Autoimmune Diseases For Hashimoto’s thyroiditis (underactive thyroid), Graves’ disease (overactive thyroid), Lupus, Crohn's disease, all types of arthritis, and all other autoimmune diseases. [Multiple sclerosis (MS) and Myasthenia Gravis (MG) have their own forums below.]


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Old 08-16-2010, 08:58 PM #11
buttercup1975 buttercup1975 is offline
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yes, I started out with what I thought may have been the flu, but thought it was weird in June to have a flu, Doctor - meaning my GP - that I recently told to get lost... another story, anyways she automatically gave me antibiotics and told me it would take a couple of days to get over the flu, it didnt go away so I went back, she then because my cough wouldn't go away said I have bronchitis. gave me inhalers and more drugs nothing worked, I tried to go back to work and did so for 3days and was extremely winded, outta breath and so very tired, along with the same cough and clearing the throat of every 5-10 minutes. I could sleep for 12 hours and go back to bed for 8 more hours.. I told her of these symptoms and she then did blood work and said that I had a ANA positive with 1;160 nucleolar pattern, then said she thought I had Scaladerma, then after a week of waiting told me It was neg. I then went back in for more blood test and she said they all tested negative..... I say okay then what do I have? She then set me up for a Rummy and I see one that I am on an urgent waiting list to get in early but apt isn't till Sept 10! I then started getting a new rash, it was more like a hive that itches something fierce and its ALL over my body EVERY morning. Unlike the rash I got before that was non- itchy and it was pimply like this on has a mind all on its own, this isnt a figment of my imagination its a rash, its something you can see, touch, examine. I know I'm rambling now, but just trying to get out my frustrations...lol... I told my GP that my left arm has gotten really weak, and the finger tips have went numb, she looked at me like I was crazy, I sometimes think I am going crazy because of all of this, and she said, well we tested you for lupus it was NEG. you don't have it we tested you for about 5 other autoimmune and everything is normal...... Get ready ... you have post nasal drip (because of my lung issues) and anxiety (due to my rashes and other stuff) I told her she was the crazy one, and what I have isn't coming from my nose or head at all but my lungs and the only thing I have anxiety about is a doctor who wont listen to me on how I am feeling. I have a new doctor that I am scheduled to see the 30th and I met with her last week she seems pretty good, although she admitted she didn't know much about Autoimmune stuff - She didn't look at me like I was making this all up in my head, but seemed sincere. I have tried my best to keep accurate journal on everything going wrong with me, and have even had my husband take pictures of the rashes I get, but the more I research the more confused I get, I just cant believe a doctor could just brush your emotions, health and well being to the side like mine did and then basically tell me its in my head? If my blood test show a Positive ANA of 1;160 and its nucleolar ( i know ANA's can change from POS to NEG) doesn't that even suggest something wrong?? I know how I am feeling and its not me. I can not wait till my Rhummy apt, and I pray they will at least find something, so they can start treating me so not only can I 'look' normal again, I can be healthy again. Sorry such a long rambling story but it just so frustrating when NO ONE can tell you whats wrong and they give up on you like your a person who wants to be lazy, or don't want to work, or wants sympathy. So very hard to deal with this, and if I have any anxiety now, it because I don't know what I have.
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Old 08-16-2010, 11:29 PM #12
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I know the feelings that you are having, the frustration, anxiety, confusion and the panic in wondering what you have and how serious it can become. I know because I felt them too. My symptoms were involuntary muscular twitches, frequent muscle spasms, cramps (usally in my calves), anxiety, constant fatigue, episodes of foggy brain/poor memory, frequent panic attacks among a few others. My GP and neurologist both did rounds of testing, ruled out Parkinsons, MS, and ALS, and then told me that it was just stress related. They felt better in telling me this diagnosis, but I was getting worse.

So believe me when I say I know what you are going through. Some random muscle in my body would contract briefly every few seconds every day 24/7. It wouldn't stop. Somebody watching me wouldn't be able to tell, but I felt it and every time it happened it was a constant reminder that something was wrong. It started last December for no apparent reason. I was 30 years old and in good shape. I excersised, ate healthy, never smoked a day in my life, and only casually enjoyed acoholic beverages.

It was not until I had seen multiple doctors who all said my twitching was 'benign' and wrote me off that I began to pursue answers in other areas. My mother was always big into homeopathy and I always thought she was crazy for doing so. I always believed that mainstream medical doctors knew best. I found myself in a unique situation though where I had nothing to lose. I found a homeopathic doctor in my area and made an appointment.

I was still reserved and very skeptic when I saw them, but I tried to keep an open mind. When they first told me that my symptoms could be related to my digestive health, I thought they were jumping to a pretty extreme conclusion. I kept my open mind though and aksed tons of questions. I'm a mechanical engineer by trade and I like to know how things work. To my amazement, all of their answers and explanations actually made sense. It was enough to allow me to humor the idea and pursue it further with my own research. To my further amazement, I have found a lot of information that backs up the very strong link between your digestive health and your overall health. Unaddressed digestive health problems can lead to neurological and neuroimmune disorders. There are links on this very forum under the sticky tabs that further back up this strong connection. Check out the 'Gluten File' under the 'Gluten allergy' forum section to see what I mean.

Unfortunately so many of our underlying digestive health problems are caused by antibiotics. Antibiotics don't discriminate which bacteria they kill and our helpful digestive bacteria that live in our intestines are on the front lines each and every time we do take them. Sometimes we get a dose of antibiotics without even knowing it when we consume meat from animals that were fed antibiotics. Beef is a good example where this is far too common.

When our helpful bacteria in our digestive systems is weakened, a natural yeast that lives in our digestive systems called Candida can take over. Normally Candida is kept in check by the good bacteria, but if unchecked it will grow, spread and mutate into a fungus. This fungus weakens our intestinal linings and allows the walls to become more porous. Eventually undigested food proteins, waste and Candida itself seep into our blood stream.

I have also learned that our immune systems are primarily based in our gut and this is why our immune systems are so sensitive to our digestive health. Our bodys become overloaded when things enter our blood stream that are not supposed to be there. Our bodies make antibodies to combat the Candida, food proteins and other toxins that are allowed to enter our blood stream. These antibodies begin reacting to the foods we eat and even begin to target our own tissues. This is how food sensitivities, allergies and autoimmune disorders are created.

Furthermore the Candida itself spreads to all parts of our bodies and wreaks havoc causing all kinds of other symptoms and problems. Candida itself can cause fatigue, skin conditions, joint pain, poor memory, anxiety, depression, neurological symptoms, and much much more. The food sensitivities also can cause a lot of these symptoms as the antibodies created by your body to fight the proteins can have adverse affects on your health.

The condition of having a more porous intestine wall is called 'Leaky Gut Syndrome.' If I were you, I would try to keep an open mind and find a homeopathic doctor who specializes in digestive health. You don't have much to lose by giving it a shot and you have so much to gain. I am so thankful that I was able to keep an open mind because it completely changed my perspective. Don't get me wrong, I still believe modern medicine has its strengths, but I am no longer a one sided person when it comes to medicine. I now have a deep appreciation for what homeopathy brings to the table as well. Thank you for reading this post and I wish you the best of luck.
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Old 08-17-2010, 07:45 AM #13
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Hello, I am new too, just one week. I cannot answer you question, but I rarely think our symptoms are in our heads. Thay can be the doctors answer when he can't find out what is wrong. Do not give up. It may take another doctor in a different field. People on this list may have more suggestions for you.Good luck and I feel blessed that I found this list
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Old 08-17-2010, 07:57 AM #14
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Hello, and I am sorry you are going though alot. I was so amazed at the information brought to your thread here this a.m. One of my conditions is alopecia universalis. In my case an auto immune deficiency according to mayo clinic in l980. I know it is one specific antigen causing it. I do know from research these conditions are and can be complicated. I wound up in endocranology and derm people for that. I entered an experimental program with DNCB. All the immune diseases take alot of in depth studies. I really wish you the very best and I hope they find out what is wrong with you. Symptoms for the most part are not in our heads. ginnie
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Old 08-17-2010, 11:39 AM #15
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Default Just wanted to say thanks for all the support!

I will keep everyone posted with any new outcomes or surprises... You all have been very kind!
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Old 08-17-2010, 10:00 PM #16
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Default Thru all this 'congestion'? ....

Has your doc done any lung x-rays? DUH? What about basic CMP[Complete metabolic panel] or CBC [Complete Blood Panel]? Plus urine tests? Any doc should could start there and do follow-ups for any basic protocols!
I'd had both blood tests and the urine tests during and long after my pneumonia. I was on antibiotics for over 2 months! Then got the neuropathies. The CBC should have been done BEFORE prescribing anti-biotics? Ask to get copies of your medical tests only for the last few [as needed] months If they aren't there? Think about changing docs if you can.
To back things up further? See if you can get to a dermatologist [skin doc] and I"ll bet they do the tests needed? PLUS get you salves and potions you need to help you with your rash until you get diagnosed! Call first thing tomorrow, as they're as hard to latch onto than neurologists? But, if you ask for and get in on a cancellation? Once you're IN? You are IN! Good luck, and geesh! I'm feeling sort of itchy myself now! Hugs!!!'s - j
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Old 08-30-2010, 08:45 AM #17
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Hey yall! I have a New GP apt, as I told you guys before I fired my old GP because she just wouldn't listen, and the final straw was when she sent back my FMLA paper work BLANK!!! So I called the HR for the Hospital and and got my needed paper work filled out and I hope got some reprimanding for her, any who, I see the new doctor today, and I got moved up 10 days earlier to get in to see my Rheumy! All great news, and hopefully I can start digging more into what it is that I got.... once again thank you so much for all your support, I never knew I had this fiestyness in me!!
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Old 08-30-2010, 06:29 PM #18
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Default Great and greater!

Yes, you must keep that 'feistiness' or nothing will happen.
You complained about your EX-doc in the best way one can, bad-mouthing some docs to other docs isn't productive [after all? They mite be golfing pals].
My line for changing is usually 'We didn't communicate that well.' and leave it at that...unless suggested to go to that doc again. About one, when I'd gotten that suggestion? I quietly replied: 'Only over my dead body'. Dislike was conveyed and duly noted.
After learning a heap of good information from folks here and a lot of reading, I've learned that some docs simply don't even try those extra steps or tests to eliminate the hundreds of neuro possibilities for such miseries. I was lucky on my second try, and it's saved my life.
With specialists? Once you go thru that first waiting period? And evaluations? YOU ARE IN!!!
Don't talk about your fears and emotions as such at first tho? Just think really hard and write out in a time-line, what all has happened to you, then when it happened, who you saw, and try and remember what tests you have had-and which docs ordered them. [This last part is the worst! I'd found I could back track via my checkbook and medical plan Explanation of Benefits {what the insurance had paid}] Once YOU write this down? You will be surprised at how much info you really have gathered together about YOU over your times with these problems starting to now.
The scariest part is the fear of IT [whatever it is?] getting worse then even more so! The hope you must keep is that there ARE good docs out there who DO listen and try to help.
I'm crossing my fingers that this Rheumy and you will be able to talk and get tests done. Be prepared for a possible BUNCH of tests to be done soon, fast and furiously. GET THEM DONE! Sooner the better-starting out on a new medical roller-coaster ride for sure. I've been on four 'rides' in the 6+ years since I started my neuropathy? And the more I learn, the more I find I need to learn more!
Let us know what's happening, and don't EVER give up! 's - j
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Old 09-08-2010, 02:25 PM #19
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Be sure to have your new doctor check for sarcoidosis: http://en.wikipedia.org/wiki/Sarcoidosis
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Old 09-08-2010, 05:53 PM #20
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okay so now I am about as confused as confused can get, since the last time I have chatted on here I was really excited that I was able to get into the Rhummy 10 days earlier.... Well I was hoping FINALLY we are going to find out what the heck is going on with me..... I didn't..... and to make things more complicated I was told the new test that were done, a chest xray, thyroid test, urinalysis and another lupus check were all NEGATIVE and the stumper is, they did another ANA test and it came out NEGATIVE!!! I have also been sent to a dermatoligist about all of these rashes.... I do not know the results of these yet, they did a biopsy on some of my rashes and this was not a pleasent procedure it left me with a chunk of tissue missing and 3 stitches....... I went today for Pulmonary lung test, and the lady that was doing the test said they are a little on the low side of things.... but still has to send these test she gathered to the Rhummy for anaylising ... I think I am just going to give up, Im so tierd of this whole health thing going on and being told my blood is SQUEAKY clean - and this wouldn't be a bad thing if I was feeling normal or myself in fact it would be GREAT news! I was almost hoping they would find something ... but now Im starting to think its in my head.... Im so very depressed now....
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