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 Replies 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.
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.
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.
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 RepliesI 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.
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?
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?
How did you discover that you had a autoimmune disease? What were your symptoms prior?
View 8 RepliesI 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 RepliesI 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 RepliesIt has been suggested to me that I may be developing Trigeminal Neuralgia (TN) due to my rapidly deteriorating Cervical Spondylosis (CS) in the top of my neck.
The Cervical Spondylosis (CS) pain is an awful (its feels like you've just broken a bone - which is a completely different type of pain to Trigeminal Neuralgia (TN).
I use DHC (Dihydrocodeine) and Oramorph (Morphine Sulphate) daily to reduce the CS pain to a level which allows me to continue functioning at work. I have medical complication/allergies to Steroids and NSAIDS.
The suspected Trigeminal Neuralgia (TN) starts with my right eye twitching uncontrollably and then it happens about 20 seconds later ...
it feels as though my upper and lower jaw bones are being crushed/compressed/ripped out, I am almost completely paralyzed with this short sharp alternating type of pain.
If I move my neck head around - it sometimes stops the short sharp alternating type of pain for a few seconds but then it shoots down the left side of my face ...
An additional small dose of morphine 5ml helps to take the edge of this new type of pain but only after about 30 mins. I really dont want to keep having to increase my medication ...
Any suggestions as to what alternative medicines may help to reduce the pain this Trigeminal Neuralgia (TN) condition please ?
Last year(2014) I started having some health issues. In March I was diagnosed with Mastoiditis. After that I began to have vision issues with pain and was diagnosed with Optic Neuritis in my left eye. I did 3 days of Solumedrol at home and followed with oral steroids. Since then I have had on and off hearing loss on left side and have lost my sense of taste 3 times for a few weeks. I recently had a mri and they found a 12mm choroidal fissure cyst on my left side. I also have tingling and numbness in my left foot and leg. I still have blurry and double vision in my left eye at times. I had previous ct scans and mris and there was no cyst present. Could this newly found cyst be causing my issues?
View 1 RepliesI 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.
About a week ago, I was at home at the computer (I believe I was listening to music at the time), and I noticed that the hearing in my left ear had been significantly diminished (but not completely gone). About a minute (perhaps even less than a minute) later, it returned completely to normal, and so I assumed that it was just ear wax or something, and everything was fine now. However, a few seconds to a minute later, it went back to being diminished again. I can't remember for certain if I felt anything physically when all of this happened, but there may have been something that I felt in my ear - which led me to believe it was probably just ear wax.
I have researched on-line for possible solutions to this kind of problem, and I have tried every possibility that I could - peroxide, warm olive oil, blowing as hard as I can with my nose and mouth shut, blowing as hard as I can with my nose and mouth and other (good) ear shut, nasal decongestant (which successfully clears up my nose, but doesn't have any effect on the ear), hot steam bath, Similasan Ear Relief drops that are supposed to clear up water in the ears, jumping up and down with my bad ear tilted toward the ground, jogging, and of course trying to dig out ear wax with the ear wax curette that I have. Unfortunately, nothing has worked, and my hearing has been about the same ever since a week ago when it went out (diminished) for the second time.
I have been able to remove a lot of ear wax with the curette, and sometimes it seems to make it a little better, but it never restores my hearing to normal. Sometimes I feel like I am right at the spot where it is clogged up (if indeed clogged ear wax is the problem), because the curette seems to be hitting a spot that's clogged with ear wax (judging from what it feels and sounds like), but then when I dig out a bunch of ear wax at that spot, my hearing is still the same or perhaps only slightly better. Perhaps I am actually pushing the ear wax further inside, which was mentioned as a possible negative effect of trying to remove the ear wax yourself. Also, I am wary of not poking too hard or too deep, as that was also a warning given at the sites I visited in my research.
Swallowing never seems to do anything, but it's interesting that when I have a strong belch, I can feel pressure inside that left (bad) ear, and it really feels like it's about to burst out and expel whatever is stuck (if it's the case that something is stuck), but it never does. Maybe whatever is stuck in there [ear wax, presumably] is just in so tight that nothing seems to be able to remove it. However, the odd circumstance that occurred when the problem first originated - which is the fact that it got better right after getting clogged up, and then got clogged up again - would seem to suggest that there may be another reason for this happening, other than plugged-up ear wax.
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.
View 52 RepliesHas anyone looked into treating the autoimmune part of sarcoidosis, if so, what was the outcome?
View 17 RepliesDoes that mean that we women are more susceptible to viruses, respiratory infections, etc.? Do most follow a certain diet ?
View 25 RepliesHas anyone read or been told by their doc they should "not" take probiotics if they have Hashimoto's or other autoimmune illness?
I read somewhere that one with autoimmune problems should not take probiotics that it could cause systemic yeast infection. Now I can't find that article. Everything else I read states probiotics good for autoimmune disease.
I have been living with AIH for 14 years, first diagnosed when i was 14 years old. Luckily I am fairly stable with the odd flare up now and again. I am being looked after by the Queen Elizabeth Hospital in Bham and they are brilliant. Currently i'm on 50mg of Azathioprine a day and its brilliant with no side effects. I have been on Prednisolone in the past and i've not got on well with it. My doc keeps mentioning the possibility of me having to go back on it in the future but I don't like the side effects.
View 41 RepliesWhat can I do while I wait to see what medication is going to help me. Predisone and hydroxychloroquine 200 mg
View 1 Replies