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Old 02-27-2011, 11:37 AM   #16
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Re: Difficulty Reaching Diagnosis

Discoid Lupus(DLE) usually is manifestations of the Skin only. In some cases DLE may present symptoms of Systemic Lupus Erythmatosus(SLE) DLE would explain the Hair loss,the rash occurances, and the sensitivity to the sunlight, called Photosensitivity. With some DLE patients presenting with SLE symptoms, a few diagnosed with DLE may eventually develop SLE. Blood Tests are not too conclusive for diagnosing Lupus. But can tell the course of, and those at risk to develop the complication Thrombosis. Solid indicators of Lupus is a positive Anti-Nuclear Antibodies(ANA) Test. The clear-cut winner in the diagnosis of Lupus race, would be a test of Antibodies to Double Stranded DNA Antibodies. Your age and gender are prime for Lupus. Keep pushing through. Get your answer. That way you can manage it better. God Bless

 
Old 04-17-2011, 11:42 AM   #17
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Re: Difficulty Reaching Diagnosis

Hi,
I doubt that this is the only thing causing your symptoms...
BUT, regarding your GI issues/ iron& Vit-B deficiency/ hair loss....they sound similar to the symptoms i was having before I was first Diagnosed with Crohn's Disease (an auto-immune Intestinal/Digestive tract Disease)..
Crohn's is where area's of my intestine (but it can attack ANYwhere from your eyes, mouth, and all the way out the other end!)... would get inflammed-and when it was being untreated-would create scar tissue...
.......that scar tissue would build up making it harder for food to pass through=bouts of constipation and then Diarrhea...
Anyways, the area I mainly have mine is called the 'terminal illeum'-the last 12 inchies of your small intestine before it turns into the large intestine.....this is the part of your intestine that absorbs Vit B-among other things...So, if this area is inflammed it could explain your chronic Vit B deficiency....It would also explain some of that low Blood count--whenever I have a flair-up my blood tests will show that I anemic(blood loss due the attack on your GI tract)....
Also, when you are experiencing severe or chronic malnutrition it can cause hair loss.....I will also get tiny little blonde 'baby hairs' along my hairline..... Hope you've gotten some answers already!!!
So, mabye you explore inflammatory Bowel disease or injury in your search for diagnosis?......

 
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Old 05-07-2011, 06:27 AM   #18
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Re: Difficulty Reaching Diagnosis

Have you been tested for Coeliac Disease?

I had very low b12 levels for years and I had a pretty good diet. Then I found out I had Coeliac Disease and I started eating gluten free and my b12 came normal!

 
Old 06-21-2011, 04:56 PM   #19
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Re: Difficulty Reaching Diagnosis

You can ask to have your C3 and C4 checked as well if you are still leaning towards lupus, they can clearly show if you are in the middle of a "lupus flare". I had a + ANA and my rheumy said it was very minimal and that I did not test + for anything else suggesting lupus...I received a letter a month later saying I have 'mild lupus(sle)' with the dr ssaying the test was not in at the time I requested to see my blood work. After educating myself, the original bloodwork she showed me showed I had the anti-Ro as well as many markers indicating lupus flare, silly doctor.

 
Old 08-13-2011, 04:46 AM   #20
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Re: Difficulty Reaching Diagnosis

Hi All,
I am tired or writing and searching for answers but decided to write as I feel for you all. I am in the same s...t. My issues also started at 13 but had more luck and lived till 32 before it all collapsed. So far I was told it is FMS (fibr...a). I am still hoping that this is it, nothing more just severe FMS. I said sever cause I seem to have every single symptoms other people have ten times stronger and after spending 12 months in bed crippled and in a suicidal muscle pain I think I can say it without hesitation.
I did all what you describe, tests, iron, everything and it was not until I logically approached the issues when I found some relief. I only hope it will also work for you and if it does pls spread the word. I always feel my symptoms worse at the beginning of a lunar cycle, face dry like hell, muscle twitch and do not heal, constipated and feels as if no digestion was happening, reflux comes in strong and more and more. I noticed one of you mentioned that it all started at about 13 y/o and that is correct. My initial symptoms also started at 13 and then got worse with every f... antibiotics treatment which got me even weaker and gave me more symptoms. If you think logically about what I am saying here you will realise it has to do with your puberty time which equals to hormones! I did my research and it was not easy to find a GP to work with me but managed to prove based on a few studies I found that my testosterone fluctuates as much as in women progresterone. I started with Testosterone because I was weaker after each month cycle and I knew I had month to live unless I do something. I tested my Free Testosterone on the 3 and 10 days of a lunar cycle and managed to get the lowest levels, but for endo it was not enough because my total was low but within rang 14 (10-50) but because my GP was running Wiley protocol she listed to me about my fluctuating symptoms and agreed to give me some testo to try. My Free T was 35 (41-150). it WORKED!!! After 3 days I started feeling symptoms going away quickly. Twitching decreased, weakness went away, injuries started healing. It was not a miracle you expect as it is not a cure ! but I extended my life for some time. I would not recommend doing full Wiley testosterone protocol because you will end up with enlarged prostate like me but I do not care. I am alive and with little pain, another issues that helped was my apparently high iron. I noticed that my ferritin was 140 (20-300), but my other results were low e.g. serum iron was 14 (10-55), I noticed that I had much higher levels 2 years ago. No doctor would give me infucion with this results so I took tablets and it helped again. My burning face improved but not the dryness. My eczema decreased a lot. It gave me hope, it led me to understanding the issue is hormonal, period. On top of that after last 2 years during which I lost everything in my life, wife, house, job I noticced that my symptoms not only fluctuate monthly but also daily. Stiff in am but quickly goes away and then getting worse at night. If you study thyroid hormones you will learn that it fits the picture the same with cortisol which works in the same cycle. I know I am much more sensitive then others and feel any little change in my body, but I know I am correct cause I managed to do something about it. I feel terrible without testosterone and pray my prostate will be fine. I decreased my dosage as with Wiley it is huge. I felt like a normal person on high dosage T but only in the muscle pain. Noting else was better but muscles, trust me that was all I needed. Let me post it and see if my writing did not disappear.

 
Old 08-13-2011, 04:54 AM   #21
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Re: Difficulty Reaching Diagnosis

I hope you at least try testosterone for your muscle pain. It is nothing new for FMS patient but for some reason all doctors are scared to do it. Just make sure you do not go over 10ml a day. There was a recently released patent by some pHd who suffers from FMS she found T helpful as well and is about start selling the treatment to others. I read the content of the patent and noticed she is using between 3-10ml for FMS. I used up to 20 ml a day but felt like a normal person. Now after 3 months my prostate got bigger so I know I need to decreased and hope it will shrink back. I will not go over 10ml . When to take less or more? well just get Wiley calendar and follow it but do not go over 10ml and simply do other leaves as it says and you should be fine or decrease it you can. That is all I can do for you at this stage. God bless you and I hope your journey will win one day. I am now on trying T3, I do not care for my life anymore as I have none left. I hope this revers t3 makes sense. I am now on 50mg a day and still nothing. At least I know I can tolerate it which is good. My reverse t3 to Ft3 ratio was 9 and it shoud be over 20 so lets see.....
ciao

Last edited by moderator2; 08-13-2011 at 05:36 AM. Reason: please do not post a commercial website

 
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