Discussions By Condition: I cannot get a diagnosis.

3 years, no answers, too many symptoms-trying not to loose hope

Posted In: I cannot get a diagnosis. 35 Replies
  • Posted By: kman543210
  • June 12, 2007
  • 05:57 AM

I've had so many tests, EMG and barium swallow only thing abnormal besides low potasium and some positive bands on Western Blot (Lyme) test, but still was considered negative. I was bitten by someone about a week before, but no rash and can't be sure if tick or spider or other bug. I'm 6' 7" and only 130 lbs.


July 10, 2004
Driving home from a trip to Montana and Wyoming, within minutes I felt lightheaded/woozy, similar to the feeling if you haven’t eaten all day. Same time, felt a slight tingling in my bladder area and felt as if I was going to pee my pants. Had to pull over to go to the bathroom and have someone else drive. When I went to eat something, for some reason I just didn’t have an appetite to eat. The woozy feeling never went away, and even when I woke up the next morning, I felt the same. For the next few months kept waking up in the middle of the night with the urgent sense to urinate. Also felt chilled like had a fever. It was summer, had to curl up in a blanket to feel warm. When I got a thermometer month later, temperature was actually lower than normal around 97.0

July 2004 through November 2005
Permanent feeling disconnected. Would get more intense at night to the point where I would start to feel really woozy. There were times it was worse, but it never went away and felt like I was taking Benedril all the time (physical feeling, not a mental disconnect).

September 2004
I stopped waking up in the middle of the night and started to get my appetite back. I didn’t seem to be able to eat much, but I gained 5 lbs back of the 10 I lost.

October 2004
Got a stiff neck that lasted for the next 10 months. Also got this twitch in my forehead above my right eye that lasted for an entire week. When I did eat, I always felt like there was a slight pressure in my stomach like I got full really quickly.

March 2005
Twitch in my right eyelid that lasted an entire month

November 23, 2005
I suddenly felt worse this day than I ever had. I felt lightheaded and I lost my appetite again even worse

December 2005
Previously wooziness would get worse at night, but in December, started to wake up in the morning feeling just as bad as when went to bad. Most days driving to work, wasn’t sure that I was going to even make the drive because I felt as if I could pass at times (I never actually passed out). Since started in 2004, felt tired and fatigued most of the time, but in December 2005 is when I started to feel so sleepy in middle of day that I could barely keep my eyes open at times. I would sleep a full 9 hours on the weekends and still feel like I didn’t get any sleep (it felt at times like I was on sleeping pills during the middle of the day). Not only did it seem like my vision was getting blurry, but I also started to notice these dark floaters that covered my field of vision.

January 16, 2006
Driving home at night from work, and within minutes it felt as if my right foot and calf were going numb. When I got home and out of my car, I felt like my right leg couldn’t hold my weight, and I limped a little. For the next 3 weeks, it just seemed to get worse every day. Mornings I would have more strength, but by nighttime, would barely be able to walk. It started to subside after about 3 weeks. Was feeling so woozy that I didn’t feel safe going anywhere by myself out of fear that I was going to pass out at a store.

February 2006
The muscle weakness in my legs came back again after subsiding for a few weeks.

March 2006
I began waking up in the middle of the night really dizzy and feeling like I was going to pass out. I also started to get mucous in my stools at times.

July 2006
Started to lose weight in July because I couldn’t eat much. This is the month also when I started to feel so lightheaded and woozy all the time that I didn’t feel safe to drive anymore. Started staying with my parents, and they drive me to and from work (I have not driven ever since then). Not only was the muscle weakness in my legs worse by now, but started to feel pain in my legs by the end of the day (this was still tolerable at this point). I also started to feel similar feelings in my arms that happened in my legs.

September 2006
I had an attack on my legs one Sunday where within minutes I felt as if my legs were going paralyzed. Ever since that day, I’ve had to walk with a cane. This was also the month where I started to have difficulties swallowing. By the end of September I had dropped weight from 150 lbs at the beginning of July to only 135 lbs by the end of September.

October 2006
The pressure in my head worsened by this time, and I had to take ibuprofen daily. The pain in my legs would also last from 2 to 3 hours almost nightly. My temperature really started to fluctuate a lot by this time. It was still below normal for most of the day, between 97.0 and 97.7, but it would shoot up within 30 minutes at times as high as 99.2, and I would feel like I was radiation heat, especially my head. Swallowing difficulties still worsened and had difficulties burping.

November 2006
Started to feel burning in my chest, developed acid reflux (famotidine that I started taking in December alleviated this). I also started to feel burning sensation in the back of my head, and it went down my spine; this happened several times after my head pressure would get back and lasted into December.

December 2006
Started Ceftriaxone antibiotic treatments for Lyme Disease.

January 2007
Legs started to improve and felt stronger at times. The pain that came on in my legs previous year didn’t happen anymore. I also stopped waking up in the middle of the night feeling dizzy. Head pressure also seemed to subside. End of January, my swallowing seemed to worsen even more.

February 2007
Had to stop antibiotic treatments due to developed an allergic reaction. Middle of month, my arms started to get weaker and arms started to feel at times that they were going paralyzed. By the end of one of the weeks, my arms were so weak that it was very difficult to write and by the end of that Friday I could barely hold up my arms. Near end of month, I was in the car going home, and there was a warm tingling sensation that came over my chest. Within minutes, I started to have difficulties breathing (it felt like I was struggling to breath in as if something was happening to my diaphragm). Muscle twitching throughout my body started this month too.

March 2007
Swallowing difficulties still worsened. By the end of some days, it felt as if my mouth, tongue, and throat were so weak that I could barely get noodles down. At times my tongue would feel a similar sensation that my legs and arms did.

April 2007
Head pressure and lightheadedness started to come back to the levels where it was at the end of 2006. Still some difficulties breathing.

May 2007
Tuesday, May 1, 2007, I was sitting watching TV when I felt warm tingling sensation in my chest (similar to what happened previously). It also went as low as my abdomen, and this is when I started to experience a worsening in my breathing. This started to happen daily after this, and during many of these “attacks” my body would start to shake really bad. Sometimes I start shaking, then break out into a sweat, then when it feels like it’s subsiding a little bit, I start to feel warm, and my temperature goes up 99.1.
Saturday, May 19, 2007, mom was driving me to work when felt like I could barely get a full breath in and felt really lightheaded, so she took me to the emergency room. I’ve avoided going to the emergency room no matter how bad I’ve felt, but with my breathing and chest pressure, I wasn’t sure if this was something that could wait.
I'm having a lot of difficulties breathing, swallowing, eating.

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35 Replies:

  • Sorry that was so long, but this has been going on so long. I should probably mention all the tests that I've had over the last 3 years: CTs (head, pelvic, abdomen), chest x-rays (3 times), MRIs (3 brain, neck, spine, lower spine), barium enema, EMGs (5 different times), muscle biopsy on leg, ultra sound of heart (ECG, twice), EKGs (three times), spinal tap, tons of blood and urine tests, ELISA test (3 times), Western Blot, barium swallow, modified barium swallow. The EMG in February 2006 showed something, so was done again by neurologist but didn't show anything. November 2006, neurologist did again and showed abnormalities. I've seen the following specialist: Internist (countless), neurologist (on my 3rd), rheumatologist, oncologist (I have a history of cancer from 16 years ago), TMJ doctor, optometrist, infectious disease specialist (2 different ones), speech therapist, naturopathic doctor, nutrionist. Problem was that when I was with the HMO until this year, most of the doctors would try to refer me to mental health. It wasn't until the abnormalities in November 2006 that they finally believed that it wasn't mental. I had a PICC line put in and did Ceftriaxone for a while but developed an allergic reaction to it after I got a viral infection.
    kman543210 27 Replies Flag this Response
  • Please read threads containing information on Chronic Fatigue Syndrome in this forum. Many people are having symptoms similar to yourselfTraditional medicine will treat symptoms of Chronic Fatigue syndrome, but at a high cost of vital body organs(liver, kidneys, ect...) and the wallet$$$$Non-traditional treatment is what many are doing. NAET therapy, reiki, herbs, vitamins, minerals ect...I would look into these things. The internet is full of information. Just click and go.
    Anonymous 42789 Replies Flag this Response
  • kman, many people with your symptoms have been referred to Psychiatrists.It is obvious that the problems are psysiological and not psychologicalPlease google "Symptom Checkers"enter as many symptoms as you are ablestart with the worse ones firstit will narrow down the field if not give you your answer
    Anonymous 42789 Replies Flag this Response
  • Thanks for the suggestions. I promise that this isn't Chronic Fatigue Syndrome. There is definite damage to my motor neurons on my legs, confirmed by 3 different EMG tests. My swallowing muscles have also been affected, confirmed by a speech pathology and barium swallow. The breathing problem is connected as well and most likely has to do with my diaphragm and muscles rather than lungs. Even though the neurologist that I'm seeing is an ALS specialist and doesn't think it is ALS based on my leg readings, it still is involving my motor neurons. Can you imagine a 6' 7" 30 y/o who only weighs 130 lbs. You'd think that would have set off alarms a lot sooner for the doctors. Lyme disease is the one thing that always comes up when I type in most of my symptoms, but no one in Oregon really believes in it. Thanks again.
    kman543210 27 Replies Flag this Response
  • you and i have a lot in common. all of my stuff started after foot surgery in Nov05. your condition sounds much worse than mine but we share MANY of the same symptoms, however, yours are more severe.i've had 4 surgeries since Nov05 and i relapsed each time (flu-like symptoms, feel like i'm wearing a lead suit, can't keep my eyes open - sleep around the clock, etc). i see Drs everyday, sometimes 2-3.. i won't stop until i get answers. all of my Drs seem skeptical and i often wonder if insur is holding them/me back. i'm insured but they have NO concrete evidence to dive deeper.. blood tests are always normal.you've done a great job with keeping a journal. mine is in the form of training and how well it went.. before i realized i was actually sick. the muscle twiching/spasms and creepy crawlers under my skin/muscles really concern me. hang in there.. don't give up. feel better and keep in touch.
    sonicbmx 44 Replies Flag this Response
  • Your docs are ignoring your lymes results and symptoms - shame on them, in my opinion! You need to find a qualified lyme literate doc, or better yet, an alternative doc who specializes in treating lymes disease. Get another test done by IgeneX or Bowen labs. Lymes disease can cause all of your symptoms and is very very debilitating. Look up Ralph's posts on this. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • I had a lot of tests on me too and yeah (my neurologist was an idiot also along with most of my doctors that I have been seeing since 2002). I got the same run around (stress....it is stress...it is in your head......blah.....blah...blah) I had a sudden onset of symptoms also in 2002 and when I say sudden....I mean sudden. Numerous symptoms then and numerous symptoms now. Some improvements along the way.....different symptoms along the way. I figured out last summer that I was gluten Intolerant (it's an autoimmune disease). I am likely sub-clinical gluten Intolerant and not celiac. There are 2 versions (Celiac and Sub-clinical gluten Intolerant). But the gluten diet didn't work on all my symptoms. Some perhaps but certainly not the majority and I kept having symptoms. Finally figured out a few months ago that I have heavy metal toxicity. Went to a functional clinic. Have you tried a functional clinic. They are suppossed to use both homeopthic type stuff and medical stuff and usually specialize on hleping people the (regualr bad doctors can't seem to help). Anyway, I got heavy metal posioning in 2002...(no diagnosis until 3 months ago)..and got real sick......real sick....as in everything felt swelled up (heart/liver/everything)......though liver was the only thing they would confirm as swelled. They told me I didn't have an autoimmune disease and that blood work was fine and that I was just stressed/depressed even though I was at the point that I felt I was actually dieing. I was so pale and so sick.....and in so much pain....that i know what dieing must feel like becasue I was that close......(and the liver doesn't just swell for nothing)....they even tried to say I was eating bad......of all the nerve:mad: Figured out around that time I had a sulfur allergy and since my family's well water kind of smelled funny.....I figured it probably had sulfur and probably had been making me feel bad. After 3 months off (symnptoms finally started to fade.....but not all....chronic fatigue and joint pain and occasional liver/heart pain still not gone..) About a year ago and a half ago ...I started going numb....(first tongue and left hand/left foot...then hit right foot/right hand.....then partial numbness all over with extrmeties more numb.) Neurologist did MRI of spine....MRI of brain and the test with the needle where they shock you a bit? Said I was perfectly fine.....just stressed and depressed.....bah.....had to add him to my stupid doctor list. That's when I got mad and decided I would figure it out myself. Seems you are at that point now. You can order lab tests online without doctor approval. There are probably several companies? directlabs.com and medlabs I think are a few. They send you paperwork....you take it in with you and then you get results in an email. The problem is figuring out what to test for....and that you have to do by crossing off things potentially wrong. You can do the basic type of tests to see if the general stuff looks healthy. In my case most of it was.....that is why I've been written off by many doctors because the autoimmune thing never flagged and the rest looked A-okay. Had to make a list of everything that it could be so I could do more specialized tests. Gluten Intolerance was not first on my list....had it down the list quite a bit but loh and behold....I am gluten intolerant. I did not do the blood test though since I read that the blood test was ineffective and that by the time the blood test is positve ...you are very severly damaged. (most oif immune system 70% is in intestines anyway)....not the blood. I went through enterolab in Dallas to get it checked. There are other labs (2 others that check the stool in the new way that most doctors don't know about). Most docs don't know much at all about gluten intolerance and what they know is generally outdated info and completely wrong....as in completely wrong......as in I haven't found 1 doc that knows as much as me about it (and I'm sure what I know isn't even 10% of it). I found all the correct info in the gluten forums on the Internet (by people that also suffered from it and also bad docs). 1 out of 100 people have it. Most aren't diagnosed. Until a few years ago...American docs thoght it was rare and a European thing. It's not. It's an autoimmunce disease that makes you bleed on the inside. I eat gluten and there is blood in my stool. blood.....as in blood....as in bleeding internally. It's not just a digestive thing either.....that is why I scoffed at it initially and was focusing on other possibilities. Sub-clinical gluten Intolerance is real bad stuff and can affect you completely....nerves, heart, liver, spleen, bones, and lots of other stuff. Can cause other autoimmune diseases also.....like Diabetes, myasthenia gravis (weakness of muscles), and all the other countless autoimmune diseases..(think there is around 80 autoimmune diseases and apparently docs don't understand them enough because if they had I would have been diagnosed gluten intolerant in 2002 not 2006 and better yet....I would have been diagnosed it when I was a kid ...a very sick kid......it comes out when you are a kid.....goes dormant...and triggers later in life again abd hits you 10 times harder when you are an adult). But the gluten intolerance was actually just another symptom since I wasn't improving on the diet. Heavy metal toxicity was the culprit (maybe not the only one).....which caused the gluten intolerance to activate. I think I got posioned by my dad's well water out in the country. Pretty for sure I got it there. Thought country water was safe but I was told that lots of it is contaminated....especially near places that are good spots to find oil or natural gas.....and filters don't apparently work cause we had a good expensive well filter.... Thought at the time that it was the sulfur in the water......so every now an then on the weekends for the last few years(I would drink the other properties well water).....different water table source.....but heck likely.....it was likely contaminated too........just started doing it because I thought I was just too paranoid (OCD)....but being paranoid can end up saving your life. Anyway, functional clinics may can help you on a few things like figuring out if you have heavy metal toxicity or homone problems or thyroid problems....and food allergies ...and even lyme.....(got some little device that they use.....something about frequencies of food and how your body reacts to it......and heck gluten was at the top so I know it must half way work since I already knew I was gluten intoleranct and they definitley told me I didn't have lyme.....figured from a lot of my symptoms that I had it but they checked with the metal thingie again......and my body didn't react to that frequency.....anyway seems like Star Trek kind of stuff....like thermal imaging and stuff.....but hey if it works....it works.....and they showed me an inflamed thyroid......and poor circulation in my hands......not showing in blood work yet though.......except my total neutrophils being high (80%)....but thyroid nodules /problems run in my family...I learned later. As for the heavy metal.......don' think blood tests are effective there either cause it likely is in your tissues unless you just recently got poisoned....then likely it is in your blood at high levels.....they have to chelate (to get out of tissues/organs)...and check the heavy metal in your urine and stool after they chelate to see how heavy metal toxic you are..... so keep an open mind.....it may not actually be lyme.....there's a lot of people that told me it probably was and come to find out...ot wasn't. It may not even by heavy metal toxicity......but you might want to add it to your list to check......and think about those functional clinics...... I'm still checking for other stuff too.....been chelating the metals out but no major improvements yet.....still think I have something else also (likely other autoimmune disease). Usually people that deon't respond on gluten diet have several things wrong since their bodies are majorly messed up by the time they are diagnosed........ Wish you good luck on your journey to better health though......and don't give up. There are far too many bad docs running around to let them get you down.......just add them to your stupid doctor list and keep going:rolleyes:
    hawksley 3 Replies Flag this Response
  • I'm definitely going to continue to persue Lyme Disease. The problem is that there aren't really any Lyme literate doctors around here. The naturopathic doctor that I saw was literate, and that's how I got the Ceftriaxone treatments. I didn't have a major noticeable Herxheimer reaction that I was hoping for, but it would have been difficult to tell since I was and am so sick. Unfortunately, I developed an allergic reaction to it before I could finish the treatment. She was going to refer me to a LLD down in Colorado, but he is retiring, and I'm not in the position to travel. Does anyone know the Mayo Clinic's view on Lyme Disease? I know some doctors discount it completely, whereas others may say everyone has it. I am also going to go back to the naturopathic doctor to get retested by Igenex (that's where I was tested previously) and also maybe get tested for the co-infections. I started to get nail splinters last year, and the only reason for these is either trauma or an infection. I had a blood culture done last year with nothing coming from that.
    kman543210 27 Replies Flag this Response
  • Maybe another tick-transmitted disease? Rocky Mountain? have you seen an epidemiologist?
    rad-skw 1605 Replies Flag this Response
  • I've had so many tests, EMG and barium swallow only thing abnormal besides low potasium and some positive bands on Western Blot (Lyme) test, but still was considered negative. I was bitten by someone about a week before, but no rash and can't be sure if tick or spider or other bug. I'm 6' 7" and only 130 lbs. July 10, 2004Driving home from a trip to Montana and Wyoming, within minutes I felt lightheaded/woozy, similar to the feeling if you haven’t eaten all day. Same time, felt a slight tingling in my bladder area and felt as if I was going to pee my pants. Had to pull over to go to the bathroom and have someone else drive. When I went to eat something, for some reason I just didn’t have an appetite to eat. The woozy feeling never went away, and even when I woke up the next morning, I felt the same. For the next few months kept waking up in the middle of the night with the urgent sense to urinate. Also felt chilled like had a fever. It was summer, had to curl up in a blanket to feel warm. When I got a thermometer month later, temperature was actually lower than normal around 97.0 July 2004 through November 2005Permanent feeling disconnected. Would get more intense at night to the point where I would start to feel really woozy. There were times it was worse, but it never went away and felt like I was taking Benedril all the time (physical feeling, not a mental disconnect). September 2004I stopped waking up in the middle of the night and started to get my appetite back. I didn’t seem to be able to eat much, but I gained 5 lbs back of the 10 I lost. October 2004Got a stiff neck that lasted for the next 10 months. Also got this twitch in my forehead above my right eye that lasted for an entire week. When I did eat, I always felt like there was a slight pressure in my stomach like I got full really quickly. March 2005Twitch in my right eyelid that lasted an entire month November 23, 2005I suddenly felt worse this day than I ever had. I felt lightheaded and I lost my appetite again even worse December 2005Previously wooziness would get worse at night, but in December, started to wake up in the morning feeling just as bad as when went to bad. Most days driving to work, wasn’t sure that I was going to even make the drive because I felt as if I could pass at times (I never actually passed out). Since started in 2004, felt tired and fatigued most of the time, but in December 2005 is when I started to feel so sleepy in middle of day that I could barely keep my eyes open at times. I would sleep a full 9 hours on the weekends and still feel like I didn’t get any sleep (it felt at times like I was on sleeping pills during the middle of the day). Not only did it seem like my vision was getting blurry, but I also started to notice these dark floaters that covered my field of vision. January 16, 2006Driving home at night from work, and within minutes it felt as if my right foot and calf were going numb. When I got home and out of my car, I felt like my right leg couldn’t hold my weight, and I limped a little. For the next 3 weeks, it just seemed to get worse every day. Mornings I would have more strength, but by nighttime, would barely be able to walk. It started to subside after about 3 weeks. Was feeling so woozy that I didn’t feel safe going anywhere by myself out of fear that I was going to pass out at a store. February 2006The muscle weakness in my legs came back again after subsiding for a few weeks. March 2006I began waking up in the middle of the night really dizzy and feeling like I was going to pass out. I also started to get mucous in my stools at times. July 2006Started to lose weight in July because I couldn’t eat much. This is the month also when I started to feel so lightheaded and woozy all the time that I didn’t feel safe to drive anymore. Started staying with my parents, and they drive me to and from work (I have not driven ever since then). Not only was the muscle weakness in my legs worse by now, but started to feel pain in my legs by the end of the day (this was still tolerable at this point). I also started to feel similar feelings in my arms that happened in my legs. September 2006I had an attack on my legs one Sunday where within minutes I felt as if my legs were going paralyzed. Ever since that day, I’ve had to walk with a cane. This was also the month where I started to have difficulties swallowing. By the end of September I had dropped weight from 150 lbs at the beginning of July to only 135 lbs by the end of September. October 2006The pressure in my head worsened by this time, and I had to take ibuprofen daily. The pain in my legs would also last from 2 to 3 hours almost nightly. My temperature really started to fluctuate a lot by this time. It was still below normal for most of the day, between 97.0 and 97.7, but it would shoot up within 30 minutes at times as high as 99.2, and I would feel like I was radiation heat, especially my head. Swallowing difficulties still worsened and had difficulties burping. November 2006Started to feel burning in my chest, developed acid reflux (famotidine that I started taking in December alleviated this). I also started to feel burning sensation in the back of my head, and it went down my spine; this happened several times after my head pressure would get back and lasted into December. December 2006Started Ceftriaxone antibiotic treatments for Lyme Disease. January 2007Legs started to improve and felt stronger at times. The pain that came on in my legs previous year didn’t happen anymore. I also stopped waking up in the middle of the night feeling dizzy. Head pressure also seemed to subside. End of January, my swallowing seemed to worsen even more. February 2007Had to stop antibiotic treatments due to developed an allergic reaction. Middle of month, my arms started to get weaker and arms started to feel at times that they were going paralyzed. By the end of one of the weeks, my arms were so weak that it was very difficult to write and by the end of that Friday I could barely hold up my arms. Near end of month, I was in the car going home, and there was a warm tingling sensation that came over my chest. Within minutes, I started to have difficulties breathing (it felt like I was struggling to breath in as if something was happening to my diaphragm). Muscle twitching throughout my body started this month too. March 2007Swallowing difficulties still worsened. By the end of some days, it felt as if my mouth, tongue, and throat were so weak that I could barely get noodles down. At times my tongue would feel a similar sensation that my legs and arms did. April 2007Head pressure and lightheadedness started to come back to the levels where it was at the end of 2006. Still some difficulties breathing. May 2007Tuesday, May 1, 2007, I was sitting watching TV when I felt warm tingling sensation in my chest (similar to what happened previously). It also went as low as my abdomen, and this is when I started to experience a worsening in my breathing. This started to happen daily after this, and during many of these “attacks” my body would start to shake really bad. Sometimes I start shaking, then break out into a sweat, then when it feels like it’s subsiding a little bit, I start to feel warm, and my temperature goes up 99.1.Saturday, May 19, 2007, mom was driving me to work when felt like I could barely get a full breath in and felt really lightheaded, so she took me to the emergency room. I’ve avoided going to the emergency room no matter how bad I’ve felt, but with my breathing and chest pressure, I wasn’t sure if this was something that could wait.I'm having a lot of difficulties breathing, swallowing, eating.Hi this sure sounds like celiac disease. Look up the symptoms for that and see what you think.
    Anonymous 42789 Replies Flag this Response
  • I don't wanna blow off your Lyme disease theory, but I think your problem is related to your potassium.When you have low potassium it will affect your muscles, and should not be messed around with. Our arms and legs, for example, need potassium for the muscles to move. Keep in mind that your heart is also a muscle. Our hearts can't beat without potassium, which is also necessary to regulate blood pressure. It most likely means you will have low blood pressure too. The kidney is the main organ that controls the balance of potassium. It removes excess potassium into the urine. When potassium levels are low, you can become weak because cellular processes are impaired. Some symptoms are;Weakness, tiredness, or cramping in arm or leg muscles, sometimes severe enough to cause inability to move arms or legs due to weakness (much like a paralysis) Tingling or numbness Nausea or vomiting Abdominal cramping, bloating Constipation Palpitations (feeling your heart beat irregularly) Passing large amounts of urine or feeling very thirsty most of the time Fainting due to low blood pressure Abnormal psychological behavior (depression, psychosis, delirium), confusion, or seeing or hearing things (hallucinations) If you have your blood checked then these are the normal levels you can use to compare to: 3.5-5.0 mEq/L Anything under 3.5 mEq/L is to low!Ok.. so some of the caused for low potassium are loss through the kidneys, Magnesium deficiency, intestinal or stomach problems, medications such as diuretics, any medication with cortison, some metobolic states, malnutriton and leukimia.Hope this helps you a bit...
    Anonymous 42789 Replies Flag this Response
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  • Low Potassium is a symptom of Chronic Fatigue Syndrome as well as all of your other symptoms. It is a real disease. It has neurological symptoms as well as endocrine, cardiac, respiratory, musculo-skeletel, immune and others.CFS is the broad term. All of the other "diagnoses" are just the symptoms of CFS. Some people have been looking for 20 years for their diagnosis. Many are beginning to be diagnosed with CFS. Not because it's the only diagnosis left, but because it is real. There are ways to be tested. Immune bloodwork, neurological resting, cardiac tilt table testing to determine orthostatic hypotension. Doctors are now beginning to take CFS seriously. So sad for the sufferers who have endured 20-30 years of illness with being accused of being hypochondriacs or docs telling them that it is all in their head.MC
    Anonymous 42789 Replies Flag this Response
  • go to www.wacma.com or www.asap.org I think you may find your answer there..... Hang in there.....
    Anonymous 42789 Replies Flag this Response
  • Thanks again for all your suggestions. I do have low potassium and take K-tab pills for that (it does not change how I feel, so this would be a symptom before it would be the cause). I know that CFS is real, but it is a very broad diagnosis and does not cause damage to your nerves like ALS or MS does. I'm glad that a doctor hasn't tried to "diagnose" me with that because that would be a cop-out in my situation. All my symptoms came on suddenly, and I don't really have good days either. The good news is that I'm going to try the antibiotic treatments again, different protocol, and my neurologist is going to refer me to the Mayo Clinic in 2 months if she can't find any answers or the treatment doesn't help. I've heard "celiac disease" before but I'll have to look that up to see if it matches anything.
    kman543210 27 Replies Flag this Response
  • kman...CFS is not a cop out. Some of us here have already been diagnosed. What we are finding is this.CFS is the broad diagnosis. Every other diagnoses is a symptom of CFS.MS,ALS, Alzheimers, Parkinson's, Epilepsy are all being connected to CFS.Find a doctor who treats CFS patients. He will be the one to give you the answers and put the pieces together for you.If you keep messing around with docs who don't believe CFS is real, you will be like many in this forum....looking for a diagnosis for the next 20 years.We are trying to help many in this forum with these symptoms.We are learninfgmore than the docs know, who treat us.there is a ton of information on CFS/viruses/vaccines and all kinds of things.Read around this forum....CFS is the hot topic...because it is affecting so many people, on so many levels.The doctors will tell you...yes, you have MS...or ALS...or Diabetes...or Celiac....or Anxiety...or Lymphadenopathy...or whatever....but they do not look for the "underlying cause" of why you have MS,ALS,diabetes, ect...Just trying to help. I know how frustrating it is to want to know why...and have noone know the answer. Many of us are finding the answers...even though they are not the answers we wanted to find.Best of wishes to you...mommy cat
    mommy cat 1654 Replies Flag this Response
  • How's the exhaust system on your vehicle and also, do you have a carbon monoxide detector in your house? Might want to check that out. Think there's a leak of something somewhere...might not be carbon monoxide, but something else that needs to be fixed. Keep me posted. :confused:
    Monsterlove 2921 Replies Flag this Response
  • Dear Original Poster-It is all the same thing- Auto-immune symptoms mean that if you are sick in one organ, you are sick all over.All CFS, ID, M.E., Multiple Chemical Sensitivity, Chronic Inflammation, etc- it is all the same thing. The clue lies in the Cytokine levels. It is not vague- it is just affecting every system- sad but true.So Celiac, IBS, Gerd, Dysautonomia, it is all the same thing.Even the Celiac people admits to having more than one intolerance.You are having allergies that you have not even figured out on your own.Journal what you eat- and detox.Detoxing is key- You need Omega 3, Primrose Oil, Turmeric.Visit a Naturopath.I am not going to even try to argue it- I am overwhelmed reading every single article available on the Cytokyne Network and its dynamics.Don't hold your breath for American Doctors, they are like bank clerks- filling paperwork and taking your money.Netherlands, Denmark- those are the countries that are putting funding towards getting to the bottom of this "unrelated" "incurable" conditions.All the research is out- it is just a matter of reading it. Or ask your doctor if Zoloft is right for you.
    Eatafruit78 960 Replies Flag this Response
  • mommy cat: I hope you didn't think by my saying CFS is a cop out that I was saying that it doesn't exsist. What meant was that I was always afraid a doctor would say you have CFS, you have to live with it. The problem with that is that no matter what you label my illness, what's causing it? Strange thing about my symptoms is that they have all been sudden since first onset. When I say sudden, I mean within minutes I feel them coming on, then they never really go away. Monsterlove: It's funny you ask that because the car that I used to drive did have exhaust smells come into the car when someone opened the window, so my friend and I both thought, hmmm... But, when this happened, I was not driving my car. Since last July I haven't driven my car either and after this first happened, I didn't go anywhere in a car. Not sure if it's anything in my apartment because I wasn't there when it first happened. I've been living in my parents' house since last July, and I've only gotten worse (I grew up here in this house). These are good thoughts, and I was also tested for heavy metals recently. I even stopped using antipersperant thinking, is it the aluminum oxide poisoning me? No improvements after that either. Eatafruit78: I will have to admit that my diet has not been very good especially since I haven't been able to eat. I try to eat when and what I can, so sometimes that was a corn dog, sometime Ramen noodles, sometimes bacon. I was eating a lot better when this first happened, but due to my swallowing problems and loss of appetite, it's made things worse (I'm 6' 7" and only weigh 135 lbs). When this first happened, I thought, is it something I'm eating? Am I getting too much caffeine from the mocha frapuccinos I drink? I completely stopped eating the things that I normally did, no caffeine, just water, and didn't see any changes at all. When I went to my PC a few weeks back, I inquired about allergy testing, but he didn't do any. I have no known allergies my entire life. The other thing is that even though I've lost my appetite, I'm not actually sick to my stomach ever and don't have diarrhea or constipation. I am lactose intolerant since chemo and radiation when I was 14. The doctor that clinically diagnosed me w/ Lyme Disease is a naturopathic doctor, so I've already been down that road too. I have been thinking about the detox thing lately, what is the best way to do this? Even if it isn't the cause of my symptoms, it couldn't hurt. Thanks again to everyone for your suggestions...interesting how many differnt takes there are to this.
    kman543210 27 Replies Flag this Response
  • I have not written my whole story here on WD- because I am really overwhelmed with research- and my story is too darn long.I spent weeks like you trying to figure out what was hurting me so bad.To make the story short- allergies or intolerances can cause constipation and other problems w/o causing rashes.*** Please- read "Never Be Sick Again" - this is not a gimmicky book- this is MIT Caliber research. This book took me out of bed and into my computer- by the time I visited my NAET doctor I was on the right track to get treated.It sounds crazy- but it was almost like I had a virus or a bacteria and it never resolved. Instead I could not swallow and I thought I was going to die in my sleep. Eating protein was impossible! I was "allergic" to all protein. My body will fight it in very creative ways- sooner or later my meal would have a sad ending, and I would be suffering pain, low grade fiber, and severe weakness.We are so dead serious- you should read as much as you can. Keep your options open- too many people are sick like I was- you are not alone.Best,Fruity.ps: I beg you to stay away from processed food. My research is pointing at MSG as a huge link on this mystery condition.
    Eatafruit78 960 Replies Flag this Response
  • Thanks again Fruity. It's funny that you warn against processed food because my diet has been weighing heavily on my mind lately about how bad I eat. It's hard living w/ my parents because my mom doesn't really cook, never any good foods around, and sometimes I can't stand long enough to cook for myself. I can't be certain, but I don't think my diet caused this illness, but I definitely think that it isn't helping anything. I know how to eat well, and I've done it before, it's just a lot more difficult here. I haven't been to a grocery store in almost a year. You're right about how overwhelming things can be, so much information and misinformation out there. I appreciate everyone's insights, but to be honest, it always seems like whatever someone else has, they insist that I have the same thing:-sister is depressed, so my symptoms caused by depression-friend of family has MS, of course I have MS-coworker's husband died of ALS, I have ALS-everyone who has Lyme thinks I have Lyme-Celiac disease, of course that must be it-CFS, that's the answer to what's wrong with me The above statements aren't sarcasm, just an example of what I get from other people. The worst part was the doctors thinking I was anerexic, IBS, depressed,...I'm definitely keeping my options open, and I'm not dismissing anything even though the doctors used to dismiss me at first. I will tell you though that even though I haven't had an appetite, I haven't been sick to my stomach, I haven't been constipated, and I haven't had diarrhea. I really wish my doctor would've refered me for allergy tests, just in case. I haven't noticed an intolerance to any kind of food. Nothing goes down any better or worse. I'll definitely have to take a look at the book you're recommended.
    kman543210 27 Replies Flag this Response
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