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Old 06-01-2012, 07:25 PM   #1
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Still searching for an answer.

Its been tough but I'm still searching for an answer as to what's going on with me. Brief background..as brief as I can possibly be..

Random virus when I was a little kid. Doctors thought it was spinal meningitis but the results came back unknown.
Been fatigued since high school, along with easy bruising. Anemia testing came back normal.
1 miscarriage
2nd pregnancy I lost 4 units of blood during my c-section and had to have a blood transfusion. Spiked a fever afterwards and had to stay in the hospital for a week.
Headaches increased, and I began having rib pain.
Fatigued continued, leg cramps, aches and pains etc.
3rd pregnancy I delivered naturally and had no complications.
Esptien Bar Virus ( showed up on blood test over 2 years ago)

After my 3rd pregnancy in 2008 my symptoms began to increase. I began the search in 2009 and am still looking for answers for what could be wrong. I was diagnosed with raynaud's, and fibromyalgia. My first rhuem. diagnosed me with fibro before running any test and determined that within a few minutes of seeing her. She pretty much brushed off my list of symptoms. My first set our tests with her came back normal. My 2nd set of test she re-tested my CRP and SED rate which came back elevated. I finally decided to switch doctors because I felt like she wasn't giving me the proper attention. She would spend a matter of minutes with me before sending me on the way. My 2nd rheum. (and current) confirmed my raynaud's and fibro, though she said she's uncertain of the fibro because I don't fit the whole criteria so she's been trying me on different medication to see if it helps (which it hasn't). She hasn't done any blood tests yet. My list of symptoms that have been with me for years are:

Fatigue, joint pain (neck, fingers, wrists, shoulders, knees, ankles, etc). muscle aches, extreme leg cramps, chest pains (on and off), dizziness, shortness of breath (on and off and happens randomly), easy bruising, ear pain, eye pain, canker sores (more frequent), stomach aches (mainly lower right, and upper right), nauesa, raynaud's, low potassium, low magnesium, sore, throat, rash over nose and cheeks that comes when I'm stressed or in the sun for too long, random red spots on my skin (come and go and more recent) random blotchy looking rashes (come on fast and don't last long), low grade fevers (off and on and more recent), fingers swell, and my finger actually got stuck once. Twitching eyebrow (recent and lasted for about 3 weeks), elevated crp & sed rate, headaches (daily and can last for weeks), forgetfulness, had my gallbladder removed, and was told I have a right bundle branch block but carido doctor isn't concerned about it.

That's pretty much my symptoms in a nutshell, new and on going. I've been feeling pretty bad the past couple weeks. My joints are acting up a lot, and my arms ache, my neck won't stop hurting, my ankle and knee are acting up, and I'm so incredibly fatigued. I wonder if I will ever know what its like to not feel tired again.

Does any of this sound familiar to you? I'm not looking to be diagnosed (only by my doctor) its just draining not knowing what's wrong with me. I'm hoping my rhuem. figures out the answer.

Last edited by ashly744; 06-01-2012 at 07:28 PM.

 
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Old 06-01-2012, 08:57 PM   #2
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Re: Still searching for an answer.

Hi there! Sorry you are feeling miserable. Sounds like you've been through a lot.

Previously I have posted information that may help you find answers and relief. I too suffered with a lot of pain & fatigue & Epstein Barre. Believe it or not, I found out that I have severe food allergies, and I only learned this in my late 30's. My nutritionst told me that if don't change my diet immediately, I will end up with MS, which is and auto immune disorder. He described it as the body attacking itself because of what we are putting into it. The blood testing I underwent was for delayed food sensiivities. This is something an allergist does not test for. There are only a select few places that do, and insurance most likely won't cover the cost,but I new that the had to be a reason for my pain and fatique.
The allergist pretty much tossed the results down infront of me, totally disregarding the validity. Doctors don't know everything.
I can say that if I don't eat the foods I am allergic to, I have energy, and am pain free.
The vast majority of people have no idea what is in the food we eat. Europe has banned certain ingredients from entering their food supply and you can be jailed if you don't comply. These ingredients are found in our food thogh, here in the USA! What would you say if I told you that some yogurts you can currently buy have detergent in them that you wash clothes with? Disturbing, right? Sadly it's true! Why? Because they can! It's about the almighty dollar.
Arm yourself with knowledge. Take control of your health!

Find good nutritionist and see what they have to say. I hope this helps you! Don't loose hope! I pray you find relief soon!

Blessings

 
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Old 06-06-2012, 09:03 PM   #3
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Re: Still searching for an answer.

Quote:
Originally Posted by sjs40 View Post
Hi there! Sorry you are feeling miserable. Sounds like you've been through a lot.

Previously I have posted information that may help you find answers and relief. I too suffered with a lot of pain & fatigue & Epstein Barre. Believe it or not, I found out that I have severe food allergies, and I only learned this in my late 30's. My nutritionst told me that if don't change my diet immediately, I will end up with MS, which is and auto immune disorder. He described it as the body attacking itself because of what we are putting into it. The blood testing I underwent was for delayed food sensiivities. This is something an allergist does not test for. There are only a select few places that do, and insurance most likely won't cover the cost,but I new that the had to be a reason for my pain and fatique.
The allergist pretty much tossed the results down infront of me, totally disregarding the validity. Doctors don't know everything.
I can say that if I don't eat the foods I am allergic to, I have energy, and am pain free.
The vast majority of people have no idea what is in the food we eat. Europe has banned certain ingredients from entering their food supply and you can be jailed if you don't comply. These ingredients are found in our food thogh, here in the USA! What would you say if I told you that some yogurts you can currently buy have detergent in them that you wash clothes with? Disturbing, right? Sadly it's true! Why? Because they can! It's about the almighty dollar.
Arm yourself with knowledge. Take control of your health!

Find good nutritionist and see what they have to say. I hope this helps you! Don't loose hope! I pray you find relief soon!

Blessings
No I haven't been tested for allergies, but I am allergic to grass, pollen, and a variety of fruits which make me get mini hives, itchy throat and ears. I just received a letter in the mail that includes a whole list of blood tests my rhuem. wants me to get...so we shall see!

 
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Old 06-07-2012, 07:05 AM   #4
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Re: Still searching for an answer.

Have you had any immunology tests done, such as ANA with pattern, etc? Raynaud's can appear on it's own or secondary to a lot of autoimmune diseases. Were your fingers evaluated by a nailfold capillaroscopy test, in light of your Raynaud's? Do you get sick after sun exposure? Is your blotchy rash livedo reticularis? Fatigue can go along with AI diseases as well. Lupus is called the great imitator because it's symptoms mimic so many other conditions. Plus I think that there are over 100 different arthritises, of which lupus is only one. Keep us posted and wishing you the best.

 
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Old 06-07-2012, 07:28 AM   #5
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Re: Still searching for an answer.

Quote:
Originally Posted by luca689 View Post
Have you had any immunology tests done, such as ANA with pattern, etc? Raynaud's can appear on it's own or secondary to a lot of autoimmune diseases. Were your fingers evaluated by a nailfold capillaroscopy test, in light of your Raynaud's? Do you get sick after sun exposure? Is your blotchy rash livedo reticularis? Fatigue can go along with AI diseases as well. Lupus is called the great imitator because it's symptoms mimic so many other conditions. Plus I think that there are over 100 different arthritises, of which lupus is only one. Keep us posted and wishing you the best.
Luca- Thanks for the reply. I don't know what a nailfold capillaroscopy is, but I have had my family doctor, my old rhuem, and my new rhuem. confirm the raynaud's. As far as sun exposure go, my boyfriend and I both notice that I get a reddish rash over my nose and cheeks when I'm out in the sun, and depending on the length I'm in the sun can vary how long I've had it for. So far its lasted over a week this time. We took the kids swimming a few days last week and on Monday and for the past few days I've been feeling more fatigued and sick to my stomach, but I'm not sure if they are related. Being in the sun does make me more fatigued. I don't know if my rash is livedo reticularis, as I've gotten a few different rashes, but I looked it up and does look similar to my legs, and feet when they get cold, but I'm not certain because I'm not a doctor. My new rhuem. just ordered lots of test, including the ana, and lots of others related to AI diseases. I have to take the paper into the lab.

 
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Old 06-07-2012, 08:07 AM   #6
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Re: Still searching for an answer.

Your rheumy should do the nailfold test in the presence of Raynaud's. It is quick and easy. They put a drop of oil on your skin just below and on your cuticle and look at them under a magnifying glass. It shows if you have capillary drop out which indicates autoimmune disease right away. I'm surprised that it wasn't done already. If you don't have drop out it doesn't mean that you don't have an AI disease, but if you do have drop out, that is certainly meaningful. (Most people don't, btw, but it is pretty common to one of the forms of systemic scleroderma, which in and of itself is pretty rare.) Livedo reticularis is pretty obvious lol, so if you get something that looks like it, snap a pic for your doc or any other rash, for that matter. Some people have it without disease but many people with AI problems have it. I get it on my legs, arms, tummy and even on my back sometimes. As to the sun, I can say this, if I'm out in the sun without sunscreen to the max and clothing protection, even for a duration as short as 10 minutes, I get what feels like the flu: fatigue, stomach upset sometimes to the point of throwing up, headache, and even fever sometimes, in the next few days. It is very common in AI diseases. Try staying out of the sun as much as possible and wear a good sunscreen when you are and reapply often and don't forget a hat. See if that helps. I usually know the location of every tree where ever we go, lol, and i invested in a uv proof umbrella for the beach. I even have to be protected from the sun when the car's sun roof is open.

Last edited by luca689; 06-07-2012 at 08:11 AM. Reason: spelling

 
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Old 06-07-2012, 09:07 AM   #7
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Re: Still searching for an answer.

Thanks again, Luca. I'll have to ask my Rhuem. about the nailfold test next time I go in. I've been steering clear of the sun this past week since I've been feeling so crummy, and because I developed this bumpy rash that covers my stomach and its slowly diminishing. My rhuem. has a couple of my rash's on file, but I didn't think to take pictures of my skin when I'm cold. I'll do that, and thanks for the tips as well. How high of a SPF do you use? I notice even when I use 30 that I still get red across my nose and cheeks, and my chest gets it as well.

 
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Old 06-07-2012, 09:41 AM   #8
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Re: Still searching for an answer.

SPF 50 plus hat or I have to spray my head and ears, lol.

 
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Old 06-07-2012, 09:48 AM   #9
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Re: Still searching for an answer.

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SPF 50 plus hat or I have to spray my head and ears, lol.
Lol, thanks. I figured I needed a higher Spf! I shall see what happens. I feel like I've been on this road forever, but hopefully it won't be much longer!

 
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Old 06-07-2012, 10:28 AM   #10
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Re: Still searching for an answer.

It does feel like it takes forever to get treatment, doesn't it? I think it was about 15 or so years before I was taken seriously enough to even get a referral to a rheumatologist. I am just very lucky that he took me seriously and treated me right away and kept my disease activity at a minimum.

 
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Old 06-29-2012, 11:45 AM   #11
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Re: Still searching for an answer.

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Originally Posted by luca689 View Post
It does feel like it takes forever to get treatment, doesn't it? I think it was about 15 or so years before I was taken seriously enough to even get a referral to a rheumatologist. I am just very lucky that he took me seriously and treated me right away and kept my disease activity at a minimum.
Got my results and she said everything appeared normal. The only thing out of range was my A/G ratio. I hit another dead end, and back to feeling lost and uncertain on what's going on with my body. Thanks.

 
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