I’ve been “sick” for YEARS with no diagnosis, help pls.

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I can begin by telling you a bit about myself. I’m a 21 year old female and everything began in my stomach/abdomen. At 13 I began having VERY painful and irregular periods (so painful I’d have cold sweats, faint, and become physically disabled for days at a time). After multiple doctor visits for that, I was assured everything was okay and it was only my bodies reaction to the unbearable pain. Years went on and then i began having abdomenal pain which i brushed off because after going to the doctors yet again I was assured everything was fine. Another couple of years passed with constant pain and irregular periods and new symptoms began to show after I had my child in 2016. I began to vomit nearly everyday, I went from a healthy weight of 130 to 87lbs within a span of about 7 months, my stomach began to get visibly distorted, bruises will not go away, there are darker circular (well, kind of circular) on my back, buttox, arms, pelvis, and legs. My left ear has also been blocked for quite some time (a month), i also have a swollen lymph node below my left collar bone and my stomach is mostly distorted on the left side. This past weekend i also had unbearable chest pain which had me in tears and landed me at another hospital yet again which they assured me yet again my tests (cbc, chest xray) came out okay. I also have been “blacking out” nearly everytime i stand up and need to sit down again for a minute before i continue. I also have very dark circles around my eyes, pallor, and shortness of breath even if i walk 5ft. I can not take it anymore. I was wondering if anyone had any similar symptoms and got diagnosed and what tests i can request. Thank you!

Tests ive had:

Upper endoscopy

Colonoscopy

Cbc

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9 Replies

  • Posted

    I urge you to join specific fb groups called MALS Pals, renal nutcracker support group, gastroparesis.

    For our horrific mostly downplayed journey, they had the best advice, could compare, I educated myself enough to read old imaging (please always have everything including imaging as a copy) and found one of the physical issues. It took 3 years and the solution is not an easy one, BUT nothing is worse than being played down and dismissed.

    First step was a gastroparesis diagnosis (which doesn't tell you why it is happening), easy nuclear transit study, and look for reasons like MALS/Dunbar, SMAS/Wilkie and the likes.....

    Best of luck!!!

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    • Posted

      Thank you so SO very much for this advice. To be honest I have not one copy of anything and that never crossed my mind. Definitely going to call Monday to get copies and do A LOT of research. I’m also happy someone else understands how dismissive some can be, especially because of my young age and it’s horrific because I know my body and generally I used to be very healthy aside from a light case of asthma and painful cycles. I was always involved in everything and now its like I can’t do anything.

      Thank you again and I wish you the best of luck and send many blessings your way!

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    • Posted

      Oh I hear you.

      My girl is 16, starting this life disabling vomiting, nausea, localised abdo pain and the likes with end 13.

      The dismissal of "pain disorder" "teenagers tough time, hormones", "school absenteeism" was for many a first line diagnosis just because basic tests were "normal" and being female and teenager. Oh yes, and maybe a cyst, females are so sensitive feeling cysts..... Uhm, no,only functional normal cysts left and right , now no cyst thanks to continuous pill. Duh.

      I found nutcracker in MRE and from there the compressed (but still 4mm open, hence not classic) SMAS and with duplex ultrasound MALS as they often go together.

      Also she is hypermobile and has a lumbar lordosis, this is absolutely bad anatomy.

      I had to push for direction, but as ignorance is high, was happy to find out via fellow sufferers where to go and to persist.

      (One doc accusing of IBS and just take 10Movicol a day......)

      There are so many rare constellations and also many diseases not known yet, that the emotional draw is opened far too prematurely.

      Exclusions (if correct) are also peace of mind.

      Just your workup has many many empty spaces still.

      Lot possible of physical issue.

      We also did do naturopathic consults and acupuncture, but it did not even help the symptoms....

      Best of luck!!!!

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  • Posted

    Hi blp423

    You don't mention you have had a complete blood test and a vitamin and mineral blood test..vits such as vit d if low will cause stomach problems also vit b12 if low will cause problems such as fatigue and shortness of breath...I suggest you see your doctor and ask for these blood..you will have to ask specifically for the vits and mineral testing as they are not included in full blood count tests....

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  • Posted

    Try going for more medical check up and pray for a Miracle. The lord will heal you soon.
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    • Posted

      I had three and a half months of no diagnosis and negative tests.  No doctor could help me. I sank into despair, panic and anxiety which tortured me every day along with my gut symptoms.  I strongly believed I would never be diagnosed or that I had a serious condition that had been missed and was too late to fix.  I prayed every day for a miracle diagnosis that was simple and non threatening. After eight trips to different doctors, one of them finally diagnosed me with IBS.  I got my miracle diagnosis.  Hope eventually broke through for me even in my darkest moments. My panic, anxiety and gut problems significantly improved.
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  • Posted

    So sorry for your suffering. 

    Have you been tested for SIBO? Small intestine bacteria overgrowth is a common occurrence with numerous symptoms. I use to bruise all over for no apparent reason. Turns out the overgrowth of bacteria causes inflammation that doesn't just stay in the gut.

    I've been sick since 1973. I started out with what seemed like allergies and eczema, But I've had numerous tests that say otherwise. 

    As I got older and had kids I added more symptoms. Chronic fatigue from eating most food. Migraines from anything with fiber. Then the veins popping all over my body and I started to feel them pop. I could see them rise up like a worm under my skin. 

    After daughter 3 in 1981 I went down to 99 pounds and started getting chronic eye infections. I had no idea what was wrong. I tried all kinds of natural products but usually felt worse. 

    Finally in 2001 I found a doctor in Southern California that tested me for bacteria in my stools. He put me on 3 drugs. Antibiotics work for a few months and I'm usually better if I take them longer than the average person. I take an anti parasite drug and anti yeast drug. I can usually eat a few more foods for a few months. Unfortunately it's hard to cure but at least I understand it better. 

    In 2008 I got worse with added stress causing more acid and my weight went to 94 pounds for 3 years but I felt well enough to work because I kept to eating just 6 foods with no cheating. 

    Another round of different drugs in 2013 I was able to eat again for 6 months. I added lettuce to my rice and chicken with a homemade dressing and put on 12 pounds from eating the salad 3 times a day. Nothing else. Then the bacteria overgrowth was back. 

    Yes I tried all the natural products recommended over a 30 year process. Finally I just couldn't take the itching from head to toe so I take Xifaxan everyday. I'm on a new shot that is a biologic since February but it takes months so no help yet. 

    If you don't have insurance then you can look up a test that you blow into about a dozen self seal bags and mail them back and they can check you for methane or hydrogen. 

    SIBO can cause constipation and diarrhea. But I had no idea it was causing all my other problems too. 

    Do research online. Don't follow recommendations because you can get worse. Be careful. What works for me...butter, cream rice and poultry may not be good for you. Eliminate a food type if you want for a week or more then add it back once and wait 3 days. I started with nuts. Which were a big problem. Then most fruit. Then most grain. 

    My doctor made me a list to try first. 

    When the bacteria was severe in 2016 I gave up everything but vanilla Haagen Dazs and got gastritis. That's when I started on ranitidine until it calmed down. Then back on Xifaxan. My gastroenterologist has had me on them for 11 months and my weight is up to about 106 pounds. 

    I hope you realize that we know more now than in 1973 and they will know a lot more each decade. 

    Also what I have is considered auto immune and some doctors believe it's somewhat hereditary. They told me certain people are more susceptible to overgrowth. Two of my sisters have some symptoms and one is sicker like me. My symptoms showed up at the youngest age. 

     

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    • Posted

      Yes I've tried fermented foods. I blister from them. My doctor recommended them and many other drug free ways but bad reactions. Been trying everything for 30 plus years. 

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