Discussions By Condition: Medical Errors

Enough Already!!!

Posted In: Medical Errors 13 Replies
  • Posted By: almostanurse
  • December 9, 2006
  • 06:17 AM

My health has been deteriorating since 1994. I have drs that listen (finally), but still seem to have no better clue than the ones that didn't give a *%#! what I thought might be going on. My symptoms could be any number of things, and believe me, I Know! I read and research, hence my handle.;) I had a very, verY, veRY, vERY, VERY(!), bad experience (see - That's why it's called a practice) and as a result, am extremely proactive in my health care. That said, I don't know what the ***l is going on! I have symptoms upon symptoms in every system ie- endocrine, nervous, immune. I have a pituitary tumor, calcified thyroid nodule, blood sugar "issues", and all the symptoms of hypothyroidism, yet my hormone levels and other endocrine related tests are always normal. I have widespread neurological, skeletal and muscular pain, typing is getting especially difficult; but a lumbar emg only showed the beginnings of nerve damage on one side and I lost my insurance before I could have the cervical. My immune system isn't, so I'm always sick, on top of everything else! So far I have been diagnosed with chronic sinusitis, chronic fatigue immune dysfunction syndrome (cfids), fibromyalgia, hypertension, osteo arthritis of the spine, hips and knees, pes cavus(high arches), curvature of the spine(no, not scoliosis), endometreosis, uterine fibroids, sleep apnea, borderline diabetes( Iknow, There's no borderline.), and various mental crap- anxiety, depression, stress...Helloooo, any normal person would be in a padded cell by now. Luckily that's one problem I don't have. HA-ha. I have had 4 laporoscopes (3 for the endo and 1 for a tubal pregnancy), a lap-coli(gallbladder), an appendectomy, tonsillectomy w/a uvuloplasty(sleep-apnea), lymphdectomy, and 2 c-sections (the last with a tubal ligation). I have had every kind of scope, scan and poke, (well except for a spinal tap - shiver - which I hope I never have to have). And to make matters worse, I"M ADOPTED!!!! I have no medical history. I fell like a mystery, wrapped in an enigma, smothered in KFC Chicken Gravy. Wow, it feels good to vent!!! Any help or suggestions are greatly appreciated. I am reading about celiac disease right now and am finding it very interesting, as well as a possible contender; "And the nominees for Jane's medical condition are..." I am glad I have found this forum. Being sick can be a very lonely and isolating experience, and when there's no definite diagnosis, you can't even join a support group. Although I guess I could go a little "Fight Club".
Jane

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13 Replies:

  • Celiac does sound like a good contender. Soy, corn, milk, potato, are also fairly common sources of food-triggered auto-immune disorders, but there are over 700 known foods that cause random symptoms of random severity. This is probably why its almost never diagnosed, but it should probably by the doctors first thought when a 'typical' condition doesn't respond to typical treatment!Gluten alone causes an immune reaction in 1 out of 7 people, but only 1 in 100 can qualify for a 'diagnosis' either based on antibody ratios or intestinal damage. Only 1 in 4200 will actually get that diagnosis from a doctor (in America). You may not know specific family history, but obvious genetic markers can still give clues.. For example, Celiac would be rather uncommon for Africans or Asians, but milk intolerence would be sky high. It seems like Northern Europeans are the hardest hit by the rest, though, so fair hair and green or blue eyes would probably triple your risk rate w/ gluten, corn, and soy.
    Azaral 152 Replies
    • December 9, 2006
    • 08:32 AM
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  • Well, Jane… the nominees from me are…Syndrome X and insulin resistance syndrome (IRS) both usually go hand in hand and are often not diagnosed. Practically all your symptoms will happen with IRS if you have this, and the severity depends on the severity of the IRS and the time you have had it. IRS is involved with nearly all of mans syndromes, illnesses and disorders. Reason? IRS interferes with growth hormone and Insulin like growth factor -1 (IGF-1). Without enough of these hormones our bodies literally break down and fall apart.Have you had an ITT (insulin tolerance test)? It measures your growth hormone, this is ordered through an endocrinologist. A GTT will show if you have IRS, as long as the pathologist doesn’t decide to scrap your bloods for the insulin and only do the glucose readings like the pathologist did with me since my glucose readings were fine. Even if your glucose readings are normal, your insulin readings won’t be if you have IRS. From your post you sound as though you personally read your test result (I wish I had read mine back in 1994 and 1996; things would have been a lot different for me). My recent GTT read normal glucose, lowest “acceptable” level of fasting GH at .2 (I beg to differ) and insulin 18 when it should have been under 10, but I was told everything was find and just watch my weight!!!I am presently taking L-Arginine oral powder for my Syndrome X and IRS. This is an amino acid that stimulates GH and IGF-1 and though I haven’t been on it long my muscles have stopped wasting and I feel as though my body is coming back together. This power must be taken on an empty stomach three times a day.IRS can be reversed with the appropriate foods. I found an interesting site at www.mercola.com about our body not being able to cope with the modern diet and why. www.womentowomen.com also has some good easy to understand info on Syndrome X.All the bestAgape,Searchingsam.I agree with Azazel, look into foods that may be triggering immune responses also. EVERYTHING helps.
    searchingsam 54 Replies
    • December 9, 2006
    • 10:56 AM
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  • Thanks for the info. I've never heard of IRS or Syndrome X. My blood sugar problems began when I was 13. It is definately worth a look. I appreciate all the help and I love this site.:) Jane
    almostanurse 7 Replies
    • December 9, 2006
    • 04:32 PM
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  • Have you looked into genetic counseling? They can often sort out these symptoms better than interns, etc.What about the Multiple Endocrine Neoplasm disorders or Metabolic Syndrome?
    Anonymous 42789 Replies
    • December 11, 2006
    • 01:15 AM
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  • Unfortunately, at this time, genetic testing is not an option, as I currently do not have health insurance. I have had one test of my adrenal gland. The 24 hr urine assay. It came back normal so no MRI was ordered. I read about MENS and planned on mentioning it to my neurosurgeon, but he brought it up before I could. I actually saw him for something completely unrelated, but was sweating so badly it prompted him to wonder why. Imagine that, a dr that wants to know why you have a symptom, instead of just treating it. He's the Dr that found the pituitary tumor and I went to him about my back. Go figure.I've got a new one for everyone. Ever since, as long as I can remember, I have had what I call "fast-attacks". I start to feel weird, and know it's coming on, but I can't do anything to stop it. Then I get this metal taste in my mouth, like when you put a fork against a metal filling. then everything gets brighter, louder and faster. It seems to go on longer the older I get, but happens less frequently than when I was a kid. It's like a sensory overload. I've never met anyone else that has these and none of my Dr's, now or ever, know what it is. I'm wondering if it is related to my adrenal gland. Any ideas?
    almostanurse 7 Replies
    • December 13, 2006
    • 05:07 PM
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  • Hi Jane,When do you sweat badly? I sweat so bad that I have a pair of contacts because I end up with a pool of sweat in my glasses and can’t see a thing and I have to wrap a band around my head or I cop a mouth full of sweat. I’m like a tap. I only have to start moving to sweat.I have had on and off funny sensation in my mouth since I can remember; bit metallic, tongue on battery mild burn after eating something to hot like thingy, it has got worse these past few months as my IRS worsened. Always brought on by stress or even when I think briefly about something that could be stressful. I know funny tastes or sensations can often be a symptom in those suffering stress. It can also be brought on by medications. The tongue is a very, very, sensitive part of the body as it is for tasting, so I suppose it is naturally going to feel strange if our body is producing chemicals when stressed and we are going to feel it. Look how little a grain of salt of sugar we need to taste its presence. So may be the metallic taste is just the first sign of chemical like adrenaline building up in our blood system.Yes, it is nice to find a doctor that wants to know why, and to just throw meds at problems and leave it at that. I cant recall my adrenal glands being MRIed but I am sure they were when I first was suspected of having Cushings syndrome, but showed nothing and only focused on my pituitary gland as they thought they saw something. But apparently nothing nowhere. Hopefully the endo I see in January might be a bit more interested and helpful.Agape,Searchingsam
    searchingsam 54 Replies
    • December 14, 2006
    • 00:45 PM
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  • searchingsam, Thanks for you post. I sweat like you! Excessively from very little exertion. My "fast attacks", however, seem to be a quite different from what you described. I was told a long time ago that the metallic taste is probably adrenaline, but that ends my mouths' involvement. The rest of the attack involves other sense perceptions, lights are brighter, sounds are louder, and movement seems faster. In fact, the only sense that seems to not be affected is touch! My pulse and blood pressure have been normal when they have been checked during an attack, and my attacks are nothing like what I hear others say, when they talk about their panic/anxiety attacks. My "fast attacks" seem to be brought on by monotonous activities like sorting papers. Once I had an attack while driving:eek: , and it was raining. I think it was seeing the wipers going back & forth. I was able to get off the road without incident.Thanks again for sharing, and I will pray that you receive some answers in January.:)
    almostanurse 7 Replies
    • December 16, 2006
    • 08:30 PM
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  • I wish I could respond to so much, but I feel too crappy. I also have a numerous set of disabilities. I do not sweat until I am upright and the slightest bit of activity will bring on the over heating (not fever) and sweats. As long as I am laying down, I do not sweat.?????? Among other things(pain, fatigue-no I take that back-exhaustion,sleep disorder, severe myofascial muscle spasms, etc. etc., etc., etc!!!), not many people realize how miserable it is to be so hot( ans seatu and yet wear a sleeveless shirt with snow outside!!! There is sssoooo much I wish I could write but,I just don't have any energy left. Hope we all have a happier and healthier NewYear. Nanc
    Anonymous 42789 Replies
    • January 1, 2007
    • 04:15 AM
    • 0
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  • :) Greetings, so you've had enough already, well so have i. After reading your post, i've come to, what i feel is a solution. Life is full of examples for our observation, when a person finds something they can relate to, & we all do it, that is to say for instance, a jiffy lube shop. Pretend that you are a car, when a car breaks down, you take it to the shop. Once there, the mechanic tell's you what needs to be done to fix it. Cost is a concern, but we need to get it fixed, and we get it done, for safetys sake. Would you like an answer as to how to make yourself, good to go? If so, reply to this post, and i will provide you the tools to make it happen. Thank You!
    hogndog 426 Replies
    • January 1, 2007
    • 06:31 AM
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  • I just came on the internet to look up the symptom "bad taste in mouth coming from Stomach." Although, that is a understatment. The taste is rank!!!! This started a couple weeks ago and it happens when I'm sleeping, when I'm at work, when I bend over. I have no idea what this is and I have an appointment with my doctor on Saturday, January 27th. So, you all have the same symptom? Do you feel bloated as well. The taste is the worst taste I have ever tasted. I can bearly discribe it. What is it??? Plus, can people smell what I taste, because I cant tell? What do you use to stop it, because I'm all ready on prevacid for acid reflux, plus I have been taking liquid antacid on top of the prevacid this past week. What is the cause of this?
    Anonymous 42789 Replies
    • January 20, 2007
    • 06:40 PM
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  • possibly hiatus hernia.common,and fixable,though most people dont bother with surgery because it is so easy to manage.about half of people after 40 have hiatus hernia .look it up.
    Anonymous 42789 Replies
    • January 24, 2007
    • 00:22 PM
    • 0
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  • Greetings to you, hogndog. I am soooo past ready! If you have the secret to "Good to go", then...Bring It ON!!!!! Thanks,
    almostanurse 7 Replies
    • January 30, 2007
    • 06:24 PM
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  • Jane:Be careful with the alternative traps that might be set before you such as the person that has a fix for you. It will delay your diagnosis and put you in great danger. Keep your head forward and keep on your track as you will find answers. One thing I must say, the idea of MEN strikes me hard just as it was written in other posts and what your neuro said. Sometimes you need to llisten for the answer in unlikely places. I have very similar problems, medically as you do and am on a ten year track, disabled for ten years and trying to wade through this mess. If it were not for the Lord, I would not be alive or as strong emotionally to deal with as I am. These types of problems are very complex and mutli faceted which affects many systems but if you have on area of your body that shows something, go after it. Sounds like you have a pituitary tumor.which is a solid start to go after. There is a pituitary specialist in California name Theodore Friedman and you may want to go to his website at www,goodhormonhealth, There is great info there.Keep your focus and find the right help.Sincerely.A concerned person
    Anonymous 42789 Replies
    • February 3, 2007
    • 05:23 PM
    • 0
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