Discussions By Condition: I cannot get a diagnosis.

Lots of symptoms... what's wrong?

Posted In: I cannot get a diagnosis. 30 Replies
  • Posted By: Spitfire
  • July 13, 2007
  • 05:18 AM

I have dealt with lots of odd symptoms the past few months and I don't even know where to start assigning them to a problem. So I came here.

As for background... I have had Crohn's Disease for years but I've been pretty much in remission on the same meds for years. My Dad passed away with melanoma this past December (we found out last March). He had no other medical problems. My Mom has an underactive thyroid and also deals with panic attacks. I've never had any problems other than the gastrointestinal problems and I just had a colonoscopy/upper GI done last December (no problems).

Just this past March is when my wierd symptoms started. It started with flu-like symproms and I assume it was the flu since my friends had it and it had the same symptoms (fever, headache, stuffy nose, sore throat). It went away but morphed into a bronchitis (hacking cough, hurt when I breathe hard). I treated this with anti-biotics but it was stubborn to go away. I had a slight lack of breath, like I couldn't breathe in as hard as usual. I used a nebulizer and anti-biotics and it gradually got better. Oddly during this time (April) I had a couple odd episodes at night where I woke up with chills... now these weren't everyday chills, they were chilled to the bone radiating from my center out to my extremities. Yet I was still warm to the touch. I was afraid so I went to the hospital and they did the usual vital tests and they said it was anxiety. I tend to hold things in so I accepted it.

Now, here's the problem that's been nagging me for like 2 months. The biggest thing is sometimes I am aware of my heartbeat (palpitations). I've never had heart problems but my heart will RANDOMLY start palpitating. It's usually slightly faster than usual (like 80-120bpm) but it's nerve-wracking because I can feel the heartbeats and it's not normal. Other times it is back to normal but there is no correlation between a certain activity and the palpitations. I can be watching a movie or driving or sleeping and it comes. Every once in a while, when I take a nap mostly, I will wake up to very fast heartbeat that makes it feel like my bed is shaking! The beat is much faster than a normal palpitation. It goes away in at most a minute but it really worries me and makes me not enjoy going to sleep anymore!
In addition to the heartbeat, a feeling of anxiety and really feels like a slight bit of andrenaline in my system is common. This is associated with the palpitations. I feel on edge and not in a good mood. It's hard to explain the feeling because sometimes it feels like lightheadedness or an "on edge" feeling.
Third, I have burping associated with these other symptoms. Although I will burp more after eating, I also can burp on an empty stomach. They are more like hiccup-burps and I can make myself do them whenever (I just try and burp and it comes up) This can cause acid-reflux symptoms so I take Tums. I've seen GERD as a possibility.
The last, most recent thing is a slight tingling in my hands. It's not numbness or extreme tingling, just a slight tingling (enough for me to notice when I'm laying there). It is not located in one spot, it changes location from my hands, sometimes my feet, sometimes other places. This is all random and it goes away often just to come back later. I also have slightly numb spots on my scalp sometimes and also my face but this comes and goes. I have NO CLUE what this is all about... I've never had problems with circulation or neurological.

Sorry for the essay, but as you imagine all of these things are causing me anxiety and I see alot of these things under panic attacks/anxiety. I know that Googling symptoms is the worst thing I can do but I need to figure this out. I am a graduate student with no money and adequate insurance. I can't be going in (like alot of people on the forums) and doing all of these tests only to find nothing. Can anyone give me ideas on what could be wrong with me. I am thinking anxiety/panic attacks since the symptoms all fit this. But all at once? Could Crohn's be causing any of this? Is this all linked to my holding things in and my Dad passing? Do you recommend any test I should do? Could it be a mix of anxiety/GERD/ and some nutrient deficiency? I am taking b-12 now to see if the tingling goes away... please, someone ease my mind!



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30 Replies:

  • Please read "hot flash. anxiety attack, or the flu" and "want answers, read here".that's a start.Frui.
    Eatafruit78 960 Replies Flag this Response
  • B-12 is only effective when injected it is not effective in a pill form. It sounds as though your problem is anxiety. You can try buying some B complex vitamins - as those are supposed to help with stress(anxiety) There are better treatments out there for the GERD (prilosec otc,etc) which your insurance will cover with a script - eliminating your symptoms from even happening. I do know that anxiety/panic attacks always seem to occur "out of the blue" I believe its your subconcience sending wrong signals - hence the whole flight/fright response. Most sufferers of Post Traumatic Stress Syndrome repress their traumas only for the body to try then to deal with it the best way it knows how. My advice seek a therapist for not only your symptoms but the loss of your father - you simply may not be dealing with this and now your body is going haywire. It couldnt hurt.
    Anonymous 42,789 Replies Flag this Response
  • I wanted to add that I'm a 26 year old male... if that matters. I read over that post but it doesn't fit my situation. I don't have the flu-like symptoms anymore, just the four things in the last paragraph of my first post.
    Spitfire 6 Replies Flag this Response
  • spitfire, it does fit...look again...mycoplasma is responsible for many diseases.So many people are complaining of the flu like symptoms. Problem is they come and go.Eatafruit78 is telling you this for a reason. We have been here a while and are helping a lot of people. Please look again. You are not alone. This forum is full of people with your symptoms. I am just one of those people.Hope you are well....mommy cat
    mommy cat 1,654 Replies Flag this Response
  • spitfire, it does fit...look again...mycoplasma is responsible for many diseases.So many people are complaining of the flu like symptoms. Problem is they come and go.Eatafruit78 is telling you this for a reason. We have been here a while and are helping a lot of people. Please look again. You are not alone. This forum is full of people with your symptoms. I am just one of those people.Hope you are well....mommy catMC is right. Forget everything you think you know about 'diagnosis' - the body is a dynamic network- of course the flu symptoms come and go...you have clues- B12? your body is probably allergic to B vitamin, this happens to many of us after an infection.Best.
    Eatafruit78 960 Replies Flag this Response
  • spitfire - if you read enough posts you will see mc and fruity have diagnosed everyone. The newest diagnosis is mycoplasmas. I hope you find your answers but I think your intuition is best - probably anxiety.
    Anonymous 42,789 Replies Flag this Response
  • ok, I'm open to any suggestions at this point. Is there anything in particular that I can do for myself. It seems like everyone in that post is doing something different. These symptoms are so varied I don't know where to begin. I also do not have any known mold in my apartment but who knows what's up inside the walls... but how does one ever know when moving in?
    Spitfire 6 Replies Flag this Response
  • ok, I'm open to any suggestions at this point. Is there anything in particular that I can do for myself. It seems like everyone in that post is doing something different. These symptoms are so varied I don't know where to begin. I also do not have any known mold in my apartment but who knows what's up inside the walls... but how does one ever know when moving in?There are links on that thread I asked to read- the ones about cave man diet- and some supplement recommendations.I always ask people to start with vitamins, oil of oregano capsules, cut all soda, aspartame, wheat, processed food, petrochemicals, you need to go green- and you need herbs for your liver, lungs, etc. etc.That thread "hot flashes, anxiety attacks, or the flu " has a lot of it. Start a food journal- try to find a NAET doctor who is not into any kind of spiritual healing treatment- just NAET, plain. naet.com.I used to have palpitations, anxiety, and cold sweats 2 hours after eating beef- joint pain for days after eating turkey- black outs due to polyester.It was not the mold that caused all of it- it was multiple factors: toxins, mycoplasma infections, prescription drugs, processed food, toxic ingredients in household products.Sorry I can't give you a treatment, I can only give you info- health is a delicate matter- you have to make informed decisions.Best,Frui.
    Eatafruit78 960 Replies Flag this Response
  • It sounds like your symptoms started after you were sick and took the courses of antibiotics - which ones were you prescribed? Antibiotics have lots of side effects, and leave you with a compromised immune system...I have had that feeling of chilled to the bone after taking clindamyacin - it is a terrible feeling. Antibiotic use can have side effects that linger for many, many months. Plus they just put your whole body out of balance. Your immune system is wrecked and it is affecting your heart, Lungs, Spleen and Liver. Please get yourself the best probiotic you can find and begin taking this daily. This will help rebuild your intestinal flora, which will help boost your immune system. Look into NAET, and also look into finding an Oriental Medical practitioner who is a certified Chinese herbalist - I think this would really help you. These modalities look at the whole body, not just a list of symptoms like GERD,anxiety, and others. In Traditional Chinese Medicine antibiotics can easily harm the Spleen, and when the Spleen is not functioning well, it is easy for the Heart and Lungs to be out of balance as they have a special relationship to each other. I love this form of medicine as everything is interconnected. Please consider this - www.acufinder.com to find a certified practitioner near you. Best wishesDOM
    acuann 3,080 Replies Flag this Response
  • Hi Ray, There is a lot there that might point at b12. If you want to have a real b12 trial you need to try methylb12 from either Jarrow or Enzymatic Therapy, the two by far most effective of 10 brands tested. On page 42 of the long b12 posting over on medical stories, is a reasonably complete list of b12 symptoms and also a discussion of the various cofactors needed for the b12 to be able to correct the problems.
    Freddd 3,576 Replies Flag this Response
  • Thanks for all your help. It all seems to make sense but it's odd that I've never had this happen before! I've been sick and on antibiotics in the past but never had to deal with these after-effects (and such a wide variety of them). The antibiotic they gave me for my bronchitis was Ammoxicilin. It was only a week's worth of pills. But I am also on two meds for my Crohn's, Asacol and Purinethol. These act as Immunosuppressants to fight the Crohn's in my gut. I guess I just got "invaded" by a bunch of crap that took advantage of my body's weakness. I am trying to eat better (although I don't want to give up my sweets... lol) and I am taking B12 supplements to see how I do. I'll keep you posted on my progress.
    Spitfire 6 Replies Flag this Response
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  • The antibiotic they gave me for my bronchitis was Ammoxicilin. It was only a week's worth of pills. But I am also on two meds for my Crohn's, Asacol and Purinethol. These act as Immunosuppressants to fight the Crohn's in my gut. Well, you have your answer right there. Taking the immunosuppressants have kept your immunity suppressed, and taking antibiotics on top of that can further cause impaired immunity. Consider trying to find a naturopath or OM doc who can get you back on track - autoimmune diseases are tricky, but they are very well treated with holistic medicine. Eleuthero Ginseng is an adaptogenic herb that is helpful for both impaired immunity and hyper immunity as it balances the body out either way...look into this as well as Reishi mushroom, which is excellent for boosting immunity. Can't recommend NAET highly enough for your Crohn's - the immunosuppressants are doing NOTHING to heal you and are only keeping your symptoms at bay. NAET can get to the root cause of this disease... Best wishesDOM
    acuann 3,080 Replies Flag this Response
  • I support acuann'a advice 100%. I was very ill. I went to Bioset treatment. I have only had 4 treatments and my symptoms are 70%-80% better than they were. I, like you was having many symptoms and this therapy was the only relief I found. Your body is rejecting many things. When this happens, it is like you are "allergic" to whatever it is. If your body does not "respond negatively" to something, then you are not "allergic". I was "allergic" to many things. Certain foods such as bananas, peppers and lettuce would "kill" me if I ate them. The next am after my first Bioset treatment, I ate a banana for the first time with no stomach ache, nausea or cramping. I am now eating one everyday due to the amount of potassium my body requires and the many other health benefits they contain. Lettuce and peppers are now a part of my everyday salad.:D If you take nothing else away from this forum, please let it be the advice of some pretty sick people who have tried a "new therapy" and had positive effects. NAET and Bioset work...regardless of who comes here and says it doesn't. Try it, you'll see...mommy cat:)
    mommy cat 1,654 Replies Flag this Response
  • Hi Spitfire, Actually it makes sense that it happened when it did. The b12 "crash" usually happens during or after another stressor. I have had a cold, many illnesses, physical injury, vaccination and pain itself above a certain point trigger a crash that lasted months to years past the triggering incident. From there on your immune system doesn't work right, there is inflamation in any and all of your endothelial and epithilial tissues and all sorts of things cascade and it is one thing after, or on top of, another, and nothing really gets better and heals. THat is one of the problems in diagnosing b12 deficiencies, they look like 50 other things. B12 deficiency can manifest with any combination of over 200 symptoms and signs. Which ones you have at the moment, and they are always shifting around and changing, determine what diagnosis your doc(s) will fix upon and treat you for but not really effectively because the cause isn't being treated. Good luck.
    Freddd 3,576 Replies Flag this Response
  • In the topic of food sensitivities I have some experience. My digestive system was very ragged, easily irritated by many many foods, IBS, reflux, frequent vomiting, with burning red tongue, mouth pain and sores, sores down my throat and an ulcerated larynx. After 4 years of healing with methylb12, adenosylb12 and cofactors, and finished off in the last 4 months with methylfolate, my entire oral-gastro-intestinal pathway has healed from top to bottom. My only remaining food sensitivity is milk and cheese. I didn't have any of the therapies mentioned here. However, the nutritional program and exercise allowed my body to return towards normal. In 4 years I have physically come back from a complete basket case and 16 years of inactivity. I had severe fibro made worse by exercise. I had lot's of medical therapies most of which were useless or worse. When I had the pharmacy interview at the pain clinic I had three pages I had prepared of all the drugs tried and their effects or lack there of and side effects. Most just made things worse. My chiropractor helped most, at least with the pain of my damaged spine from a car wreck. I had a kink in my back that stuck out and felt like a right angle at T11. It took years of 2-3 times a week adjustments but that is all back in place and no longer a source of pain. It no longer sticks out and can barely be felt. It's where I had 3 fractured vertabras. After my muscles became more normal with methylb12 and adenosylb12 they no longer pulled my neck into a reverse curve causing much pain. I am an inch taller than I was 30 years ago. My blood pressure is often down to 104/65, what it was when I was on the patrol. I sink in water when I exhale for the first time in my life. I can do 45 minutes plus on the Nordic Track, not what I could do when I was a pro ski patrolman and 37 years younger, but I didn't sink then. My muscle is now leaner. If you can't find adenosylcobalamin at the healthfood store, try a nutritional supplement store aimed at bodybuilders. Dibencozide is what adenosylb12 is often called. It is said to promote lean muscle growth. It sure has for me. In 4 years I have returned physically to where I was at 39 before the crash in many ways. I am setting out for this year to restore my body to the good conditioning I used to have. I am back into all my suits of that period. Another 25 pounds off and tightening up my abs and I'll be able to be in my light green brushed denim hiphugger bellbottoms. Isn't that just a slightly scary thought? I also have a few wonderful business suits from that size too that aren't scary. This "normalizing" of my body was quite unexpected. L-carnitine fumarate was the key to that after everything else except methylfolate was in place. It is involved in the krebs cycle of oxidizing fats for energy in the mitochondria with adenosylb12. The first MDs I've ever been to that approved of my chiropractic therapy was my pain docs because it worked. It doesn't mean they thought that the chiropractic theories were right, just that they were accepting the pragmatic results of that particular physical therapy. Correct the nutrition and give the amounts of all the essentials and traces needed for healing, eat well and exercise. There are many theories as to why to do each of those might help and some disagreement about what and all the things do. For instance, since the idea of detoxifying the body has come up, it might be important for to consider what methylb12 does. It is a strong detoxifier. It combines with toxins like cyanide and is then excreted as cyanocobalamin. Cyanob12 does not detoxify. It is one end result of detox and is excreted. Methylb12 protects the neurology against many toxins from nitrous oxide to nitroprusside to arsenic, cyanide, glutamate, botox and others. Mercury destroys methylb12 with 80% of the neurological effects of mercury being the neurological effects of methylb12 deficiency. Good luck.
    Freddd 3,576 Replies Flag this Response
  • There are alot of good knowledgeable people on this site, but I must say I cannot BELIEVE you just fell in to the whole NAET trap. You just let three people (mommy cat, fruity, and acuann) come on here and convince you that you have something you yourself said doesnt seem to fit. NAET is a scam. All of the posts they direct you to read are THEIR posts. They are feeding you information and you bought it hook line and sinker. Why dont you read Fruitys post on "recalling REIKI" under I cannot get a diagnosis. She sees and hears "things/people? Im just stating FACTS here - you yourself wrote the thread. I am beginning to wonder am I the only normal resonable person on here? My advice? You play with fire you are going to get burned.
    Anonymous 42,789 Replies Flag this Response
  • To the previous poster: I came on this site looking for any help I can get... these symptoms I am having are worrisome. I am assuming that I am not being fed BS by people on this site. I can't help but being naive because I don't know what to make of myself right now. The stuff mentioned by mommycat, arcann, and eatafruit can't be bad for my health by any means... who's to say they are wrong? I doubt the remedies they mention are harmful!
    Spitfire 6 Replies Flag this Response
  • Hi Unregistered, Yep, I just read up on NAET. It does sound pretty fruity to me, or perhaps just another form of desensitization with repeated exposures to the allergen and a heavy dose of BS. I did a desensitization course for poisen ivy years ago, seemed to work without any meridian pressure or any belief or any fruity theory. However, the whole thing does sound pretty fruity the way it is described.
    Freddd 3,576 Replies Flag this Response
  • Fredd, "Don't knock it until you try it"In western culture, we easily dismiss many ideas if they don't include a consult, a test, a diagnosis and a pill. I've done Bioset for only 4 treatments and my symptoms are 70-80% better than they were before I started.By the way, many of the mycoplasma related illnesses have B12 defeciency as a symptom. It is not the defining diagnosis, it is infact, a symptom of a bigger picture.Hope all is well for you...by the way, why are you here? Are you having trouble getting a medical diagnosis too?mommy cat
    mommy cat 1,654 Replies Flag this Response
  • Hi Mommy cat, I have no idea if NAET works. Perhaps it helps remove blocks to the free flow of energies in the body. However, the theory sounds a little loose. That doesn't mean it isn't pragmatically useful. If you read over on the long b12 string I have had problems getting diagnosed for 59 years. I'm 59. My most recent was asking one of my docs to prescribe metanx for the methylfolate. I hadn't been able to locate a vitamin source. This was based on the continuing blood abnormalities on my CBC and several other continuing symtoms when all the others had receded with methylb12, adenosylb12 and a load of other cofactors. I was taking 1600+mcg a day of folic acid for 4 years. His reasoning was "How could I be symptomatically folate deficient while taking folic acid in significant quantity". I located a vitamin source and took it anyway. After three months of a slow titration my blood abnormalities were headed in the right direction. In a couple of weeks I get to tell this doc of my results. Other things have healed to. This may be the end of the road on misdiagnosis for me. In another year I'll know what's left. Other than longterm neuropathic damage and pain attendent to that and damage from a car wreck, I don't have enough symtoms and signs left to get a hold on anything, assuming that my blood abnormalities fully correct by my next test in 5 months, and they are all folate/methylb12 releated blood abnormalities. The methylb12 didn't fix it at all. Methylfolate started working on even 400 mcg a week to start with. Lack of methylb12 slows down nerve transmission speeds, can cause demylination and nervous system malfunctions and many immune system problems. For many the problems are in the genes and are highly heritable setting the stage for a host of secondary problems. Infections of all sorts are more likely when lacking methylb12. Inflamation of the oral-gastro-intestinal tract from one end to the other is characteristic of methylb12/methylfolate deficiencies making it vulnerable to all sorts of things. Good luck in your healing.
    Freddd 3,576 Replies Flag this Response
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