Discussions By Condition: I cannot get a diagnosis.

constellation of symptoms, could they be related?

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: lyraonyx
  • June 18, 2008
  • 10:44 PM

I'm a 24 year old woman with several symptoms and several chronic diagnoses that I think may be related as well as some undiagnosed symptoms. I've done some research on my own but I'm not finding anything particularly helpful. If someone could give me some ideas on what to look for that would be helpful.

Here's my symptom list: Obesity since puberty, quite bad. I'm a good 200 pounds overweight. Irregular menses, infertility, (have been diagnosed with pcos). Debilitating back pain caused by scheurmann's kyphosis (wedge-shaped disks). I'm quite tall for my family... 6 ft. Don't know if that could be considered a symptom but i'm putting everything down. I have a lot of gastrointestinal problems, most of which are as of yet undiagnosed. I have reflux CONSTANTLY, have had since at least age 5 along with odd bowel problems. If i don't have diarrhea I'm constipated and it's a different color/consistency every time. Sometimes it's two in one and there will be a clear line where it changes. I have bouts of sharp stomach pain usually followed by diarrhea. all that is undiagnosed. Also I have chronic recurrent sinus infections, sleep apnea, tinnitus, and I'm totally lethargic. Takes all of my energy just to get out of bed.

then there's the scariest symptoms of all. I have random grey-outs that affect my vision, hearing, and temporarily paralyze me. I'll feel my heartbeat in my head and then everything goes. I haven't actually passed out yet but they seem to be going in that direction. Also my husband noted me doing weird eye movements during one of these grey-outs. He said my left eye jerked off the side while my right was steady. Lately this is accompanied by headaches, but they're not severe like migraines. I grey-out when I yawn sometimes too.

For my psychological symptoms, I also have severe borderline personality disorder and everything that comes with it (minus the drug / alcohol dependencies). My body is a mutilated mess from my... episodes for lack of a better word, and I am severely depressed and even suicidal.

the confusion and pain related to my physical health is certainly not helping me emotionally and I'm trying to make an effort to get my life back under control. I want to go back to finish my music degree but I can't really do that with my health spiraling out of control like this. Any clues or advice would be appreciated. Just don't give me the "you're fat: lose weight and all your problems will magically disappear" lecture. I've heard it before and most of these problems started before I was heavy. Also I lost 85 pounds four years ago and that's when my grey-outs started. not to mention losing weight with all my other problems is an uphill battle to say the least.

Thanks,

Lyra

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5 Replies:

  • For the grey-outs, you need to speak to your doc and see about getting a "cardiac event monitor", which is kept for a month or more and used when symptoms are present. The best one, especially if your events are fairly frequent, is one that is worn continuously and a button is pressed to make a recording when you have symptoms.....these usually go back in time at least 20-30 seconds to catch the start of the event....IF it's heart related. Women often have episodes of a rapid heart beat that can cause your symptoms, but you must be properly diagnosed. These rapid heart rates are usually benign, not an indication of heart disease. It does sound like this could be your problem....but if it is, it's unlikely that it's caused by coronary heart disease and is often easily treated (there are both meds and actions that can be used to slow the heart beat, but both require a doc). There could also be nothing with your heart, but could be "referred" symptoms due to your reflux. If you have difficulty swallowing, all of these symptoms can be due to food stuck in your esophagus. SEE YOUR DOC and insist on follow up testing!! For the rest of your issues, PCOS, obesity, reflux, bowel problems, my recommendation would be to check out one of the better low carb diets. Seriously. Atkins is fairly restrictive in the 1st 2 weeks (or longer if you desire), but it's actually a very good diet for most of your issues. I personally follow Protein Power and think it's an excellent program. I eat only home-cooked foods, mainly meats (meat/fish/fowl) and veggies (no root veggies). I keep dairy to a minimum, even though I'm not sensitive and I eat no grains. Check out web info on "leaky gut" and grains. You do not have to be gluten intolerant to have problems with grains, especially the amounts found in our diets. There is lots of evidence too that low carb diets help with insulin resistance (and if you have PCOS you are at least a little insulin resistant), prediabetes and diabetes. If you're interested I can post lots of links, but just go to PubMed and do a search on Eric Westman (researcher at Duke). Also do a google search on Dr Mary Vernon, Dr Richard Bernstein, Jonny Bowden and Regina Wilshire. (Regina's hubby is a fertility expert too)MANY people find complete resolution of reflux on low carb diets. As insulin resistance is improved PCOS symptoms are often relieved. It does take some planning, but there are many excellent web sites and books to help you out. (The South Beach diet is, in my opinion not a good one, mainly because of the emphasis on low fat and increasing grains.)
    CindySue54 32 Replies Flag this Response
  • I have a lot of your conditons too (PCOS and BPD) so sympathise ((hug)). I was reading an Australian study done on PCOS the other day and apparently most of us (over half of us) are not given much in the way of facts at all about this illness by our doctors. Are you fully aware of all the issues this illness can cause? eg Your obesity is probably due to the PCOS. You have a much higher risk of diabetes, heart disease, stroke etc. so do need to attempt to keep weight down to try to lower risks. I myself find that no diets work for me (very very frustrating) except LOW CARB along with low calorie ones. (Low calorie for me alone just dont seem to work). (I even gain weight with those diet shakes!) I know you hate to think about your weight etc but if you havent done so already, it may be good for you to see if you can go and get a dietian to work with you.. develop a diet for you in view of you having the PCOS. I'd just hate for you to end up with even more health issues due to that, you need to try to prevent more issues happening, loosing weight is a preventative thing, thou it wont fix your current issues, it still is a very good idea. Weight problems.. also dont help one to feel great about oneself (hence probably dont help depression much either). What's being done about your BPD?? Have you had DBT for it?? (by my own research..Ive found this therapy is the most recommended form for BPD patients... Im going to be starting this form of therapy soon.. im just waiting for the psychologist to contact me). Is the BPD causing you to "binge eat?" .. BPD causes binge eatting and also starving (I do both at times). BPD usually occurs with other mental health issues.. in your case it sounds as if you have depression on top of this.. If you arent being so already, you should be being treated for depression. (Im suicidal sometimes with the BPD..but dont currently have depression... from your post, it is obvious you also have that too so you need treatment for depression). Are you being treated for depression??? (ive got more to say.about other stuff you said.. but will do another post for it in case i loose this one).
    taniaaust1 2267 Replies Flag this Response
  • Also my husband noted me doing weird eye movements during one of these grey-outs. He said my left eye jerked off the side while my right was steady. That's called Nystagmus I think. CausesThe cause for pathological nystagmus may be congenital, idiopathic, secondary to a pre-existing neurological disorder or may be induced temporarily by disorientation (such as on roller coaster rides) or certain drugs (alcohol and other central nervous system depressants and stimulants, such as lithium salts, phenytoin and ecstasy). above quote is a part from from http://en.wikipedia.org/wiki/Pathologic_nystagmus Your diarhearea and constipation COULD be something like irritable bowel syndrome. IBS can feature in different kinds of illnesses including neurological ones. I suggest trying probotics for this and something like metamucil or another fibre supplement daily or twice daily..which will help to regulate you. (I have IBS myself and those things have really helped my bowels a lot). I also wonder seeing you have the sinus issue going.. if you could have food intollerance or allergy issues going too.. That could also cause abdomenal pain and other symptoms. Chronic sinus issues could also be actually be something like a toxin producing staph in your nose, can cause same symptoms as sinus issues (most doctors do not know about this.. I read a lot of research). I suggest getting your a nasal swab done. (something like this could make one who's health isnt already good.. lethargic etc).
    taniaaust1 2267 Replies Flag this Response
  • I did have to wear one of those cardiac monitors for a day, not a month. It didn't reveal anything telling, but my mom has an arrythmia that wasn't diagnosed until they had her wear a monitor for a month so maybe I just need to wear it longer (ick... the sticky was bad enough from 24 hours. I won't have any skin left after a month! :P) As far as my BPD goes I did try DBT but it wasn't helpful for me. It only triggered more self-injury episodes in my case. But I don't think that's common. Most people seem to really benefit from it. I just prefer individual therapy as I have major trust issues with people of the psychological/medical profession. I've been physically abused by several "doctors" in my past - part of what triggered the bpd i think. Currently I'm in therapy and it seems to be helping a little. I just have so much extra emotions that I don't know what to do with :P Frustrating. Also I have looked into several diets, none of which i've had a ton of success with. I lost some weight medication a few years back, but I had to quit taking it due to the kidney problems it caused. Lately my depression has been so bad I'm having trouble even just living my day to day life. That's the big reason I haven't been attempting to diet lately. It's a struggle to just stay alive let alone try to change my diet. I'm trying to get my mental health a bit more stable before I worry about that. Unfortunately the weight doesn't help my confidence and makes even more guilt for me to deal with... I'm already buried in it. It's a vicious cycle that I'm really struggling to break.Thanks for the helpful advice! I'll talk to my doc about what you've suggested as soon as I can. lyra
    lyraonyx 2 Replies Flag this Response
  • Some possibilities: Cushing's syndrome-- this is associated with PCOS.Celiac disease (gastro issues, infections) I looked up your spinal issue & couldn't find a syndrome that describes you, but maybe a trip to a geneticist wouldn't hurt.
    aquila 1263 Replies Flag this Response
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