Discussions By Condition: I cannot get a diagnosis.

Please help!!! I am a 31 y/o mother!!

Posted In: I cannot get a diagnosis. 21 Replies
  • Posted By: madipoozmom
  • April 19, 2007
  • 01:00 AM

I need help!!! I am a 31 y/0 mother of a 7 y/o. I feel terrible ALL THE TIME!! For the last year, I have gone back and forth to the doctor for all types of things from fatigue to stomach trouble to lose of appetite. On January 20, I broke out in a rash on my legs that will not go away. It will subside for a couple of days but it never goes away. I finally had a biopsy in March that came back inconclusive. It determined that it could be a arthropod bite, dermatitis, lupus, scleroderma, or a drug allergy. I had follow up labs drawn to rule out the connective tissue disorder. When they came back, my doctor said they were inconclusive and if I broke out again, go to a dermatologist. I went to the dermatologist and they wanted my lab results, so I got them from my GP and faxed them to the derm. I looked at my results and noticed that my ANA was speckled and 1:160 which is high. I went to MLT school and I know that could be a sign of lupus and further tests should be performed. He did no further tests and just wrote that he would follow my symptoms. Is it just me being paranoid or does something not add up????? I am sooooo tired of feeling bad. My daughter asked me all the time why I feel bad and I don't know what to tell her. It breaks my heart to not feel like doing things with her, but sometimes I just can't. If anyone knows anything else for me to do, please tell me.

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21 Replies:

  • I know how you feel. I am a 30 year old mom of 3. I am always exhausted. I remember always being tired. As a teenager I would come home from school and sleep. In 2002 I broke out with hives all over. If something touched me I would immediately get red and it would turn into hives. I finally went to the Dr I thought it was from the med I was taking ( lipitor for high cholesterol) he told me that doesn't cause what I have. So i did suggest maybe it could be lupus since my mom has that and vasculitis etc well this Dr laughed so loud and said you do not have lupus and put me on prednisone. It helped with the hives at the time. Soon the hives came back so I went to another Dr who told me to see a dermatologist then they sent me to a allergist. They diagnosed me with dermagraphia and said they don't know why people get hives but some do and they can last for a year and dissappear. He treated with zyrtek it worked for the itchiness. Eventually I stopped going because I didn't get anywhere, And I ignored everything else fear of getting laughed at again. Last year I started getting this heavy feeling in my stomach like pressure and I couldn't ignore it so finally I went to the Dr rhey ran blood work on me and my liver enzymes came back high. It wasn't from the lipitor cause I stopped taking it in 2003 when I became pregnant so I was off of it for 3 years. So she ran more blood work on me to test for hepatitis, ebv etc. All hep came back neg but my liver enzymes were higher then the last and the ebv was really high in the 2000. Also my ana was 1007 and it shouldnt be over 99. So now she sent me to a Gastro and we are cstill trying to figure out why the high #'s for the liver. I had an ultrasound, and ctscan w/contrast it came back normal. I am also seeing a rheumatologist now and he repeated the test and my Ana was 993 and I also tested positive for sjograns which is another autoimmune disease. Ireally have no complaints except I am extemely tired and itchy. I just want energy!!!!! Sorry to ramble on I had to get it out of my system. Maybe you should see a rheumatologist since you had an elevated ana test.
    Anonymous 42789 Replies Flag this Response
  • Thanks and I will look into that. I appreciate your post. It helps to know that someone else is going through the same thing. My aunt works for a rheumatologist so I might check with her.
    madipoozmom 5 Replies Flag this Response
  • I would look into celiac disease. it can cause many symptoms that do not relate or sometimes no symptoms. There is a Blood test the IGA or TTG test to help diagnose it. I reccommend you get them if anything to just rule it out, yet this may be the answer. 1 in 100 people have it yet about 90% of them don't even know it. In the USA it is estimated that it takes up to 10 years to diagnose. the cure...........No longer eat wheat , rye or Barley. Go to a GI doctor who is familliar with it.
    Anonymous 42789 Replies Flag this Response
  • I sympathize w/ you....see my thread, and see if we share any of the same symptoms: http://forums.wrongdiagnosis.com/showthread.php?t=13134
    FixMEdoc 53 Replies Flag this Response
  • Be checked for water born parasites from well water etc..This can cause some or all of fatique, chronic fatique, stomach aches,Chronic pain, and symptoms similiar to Chronic Bowl syndrome.People who have chronic bowl syndrome should be tested for parasites because they may NOT have chronic bowl syndrom. It could be parasites.You don't have to travel outside your country to get parasites.Our situation occurred in Canada.Parasites need to be treated with the right medication and will take a few months for your body to get back to normal.
    Anonymous 42789 Replies Flag this Response
  • I know how you feel. You can see my thread, by V52 on 4/24. I forgot to mention that I have dermographism or dermagraphia (I have never heard of anyone having it till now in the 1st reply). They call is the skin writing disease, but they dont' know what causes it. Any kind of pressure on your skin can cause hives. If you scratch an itch, the scratches welt and become hives. I was having nausea that went away and diarhea for one month that has been gone for 2 months. I think that I have some kind of lupus-like disease, or have been exposed to a virus or something is just out of whack! It is so frustrating, especially when you are a mother of young children and have to function despite being tired. My children suffer because of my tiredness.... Good luck
    Anonymous 42789 Replies Flag this Response
  • Well, I have some kind of new development. I went back to the dermatologist this week and he thinks something is "perculating". He wants me to see a rheumatologist. He says it's better if you catch it on the front end. I have talked also with a friend whose wife has lupus. He said all my symptoms sound very familiar to him. Just wanted to keep you updated. I see the rheumatologist on May 14. I will post when I know something from him. Thanks for all your posts.
    madipoozmom 5 Replies Flag this Response
  • PLEASE go to www.ahummingbirdsguide.com there are hundreds of people on this site with similar sx if you look around I have been sick, having sx on/off for 4 years,,,just found this info the other day go to L side of home page to symptoms page then, at the bottom of the first paragraph there is a link for a summary of symptoms...write down as many as you have no matter how trivial they may seem...PLEASE anyone reading this who has been to several doctors, been sick for a while and cannot get a diagnosis go to this site...good luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • I'd like to add that anyone with autoimmune symptoms, or a diagnosis of autoimmune disease, to look into a form of treatment called NAET. NAET is the only treatment I am aware of that actually reverses allergies, and can readjust the immune response in a noninvasive way. There is a correlation between an autoimmune response, and chronic allergic conditions. Please look into this, and visit www.naet.com for more info. This is a treatment which requires persistance and patience and, unfortunately, money. 10-15 treatments are usually the minimum required. But I cannot stress this enough - it will change your life! It changed mine. Dr. Devi Nambudripad is a genius! Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Dom...what exactly is NAET at this point I'm very open-minded and am interested in much of non-traditional medicine/treatments...Please tell me what it stands for so I may search it...Thank you, mommy cat
    mommy cat 1654 Replies Flag this Response
  • Mommy Cat:NAET - Nambudripad Allergy Elimination Technique. www.naet.com Also, you mentioned in another post you are from Upstate NY? I used to live in Millerton, NY and have family near the finger lakes region...where is the nearest town or city center that you live near? I will research practititoners for you if you'd like:) . Best wishesDOM
    acuann 3080 Replies Flag this Response
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  • DOM I live nearest to Utica NY...Syracuse is the next closest...I appreciate any info you have that may help me in my quest to be well...Thank you again...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Well, I go to the rheumatologist tomorrow. I'm kinda of anxious about what is going to be said and done but I am ready for an answer.
    madipoozmom 5 Replies Flag this Response
  • Mommycat,There is a practitioner in Syracuse, there may be one closer, but I am less familiar with the towns in that area - best to look up www.naet.com and see if there is a closer practitioner:Ewa Lukasik, M.Ac., L.Ac., Vortex Healing Contact Information Company: Acupuncture WellnessAddress: 151 Thathan Road Syracuse, NY 13203 USAPhone: 315 440 8853 or 315 445 4900Fax: 315 445 4903e-mail: Click to e-mail PractitionerWebpage: NAET® CourseworkBasic : 11/98 Basic Refresher: MRT: 8/05, 6/99 Advanced I : 6/99 Advanced II : 8/05 Advanced III : Symposium: 8/05 Madipoozmom, Hope all goes well and keep us posted on your visit.DOM
    acuann 3080 Replies Flag this Response
  • I found the post about the person with chronic hives interesting, since I've had chronic hives for 9 years. I also have extreme fatigue, run low fevers, joint and muscle pain, sore and swollen lymph nodes, migraines, NO energy...more vague symptoms than I can remember or can list here. I was tested for lupus, Lyme's, other connective tissue diseases, viruses, etc., etc. After years of tests and doctors, I assume I have Chronic Fatigue Syndrome until something else comes up. The first few years were rough (I was 34 with two young daughters), but I learned that I may never get a diagnosis, and learned to manage the fatigue and symptoms. I know the frustration and guilt that comes with feeling exhausted, useless, sick, and neglectful. Don't feel ashamed for sleeping or being too tired. Be patient, but DON'T put up with condescending doctors. I finally found a great doctor who listens and is willing to try anything to help.Sorry, I digress...hives. Torture. I would be covered in them...have even had hives on my eyeballs! The itching and burning! I also would get wheezy (hives internally). I had to be on constant antihistamines, which not only made me drowsy (understatement), but didn't work on the hives either. Doctors wanted me to go to an allergy specialist (even though I had been going to an allergist since I was 17 and was very well informed on allergy), but to do the testing, I was instructed to not take antihistamines for a week. That was not even an option. My doctor tried me on Tagamet (cimetidine). LIFE SAVER! Tagamet is a histamine blocker at the stomach level. It's the only thing that works on my hives. I have no side effects, no drowsiness. I take a prescription dose (400 mg.) every 4 hours.I have had to watch the clock for 9 years, but if I don't take the Tagamet every 4 hours I will break out in hives. I take it religiously. If you have chronic hives ask your doctor about prescribing Tagamet. I also found it has made my regular allergies almost nonexistent.The 400 mg. dose of cimetidine (Tagamet is the name brand) is prescription, and the generic is affordable. I still have no diagnosis. Hives can also be a symptom of an autoimmune disease, or can be an autoimmune disorder in itself. Most chronic hives are idiopathic and the cause will never be known.Tagamet isn't a cure, but it sure seems like it!Good luck, you guys. I know how you all feel. Do your own research, but don't let it overwhelm you. Knowledge empowers, but patience and acceptance (at some point) are crucial too.
    Anonymous 42789 Replies Flag this Response
  • Madipoozmom...PLEASE look at hummingbird site if you haven't.just to let you know....me, my cousin, sister in law and her sister all attended same school in 80's...come to find out, we are all having symptoms!!...All of our mothers have been diagnosed with Fibromyalgia?????????????? I asked my doctor if Fibro could be a mild form of ME....I'm seeing way too many coincidences here.............Please know that most people I've written to are compaining they have seen numerous doctors(including myself) and not one of us can get a diagnosis............Please know Montel Williams did a show on Tues regatding a sudden outbreak of fibromyalgia in LosAngeles recently..far too many coincidences..are these symptoms from when we were in school?did we all catch ME and bring it home to our mothers??? I am a nurse and please know I have mentioned all of this to my doctor and he is very overwhelmed with all of the info/questions I gave him........I'm not trying to shove ME down everyones throat.just trying to let you know...in the 80's there was a huge outbreak...it's viral/contagious/scary.Good Luck and Godspeed.mommy cat
    mommy cat 1654 Replies Flag this Response
  • Well, I finally may have a diagnosis. I have switched Family Practice Doctors and my new doctor did alot of lab work. He is doing some more lab work tomorrow but he thinks I may have Hemachromotosis. I will see what happens after these lab results come back.
    madipoozmom 5 Replies
    • October 23, 2007
    • 02:27 AM
    • 0
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  • Please keep in touch as MANY people have some of your symptoms.
    rad-skw 1605 Replies
    • October 24, 2007
    • 08:52 AM
    • 0
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  • OK, now after almost a year, I have a diagnosis. I have a liver condition called NASH (Non-Alcoholic SteatoHepatitis). Your liver stops breaking down fats and so any fat you eat stores up in your liver. It will eventually lead to cirrohois and liver failure. The only treatment is to go on a low fat diet. There are no meds, etc. Low fat is the only treatment. I'm just glad to know that there really is something wrong and I am not crazy!!
    madipoozmom 5 Replies
    • January 6, 2008
    • 02:08 AM
    • 0
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  • OK, now after almost a year, I have a diagnosis. I have a liver condition called NASH (Non-Alcoholic SteatoHepatitis). Your liver stops breaking down fats and so any fat you eat stores up in your liver. It will eventually lead to cirrohois and liver failure. The only treatment is to go on a low fat diet. There are no meds, etc. Low fat is the only treatment. I'm just glad to know that there really is something wrong and I am not crazy!! Interesting. What about taking lipase, the enzyme to help break down fats? OR taking a good quality vegetarian digestive enzyme capsule several times daily to help with your digestion? I would think it would be helpful. Are you only eating vegetable fats or some animal fats? I would think some vegie fat would be less toxic to the liver. How are your symptoms now you are on this diet? What is the root cause of your condition- has the doctor said? Is it viral, or hereditary? Best wishesDOM
    acuann 3080 Replies
    • January 7, 2008
    • 04:47 PM
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