Page 3 of 6 FirstFirst 12345 ... LastLast
Results 21 to 30 of 57

Thread: Stripped of my diagnosis : (

  1. #21
    Join Date
    Apr 2010
    Location
    Mackay, Australia
    Posts
    272
    Thanks
    84
    Thanked 108 Times in 68 Posts

    Default

    OMG!! I have gastroperesis! I have been going to the doctor for MONTHS about this... she just keeps saying take the laxatives and we will see. She says nothing more. I keep trying to tell her, I am not constipated, the food just never leaves my stomach and sometimes when it finally does, it hurts. My digestion just totally stops and nothing happens. I am so angry that she hasn't come up with this as an option yet. Its been a really frustrating problem because nothing at all fixes it. It seemed for a while that sticking to a gluten free diet helped a bit but I have maintained the extra fiber and gluten free diet and am right back at the drawing board. I am sick of feeling like I am horribly full all the time but have hunger pains. It all feels very wrong.

    I am really cranky with doctors recently. How can they take back a diagnosis! If they aren't certain they shouldn't diagnose in the first place, or at least warn that they are tentatively diagnosing at this stage. I feel terrible every time I go to the doctor because there is just sooo much wrong with me and I feel like I just sound like an idiot. You need to change doctors if he wont listen. Even if you have to make appointments during work. And dont tell your husband your diagnosis has been taken away from you... people without lupus rarely understand and seemingly look for any way to dismiss the disorder. Having your partner dismiss your condition is not pleasant, trust me.

  2. #22
    Join Date
    Apr 2011
    Posts
    156
    Thanks
    0
    Thanked 9 Times in 6 Posts

    Default

    I hope you mean safe laxatives like Miralax, fiber, or something. I am not constipated either, but there are times I can go a week without going, after a bout of diarrhea.

    It's too frustrating to get this diagnosis, and I am not fighting with a rheumatologist to get it. She treated me like my health problems meant nothing.

    Why is it that one patient can get a diagnosis if autoantibodies are present, and the next one can't? I found this info for Lupus, thought it was interesting:

    Look for auto-antibodies for anti-nuclear factor, dsDNA and Smith antigen. A positive ANA, however in itself, is not diagnostic as it may be positive in other connective tissue diseases.

    Anti-dsDNA and anti-Smith antibodies are highly specific for SLE and often are confirmatory of the diagnosis if present.

    Does not state you have to show anything else in the blood work for the diagnosis. So why is it you have to if your RNP is high? Why can't they still at least confirm a connective tissue disease is present if you have antibodies to the disease? All websites say a positive ANA itself is not diagnostic, but I cannot find any website that says a positive ANA and the autoantibodies both are not diagnostic. And this one site states the reason an ANA is not diagnostic for SLE is just because it occurs in other AI diseases or drug induced Lupus, & and in low titer in healthy people.

    What I want to know is why certain doctors believe different and why it's not possible to have an autoimmune disease if your ESR isn't high. Is it the younger generation being taught this or something they just put in their own heads? And this issue with false positives. How does a false positive occur if you are getting the same exact results at every lab you go to.

  3. #23
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Information on Gastroperesis (known as GORD)

    What is gastroparesis?

    Gastroparesis, also called delayed gastric emptying, is a disorder in which the stomach takes too long to empty its contents. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls the movement of food from the stomach through the digestive tract. Gastroparesis occurs when the vagus nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract.


    The digestive system

    [Top]

    What causes gastroparesis?
    The most common cause of gastroparesis is diabetes. People with diabetes have high blood glucose, also called blood sugar, which in turn causes chemical changes in nerves and damages the blood vessels that carry oxygen and nutrients to the nerves. Over time, high blood glucose can damage the vagus nerve.

    Some other causes of gastroparesis are

    •surgery on the stomach or vagus nerve
    •viral infections
    •anorexia nervosa or bulimia
    •medications—anticholinergics and narcotics—that slow contractions in the intestine
    •gastroesophageal reflux disease
    •smooth muscle disorders, such as amyloidosis and scleroderma
    •nervous system diseases, including abdominal migraine and Parkinson’s disease
    •metabolic disorders, including hypothyroidism
    Many people have what is called idiopathic gastroparesis, meaning the cause is unknown and cannot be found even after medical tests.

    [Top]

    What are the symptoms of gastroparesis?
    Signs and symptoms of gastroparesis are

    •heartburn
    •pain in the upper abdomen
    •nausea
    •vomiting of undigested food—sometimes several hours after a meal
    •early feeling of fullness after only a few bites of food
    •weight loss due to poor absorption of nutrients or low calorie intake
    •abdominal bloating
    •high and low blood glucose levels
    •lack of appetite
    •gastroesophageal reflux
    •spasms in the stomach area
    Eating solid foods, high-fiber foods such as raw fruits and vegetables, fatty foods, or drinks high in fat or carbonation may contribute to these symptoms.

    The symptoms of gastroparesis may be mild or severe, depending on the person. Symptoms can happen frequently in some people and less often in others. Many people with gastroparesis experience a wide range of symptoms, and sometimes the disorder is difficult for the physician to diagnose.

    [Top]

    What are the complications of gastroparesis?
    If food lingers too long in the stomach, it can cause bacterial overgrowth from the fermentation of food. Also, the food can harden into solid masses called bezoars that may cause nausea, vomiting, and obstruction in the stomach. Bezoars can be dangerous if they block the passage of food into the small intestine.

    Gastroparesis can make diabetes worse by making blood glucose control more difficult. When food that has been delayed in the stomach finally enters the small intestine and is absorbed, blood glucose levels rise. Since gastroparesis makes stomach emptying unpredictable, a person’s blood glucose levels can be erratic and difficult to control.
    Last edited by Peridot20_Gem; 05-11-2011 at 04:52 PM.

  4. #24
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Quote Originally Posted by giggle View Post
    OMG!! I have gastroperesis! I have been going to the doctor for MONTHS about this... she just keeps saying take the laxatives and we will see. She says nothing more. I keep trying to tell her, I am not constipated, the food just never leaves my stomach and sometimes when it finally does, it hurts. My digestion just totally stops and nothing happens. I am so angry that she hasn't come up with this as an option yet. Its been a really frustrating problem because nothing at all fixes it. It seemed for a while that sticking to a gluten free diet helped a bit but I have maintained the extra fiber and gluten free diet and am right back at the drawing board. I am sick of feeling like I am horribly full all the time but have hunger pains. It all feels very wrong.

    I am really cranky with doctors recently. How can they take back a diagnosis! If they aren't certain they shouldn't diagnose in the first place, or at least warn that they are tentatively diagnosing at this stage. I feel terrible every time I go to the doctor because there is just sooo much wrong with me and I feel like I just sound like an idiot. You need to change doctors if he wont listen. Even if you have to make appointments during work. And dont tell your husband your diagnosis has been taken away from you... people without lupus rarely understand and seemingly look for any way to dismiss the disorder. Having your partner dismiss your condition is not pleasant, trust me.
    Hi Giggle,

    I'm savage mate been suffering for ages and i'm seeing my GP, half the stuff i've listed i have now and some of the diseases that go with it, I hope the info helps mate for when you see your doctor.

    Hugs Terri xxx

  5. #25
    Join Date
    Apr 2011
    Posts
    156
    Thanks
    0
    Thanked 9 Times in 6 Posts

    Default

    That kind of contradicts what I was told. My gastroenterologist seems to think the gastroperesis, where the food sits in my tummy too long, causes or makes the acid reflux disease worse, not the other way around.

  6. #26
    Join Date
    Apr 2010
    Location
    Mackay, Australia
    Posts
    272
    Thanks
    84
    Thanked 108 Times in 68 Posts

    Default

    Hey Maryalice

    There is a criteria for lupus and I think the general opinion is that you need to have presented with at least four clear symptoms of the disease before you can be officially diagnosed. It may or may not include ANA. It was easy for me, when I went to the rheumy for my diagnosis, I had the lupus facial rash, joint pain, fatigue and had just come out of hospital from a complicated caesarean which followed with a pulmonary embolism etc. My blood work came back positive for anything and everything to do with lupus so my diagnosis was secure.

    An interesting aside... my ESR is often times borderline, nearly normal. However, upon CT it was discovered I had wide spread and potentially worrying GI inflammation and chronic sinusitis. So with so many areas of my body inflamed, why is it that my ESR could be interpreted as pretty much normal and displaying no cause for concern?? I don't know... but its definitely something to think about and consider in a diagnosis. If you were to ask me or my GP whether going by ESR for diagnosis is a good method, you will definitely get a great big no. I would have been stripped of my diagnosis ten fold.

    They key here is... you need to keep trying different docs til you get one who suits you. Also remember... lupus isnt a condition like others. Diagnosing diabetes is a blood test, diagnosing a broken leg is an xray... lupus is pretty much a name given to a group of symptoms in which two people may display completely different groups of symptoms.
    What are your symptoms Maryalice? Did you bring proof to the doctor? If you want to stick with this doc then think about making him up a folder of evidence which you keep on you and present to him each time he 'forgets'.

    And I dont know if they were safe... she had me on 'movicol' drink and 'senna' tablets. They made me feel even more bloated and caused more pain and did nothing at all to relieve. At times it can be up to a week before I go to the bathroom. Getting onto a gluten free diet made a slight difference for a while. I stopped drinking so many smoothies and had a pizza and now I am back at square one. This week, starting tomorrow, I am going to try a 'liquid' diet... soups, smoothies, stews, yoghurts etc. to see if there is any improvement. For myself because I am sick of feeling like I swallowed a basket ball and to present some evidence to the doctor that it isnt my bowels.

    Terri... you are the info queen I am constantly learning something new from you.

  7. The Following User Says Thank You to giggle For This Useful Post:

    steve.b (05-11-2011)

  8. #27
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    Giggle said it very well. There is no test for Lupus. Lupus is a disease where the doctors rule out things and once the other reasons for all the symptoms are ruled out then a Lupus diagnosis can be made. I too have a borderline ESR but my CRP is off the charts. Different bodies different symptoms.

    I am adding the link to the thread explaining the criteria needed to Diagnose Lupus. Hope it helps

    http://forum.wehavelupus.com/showthr...upus-Diagnosis
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  9. #28
    Join Date
    Apr 2011
    Posts
    156
    Thanks
    0
    Thanked 9 Times in 6 Posts

    Default

    My symptoms okay, I'll try my best: severe fatigue 14 yrs, muscle pain mostly in legs, spinal pain, myofacial pain in shoulders, pain/weekness in my fingers, hip pain, widespread muscle weekness, muscle spasms, burning, widespread tingling, widespread shooting pains, numbness in back/neck, feet/legs, past episodes of psychosis, anxiety, depression, mouth sores (canker sores), lip ulcers that precedes flares, chronic nasal congestion/dryness/bleeding, nasal swelling, post nasal drip, past bronchitis, IBS (which my rheumatologist talked like was a crock too), GERD, barrett's esophagus, gastrititis, hiatial hernia, ulcers, interstitial cystitis, past kidney stones & hydronephrosis, scarring on one lung, had chronic inflammation of uterus before it was removed, UTI's (bladder & kidney's), vaginal infections, frequency, pelvic/rectal pressure, pelvic surgeries, bladder is abnormally shaped, severe congenital issues, chest pain, PVC's, bigeminal rhythms, calcification in my aorta, high cholesterol, shortness of breath, low white blood cells on occassion (lymphocytes) and I wasn't sick with any cold, positive ANA, positive RNP, I've had low amylase & lipase enzymes, elevated liver enzymes, low b-12 which is back to normal on treatment, low vit d, gastroperesis, diverculitis, mildly enlarged gallbladder, migraines, joint problem in my neck, pins and needle sensations, I've had purple spots on my legs from being cold, hives, red scaly spots around eyebrows, hair line, and on scalp (that cleared up), I've seen a butterfly rash on my face when I was using tanning beds, the sun makes me nauseas, more fatigued, and gives me horrible headaches, red pinpoint blood spots on skin, acne, impetigo, mild sleep disordered breathing, sleep problems, weight gain, exercise intolerance, and believe it or not I could keep on going. I do present the 4 of 11 criteria for Lupus, but the old bat said only thing I have wrong is fatigue, and muscle pain, and chose to blow everything else off like nothing, and yes she knew about most of this, I had to fill it out on a sheet prior to seeing her. I am through with rheumatologists and nothing is going to change my mind about that, even if the disease is there. I feel no need to fight over the fact of am I really sick or not when I know I am.

  10. #29
    Join Date
    Nov 2010
    Location
    Philadelphia, PA
    Posts
    322
    Thanks
    120
    Thanked 86 Times in 59 Posts

    Default

    Wow Maryalice, thats alot of pain and suffering you are going through there. Are you on any type of medications for any of your symptoms. Im no doctor but I have alot of the symptons you mentioned here (as well as alot of us) some of it could be due to fibromyalgia. Alot of us here have both. Hope you could reach a diagnosis soon, and receive the necessary treatment to aleviate your symptoms. Doctors SUCK most times.

  11. #30
    Join Date
    Apr 2011
    Posts
    156
    Thanks
    0
    Thanked 9 Times in 6 Posts

    Default

    Well like I said before, things could be so much simpler in determining than doctors make it. Question is do I have fibromyalgia, something without explainable cause, which no matter what I do, I'll never overcome, or is it autoimmune disease, and with treatment, at least I could get some relief. How I respond to treatment will pend the answer to that for me, and I honestly hope it's not just fibromyalgia. As selfish as it may be, I don't want nor think I could remotely stand 50 more years to the 14 like I've already had. I want my energy back and I want to live pain free enough that at least I can stand it.

    I am on stomach medications, Vit D & B12, neurontin, ibuprofen, and toradol. Toradol is the only thing that really gives me relief but I cannot get injections that much. What replaces that? I can't take narcotics, all they do is make me vomit and make my tummy hurt worse, lortab I puked up blood with, the ibuprofen hurts my tummy and kidneys, the Toradol caused me to get a kidney infection. Muscle relaxants don't help. Ultram is not strong enough. Where's the answer? And the fatigue, how are you supposed to control that unless you go on some stupid ADHD medication that wires you for sound, so it can send you back down crashing a thousand times as hard, been there and no thanks.

    I have been going to a doctor continuously for 11 yrs and I have failed to improve at all. The pain is by far worse now that my spine hurts and I have all this neuropathic pain. I was never able to get an MRI on my spine, it's blamed on muscles, though the pain is in my spine, not my muscles. I am waiting on a brain mri for possible MS and for my congenitive issues, but I will be surprised if it shows anything. My neurologist thinks it's autoimmune and so do I.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •