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Thread: list of what ails me

  1. #1
    Moderator jody's Avatar
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    list of what ails me

    1, nausea. sever rolling nausea that almost never stops.
    2, loss of hunger.
    3,muscle soreness.
    4, muscle weakness, and atrophy
    5,sleep problems
    6, huge tired. so big that it has ruined me more than even the accident that changed everything. I can't make this tired big enough and devastating enough to explain it properly. it is a huge tired.
    7, irregular heartbeat.
    8, vomiting.
    9, severe diarrhea,
    10, chills and sweating (so bad I cannot stand or more than a few minutes.)
    11,occasional low blood sugar.
    12, headaches.
    13, belly pain.
    14, this is the strangest. an occasional feeling of dread. a huge foreboding. I almost hate to list this one because that seems in your head, but it is a physical feeling. I feel it in my chest.
    15, I feel and electric shock when I take a deep breath. I feel the shock in my hands and feet. this started two years ago, when I was very deficient in vitamin D.
    16, anemia
    17, skin itch.
    18, low fever.
    19, vision change. my eye sight has gotten drastically worse over the last
    year or so. Id say it was age, but for some reason, it is worse when my symptoms are worse. some days I can actually see better, but recently those days are very few.
    20, enlarged liver.
    this is the most recent and hard to explain. an whoosh feeling in the back of my head. like a flush like the shock I get, but not at the same time.
    this is the newest feeling that is becoming a regular part of my day.

    I will say that it takes a lot to bring me to a dead stop. I get by and I get around with what I have until this hit me. this tired is so big that taking a shower and trying to get dressed is about as hard as it could be.

    recently, with the belly pain I have had a lot of kidney pain. I did have a kidney infection a month or so ago, but the kidney pain is still there.

    oh I almost forgot, I have passed out while on the toilet twice recently, and almost fainted a few other times, like trying to take a shower, trying to not throw up. this was from cramping pain which is in addition to the regular pain that never goes away, and is accompanied by profuse sweating, a sort of blindness, crazy heartbeat, hard and slow, then very fast, then black out.


    I had a recent scan that shows my gall bladder is ok.
    though it does show growths of some kind in it.

    this problem has been ongoing but recently, after having a blood clot, over the summer, and a bad uti with kidney pain, the symptoms are extreme enough to cause me not be be able to drive, walk, use my trike, get up or down stairs, .... this feeling feels unrelated to my injuries, but related to the belly pain.
    I have had all the tests for hepatitis, and they are negative.
    Most of these symptoms seem related and have gotten steadily worse over the last five years.


    Im grasping at straws here I guess, but really I can't be the only person to have ever had a problem like this, and I just don't think it is going to go away on it's own though, and I really don't know what else to do.
    Last edited by jody; 02-24-2012 at 11:52 AM.

  2. #2
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    Jody, to say I'm so sorry for your torture is terribly inadequate... but certainly heartfelt. I so hope all your documenting works to set off someone's light bulb.

    I of course have no idea what all those things together might mean, but I have experienced many of them (except the dread, irregulari heartbeat, and fever), although never all together like that, or so long term.

    The different diagnoses I have gotten to account for some of those things:
    · An intestinal parasite: cryptosporidium; giardia is another common one.
    · Mononucleosis with secondary non–viral hepatitis (my sleen sent my liver enymes crazy, although I had none of the hepatitis letter strains). Whichever organ is on my right side also just ached.
    · Hypotension, or orthostatic (standing) hypotension, if your blood pressure is normal sitting.
    · Cervical stenosis and hypoplastic posterior fossa (the hole for your brainstem, I think, is too tight).
    · I don't know the symptoms of hypertension, but I would check that out.
    · MS, lupus?
    · Have you been checked for Lyme disease, rickets, a couple of other things in that category? Do I remember your saying you had rickets? I know there are four or five such maladies that they tested as differential diagnoses for MS.
    · A doctor once tried to tell me I had fibromyalgia, but I think in my case that just was a lazy, cop-out diagnosis, did not even fit my symptoms. He was big on picking out the useless ones, although I kept urging him to grasp at some treatable straws (he never thought to test for the parasite, nor the hypotension.)

    I'm so wishing for you some medical miracles.

  3. #3
    Jody, I am going to get a test for adrenal insufficiency next week because of my abdominal pain. It catches many of your symptoms. Check it out here:
    http://endocrine.niddk.nih.gov/pubs/....aspx#symptoms
    For test, (cortisol lever) they need to draw blood soon after getting up in the a.m.
    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

  4. #4
    Have you had blood tests to determine how your thyroid is working?

    All the best,
    GJ

  5. #5
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by Random View Post
    Jody, to say I'm so sorry for your torture is terribly inadequate... but certainly heartfelt. I so hope all your documenting works to set off someone's light bulb.
    Same here as I received so much support from Jody during my medical crisis over the past year.

    Seems you need a complete blood workup, including nutritional?
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  6. #6
    In addition to what others have mentioned, I think it would be a good idea to check into your cardiac status - some of your symptoms (especially fatigue, dread experienced as a physical sensation in the chest, and irregular heartbeat) could be valve-related. Dread can also be a sign of thyroid imbalance (gjnl mentions thyroid, too).

    Remembering a couple of threads from last year, you've been diagnosed with MS and a low-grade hepatitis - some of your other symptoms can be explained in light of those diagnoses. Fatigue is usually a significant feature of MS, along with muscle weakness and atrophy, vision changes and sleep problems; liver enlargement/nausea/lack of appetite are common with hepatitis.

    Given this medical history, you're probably being hit with symptoms from several issues at once - but I think you need a very complete current workup to be sure. Your meds might be contributing to your symptoms, as well, and possibly need to be reassessed. Your neuro is so thorough that he might be a good place to begin the process of a thorough workup - with referrals, as needed.

    I hope you'll be able to get a good handle on what's going on soon. Keep us posted!
    Last edited by Bonnette; 02-24-2012 at 05:11 PM. Reason: addition

  7. #7
    Jus to throw this out there....have the doctors ruled out diverticulitis?

    I think this is what I am dealing with now. On clear liquid diet, antibiotic (bactrim), and plenty of misery. I have an appt. with gastro doc next wednesday.

    really hope you feel better soon.

  8. #8
    Senior Member flicka's Avatar
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    Quote Originally Posted by Bonnette View Post
    Your meds might be contributing to your symptoms, as well, and possibly need to be reassessed.
    Depending on your medications, your eyesight can definitely be effected. Several years back, I weaned off of valium and my next visit to the optrometrist showed my eyesight had improved. Not long ago I was prescribed a new pain drug and could instantly see a difference in vision.
    ____________________

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  9. #9
    jody,

    I of course don't know what is going on but would like to suggest how you might go about addressing the problem(s).

    The first step is to prioritize those symptoms that are most critical and require resolution as soon as possible.

    1. Severe diarrhea and vomiting. This alone could be causing all the other symptoms that you describe, including muscle weakness and aches, fatigue, irregular heart rate, headaches, and belly pain. You are losing electrolytes (ions such as sodium, potassium) and may be dehydrated if you are not drinking adequately. The question is what the cause is. There are a myriad of causes of diarrhea. The first and most common cause is viral infection. You don't mention a time course for the symptoms. It would be unusual for an influenza virus to last longer than two weeks. If you have diarrhea or vomiting lasting longer than two weeks, you should get worked up for some bacterial infection or other cause (such as diverticulosis) that may be causing diarrhea. This includes getting stool sample cultures to look for infections and parasites. I know that this latter seems sort of far fetched but it is easy to check and worth ruling out.

    2. Chills and sweating. This suggests that you may be having a fever. Of course people with spinal cord injury and multiple sclerosis do get chills and sweats due to loss of temperature control. However, you should take your temperature and make sure that you don't have fever during the chills and sweats. If your white blood count is not elevated, this would argue against an infection. In such a case, you need to be tested for hormone deficiencies.

    3. Electric shock when taking a deep breath, down your arms. This suggests that your spinal cord is being irritated or compressed when you take a deep breath. This is worrisome. An MRI of your spinal cord is warranted, to rule out stenosis or compression of your spinal cord.

    4. Irregular heartbeats. Irregular or skipped heart beats may cause the feeling of dread that you talk about. You may have a valve problem, such as a prolapsed mitral valve. This is the most common heart valve problem that affects as many as 2-3% of the population and is most often discovered in people aged 20-40. Mitral valve prolapse aggravates dysautonomia, which may explain some of your other symptoms. A careful listen to your heart (for murmurs), an electrocardiogram, and a sonogram should rule out any valve problem.

    The loss of appetite, chronic fatigue, and feelings of dread are very likely to be secondary to whatever condition that you have. Get your eyes checked as well by an opthalmologist.

    Wise.





    Quote Originally Posted by jody View Post
    1, nausea. sever rolling nausea that almost never stops.
    2, loss of hunger.
    3,muscle soreness.
    4, muscle weakness, and atrophy
    5,sleep problems
    6, huge tired. so big that it has ruined me more than even the accident that changed everything. I can't make this tired big enough and devastating enough to explain it properly. it is a huge tired.
    7, irregular heartbeat.
    8, vomiting.
    9, severe diarrhea,
    10, chills and sweating (so bad I cannot stand or more than a few minutes.)
    11,occasional low blood sugar.
    12, headaches.
    13, belly pain.
    14, this is the strangest. an occasional feeling of dread. a huge foreboding. I almost hate to list this one because that seems in your head, but it is a physical feeling. I feel it in my chest.
    15, I feel and electric shock when I take a deep breath. I feel the shock in my hands and feet. this started two years ago, when I was very deficient in vitamin D.
    16, anemia
    17, skin itch.
    18, low fever.
    19, vision change. my eye sight has gotten drastically worse over the last
    year or so. Id say it was age, but for some reason, it is worse when my symptoms are worse. some days I can actually see better, but recently those days are very few.
    20, enlarged liver.
    this is the most recent and hard to explain. an whoosh feeling in the back of my head. like a flush like the shock I get, but not at the same time.
    this is the newest feeling that is becoming a regular part of my day.

    I will say that it takes a lot to bring me to a dead stop. I get by and I get around with what I have until this hit me. this tired is so big that taking a shower and trying to get dressed is about as hard as it could be.

    recently, with the belly pain I have had a lot of kidney pain. I did have a kidney infection a month or so ago, but the kidney pain is still there.

    oh I almost forgot, I have passed out while on the toilet twice recently, and almost fainted a few other times, like trying to take a shower, trying to not throw up. this was from cramping pain which is in addition to the regular pain that never goes away, and is accompanied by profuse sweating, a sort of blindness, crazy heartbeat, hard and slow, then very fast, then black out.


    I had a recent scan that shows my gall bladder is ok.
    though it does show growths of some kind in it.

    this problem has been ongoing but recently, after having a blood clot, over the summer, and a bad uti with kidney pain, the symptoms are extreme enough to cause me not be be able to drive, walk, use my trike, get up or down stairs, .... this feeling feels unrelated to my injuries, but related to the belly pain.
    I have had all the tests for hepatitis, and they are negative.
    Most of these symptoms seem related and have gotten steadily worse over the last five years.


    Im grasping at straws here I guess, but really I can't be the only person to have ever had a problem like this, and I just don't think it is going to go away on it's own though, and I really don't know what else to do.

  10. #10
    Super Moderator Sue Pendleton's Avatar
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    Obviously go with what the doctor suggest (Wise). But if I remember correctly you live/lived in an area that often depends on home wells for water. I'd call your local county health department and ask if there have been any reports of gastro-intestinal illnesses related to wells in your area. Then when you have stool tests done you can let your doc know he should especially test for this, this, and this. Giardia is rare in people in the US but it is not unheard of and it will stick around. If you have moved since the vomiting and diahhrea started call that county's health department too. Hope you start feeling better soon and maybe try a dose of PediaSure daily for your electrolytes until you can see a doctor.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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