NO ONE KNOWS WHATS WRONG, HELP!!!

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I am a 15 yr old female and I have been having serious health problems for around six months now. I’ve been to the hospital three times and have seen just about every specialist including an orthopedic surgeon, a sports medicine doctor, a rheumatologist, an ENT, and even an oncologist.  About two weeks after having kidney stones, I noticed blood and mucus in my stool. This has happened three other times since then. I have a torn hip labrum, and ever since I got a steroid injection, things have gone downhill. It started with a mild fever and extreme aches and pains, almost like I had the flu. This didn’t go away, and then came the extreme fatigue. I’ve been sleeping for 17 hours a day, and I still feel exauhsted no matter what. I can’t do anything, because then it just tires me quickly. After the fatigue came the dizziness. I kept having dizzy spells and moments where I would feel like I was gonna pass out. My ears would ring and my vision would get blurry. It got to the point where I couldn’t walk. Since then it’s improved slightly. Then the stomach problems began. I woke up, vomiting in my sleep, with severe abdominal pain. I had complaining that when I ate, my stomach would hurt more for awhile. I went to the ER and they checked my gallbladder but couldn’t find anything. I’ts been three weeks and I have no appetite, and experience pain in my stomach. They’ve given me antiacids but they don’t work. I’ve had diarrhea once since then. But anytime I eat, I feel full after two bites. I also can feel a pulse in my stomach. Occasionally, I feel vomit coming up my throat. Also, my urine has been a very dark color lately. They checked my kidneys and they seemed fine. I also suffer from extreme joint and muscle pain and occasionally experience bad headaches. The most concerning thing however, is my shaking. I constantly have this tremor that worsens when I try and use my muscles, they have checked my blood sugar and it’s fine. It makes it hard for me to walk cuz I shake so bad. I also have lost about 25 pounds over this period of time. I haven’t been able to go to school in two months, and no one can figure out what’s going on with me. I’m desperate at this point. 

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4 Replies

  • Posted

    I am so sorry to hear this. You  definitely need to drink more water (no juices) asap and see a dietitian! That is the only person that can help you. 
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  • Posted

    Sorry to hear. We have some similarities with my daughter (15) 

    We went many times to ER with no result (only the acute basics are done though, like ultrasound, X-ray and blood chemistry) and as we notice to go on living, it can't be a total gut obstruction or so.

    But something is up.

    My daughter had a hip labra torn too (found in expensive MRI when her right hip hurt so badly).

    She has hEDS (hyper mobile Ehlers Danlos, a very lax connective tissue, hyper mobile hips, joints, stretch marks....) as we found out later.

    If that labra was making the hip pain when walking, we don't know.

    We only know that physio made it worse and that it took about a year to heal and now has no pain anymore when walking.

    We were also told to do a  local anaesthetic injection plus steroid into hip capsule, to see if immediate bettering happened (warranting surgery) and/or weeks later better (steroids, just inflammation). I refused as it was the lesser of her problems and pains.

    We did though go for 12 times low laser therapy onto hip. Again, I have no idea if that helped, but it couldn't harm. It might have just been the time of waiting that made hip better. ? Who knows.

    It took very long though, as said> a year.

    Now to the more important thing:

    Since we found after 2 years of massive suffering one major reason, it could also be, that her hip pain was due to vascular problems and formed collaterals helping with that hip blood flow, but not with other issues.

    Normal ultrasounds, gallbladder scans, bloods will not find anything if you have any one thing that my daughter has in multiple locations.

    That's why I mention it here again.

    Not to scare you at all.

    Just for a little note to your doc as two things do jump into my face as THE signs in your case.

    (The onset in teenage hood is typical, mostly females, as the hips grow, lumbar lordosis can happen and combined with a faulty connective tissue causing inside angles of ligaments, that are purely not good. Or after pregnancies, very typical)

    My girl has vascular compression syndrome.

    We can't even 'just' operate because it is a massive operation since in her case it concerns top to bottom.

    In other cases it is 'just' e.g. MALS, then it is a bit easier to be tackled

    MALS = median arcuate ligament syndrome

    It can be easily, not painful and non invasively found with a certain specific doppler ultrasound.

    It must be done by someone who knows how to do it though. You need to lie fully flat (supine) and exhale (hold it) and inhale (hold it) and the velocities (speed of blood) in coeliac artery is measured. Also aorta velocities and all velocities in standing to compare with. No normal ultrasound does look for that.

    Additionally an MRA or CTA can look, if a kink is in the coeliac artery.

    There are two things in MALS, so it can be that one of those two tests does not show a result: the artery itself being cut in by ligament or the coeliac plexus being cut in or playing havoc with artery, this nerve can cause nausea and dysautonomia like dizziness. Or both can be happening in MALS.

    MALS causes nausea

    causes vomiting, especially after food, stomach pain after food mainly. People tend to stop eating therefore.

    Try liquid and mash food. It is a bit easier.

    So does SMAS, superior mesenteric artery syndrome. Wilkie. 

    This is a bit further down, when actually the SMA (superior mesenteric artery) coming from aorta, is making a too acute angle and compress the duodenum underneath (and/or the left renal vein, too).

    People of course have problem getting solids through, the gastric emptying delayed, sometimes it can be so severe, that not even liquids get through.

    Unfortunately most tests can only see (Barium meal), if a total blockage is present, the stomach blown up, the 3rd part of duodenum blown up and no liquid going through this SMA/aorta clamp as duodenum completely pressed off. But sometimes it is mild. So that liquids and mash do go through.

    You can try this yourself, if you are better with protein shakes, with banana milk (if milk is ok for you) and apple sauce are better than anything very solid or hard to digest (meat).

    The boomerang:

    There is a fat pad around the aorta keeping the SMA away and letting left renal vein and duodenum through. meaning the less you way, the worse the symptoms become.

    We experienced that so often and I was happy to find cream cheese, that stayed down, (as said we have no milk protein or lactose problem), to 'fatten' my girl back up when weeks of no food wanted to stay down and since electrolytes were normal (I gave her electrolyte icy poles), were refused nutrition via vein in hospital!

    We saw two dieticians, unfortunately this was completely useless as they didn't know about MALS or SMAS and once they gave us FODMAP diet (didn't help at all, in contrary) and once they gave us 'emesis' diet meaning drink electrolyte sports drink or solutions from pharmacy (awful taste) and eat a lot of pasta...duh.

    My daughter has also anterior nutcracker, the left renal vein is completely compressed by this SMA and aorta, it was visible in MRI, but not noted, because....50% of people have a nutcracker phenomenon with no symptoms. Yet my daughter is highly symptomatic (abdominal pain, pelvic pain, nausea, vomiting, back pain, bit of red blood cells in urine) so it is nutcracker syndrome.

    A bit of stenosis and dilation of LRV is ok, it always depends on the degree of stenosis and ratio of stenosis to blown up appearance of rest of vein.

    In her case this causes dammed blood, looking for collaterals, but they are insufficient and pooling the blood in the pelvis, causing: pelvic congestion.

    So if you have not been specifically been tested for

    MALS (coeliac artery vascular, coeliac plexus problem)

    nutcracker of left renal vein (vascular problem)

    SMAS (superior mesenteric artery syndrome = Wilkie, duodenum problem)

    (you seem to have no pelvic pain, so that's good, but your hip made me wonder)

    this is not ruled out and hits so many young mainly female teenagers (explained above) and is highly under diagnosed.

    MALS can be corrected more easily than nutcracker.

    We for example have to try Aspirin to win time.

    Are on liquid diet

    and part time school

    and opioids to deal with massive pain.

    Also please an easy gastric emptying study can show, if the emptying was delayed, It does not tell you though as to why (my daughter has gastroparesis and colonic inertia).

    You need to see a good GI doc.

    In other forums you can find lists of GI docs in your area, who know about MALS and SMAS. I don't know where you are. Don't post it here please publicly, but there are others in same boat, hence you can be navigated into right direction and also exclusion is peace of mind, too.

    It is soooooooo hard.

    No gastroscopy will come up not normal with this diagnosis.

    A long way and no quick fix, but I tell you: any diagnosis is better than none.

    One doesn't look obviously sick and it is hard to explain to peer what is wrong with one, 

    we even got excused of school absenteeism, and she loves her school.

    got excused of 'psychological issues and wrong pain interpretation' or 'IBS'.

    It is none of that.  It was a long hard road to diagnosis and is now even a harder to walk to tackle, but at least these accusations do stop and pain management can continue since a diagnosis was made.

    My girl cannot go without 8mg/twice a day ondansetrone. 

    Have you had that?

    If no MALS or SMAS is found but gastroparesis, there are specific motility medications that can help the stomach to empty faster. (We tried 2 but with no effect)

    I hope though you don't have what my daughter has, at least not to that extend, but hang in there and please ask about those few possibilities and maybe you can join fb specific groups and ask your questions there.

    All the best!

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  • Posted

    Hi jules1212

    Have you had your vitamins and minerals checked. Vit D deficiency can cause digestive problems..also Vit B12 deficiency can cause extreme tiredness, dizzines, shaking and muscle aches and ringing in ears. Also to look for anemia. Due to the fact you are keeping nothing down and vomiting your body is being deprived of sodium and potassium and essential vitamins and minerals...do ask your doc for these blood tests...especially Vit B12 and associated B complex vitamins...

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