2012, I tested positive for lupus with a positive ANA, and my doctor ordered the test because my eosinophil percentage had consistently been flagged on my blood reports as high. I still was not getting any answers, so I switched all of my doctors and have been going to the city. This is a world renowned hospital. Upon meeting my new doctors, they ordered a repeat of blood tests. This time the lupus was negative. The doctors quickly dismissed the lupus results prior, and said that sometimes people just test false positive, with no further explanation. Back in April of this year, my doctor informed me that my vitamin d level was very low, 12, should be between 30-40 he said, so I have been taking prescription vitamin d. I met with an infectious disease specialist a month ago, and she said she didn't think that I had parasites, but she would test because of my eosinophils. Bingo, I do have them, and now the doctors are trying to say they are parasitic but may not be causing my symptoms. For several months I have noticed that there is strange looking debris after blowing my nose into a tissue. Last night, I am about 99% certain that it was a small worm, certainly looked like one, and I was a teacher, so I am fairly well educated. I saved it in the tissue and put it in a ziplock bag. I don't know whether to call my doctor or not on Monday morning, as I don't trust him, and think he will once again be dismissive. I already went through the HIV phase with him, and told him I didn't have it, as I've only had 4 partners my entire life, have never had unprotected sex, I don't rim, and had an HIV test. I haven't been sexually active in about three years, so I knew I couldn't have it. I retested a couple of months ago to satisfy him, and it was negative once again. I have asked him if any of my past symptoms are connected, and he didn't think so. I disagree. The only diagnosis I have is another one of idiopathic nature, urticaria, (spelling) and says my blood work is fine, which it isn't, because my vitamin d was very low, and my eosinophils are still high. Any advice on what I should do? Prior to all of this stuff over the past 5 years, I was very rarely I'll. now I can no longer do many of the things that I used to, as I don't feel well enough, and I would really like to get some normalcy back in my life. Is there a doctor who can answer this without telling me that I am imagining things? The test results obviously indicate that I am not.
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