Discussions By Condition: I cannot get a diagnosis.

Please help me!

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: kurtwalker
  • March 20, 2011
  • 10:09 PM

Hey all,

Since last summer I've been suffering from some bizarre headaches which bring with them a slew of other curious and debilitating symptoms. Which include handicapped concentration, indigestion, constipation, etc. But before getting further into the symptoms I have now, I'd like to draw a timeline which traces their progression might make it easier to figure out what exactly is going on! I digress:

July/August
I am working construction and enjoying life. Suddenly, I start to notice that I am getting strange headaches but only on the weekend, where my lifestyle is significantly different from working during the week. These headaches are completely atypical and unlike what one would normally describe headaches as. Instead of feeling irritation at the front of my head, the epicenter of the irritation is in the pulsing veins at the side of my head. The most debilitating symptom of all is that my sense of focus and place is completely ruined, leaving my in an irregular state of consciousness that slows down my ability to engage with anything remotely intellectual or visual (ie: cinema, books, etc.). I visit my family doctor about this and he tells me I need to eat more during the week (mon-fri) to compensate for the weekend (...I didn't fully understand this diagnosis either, as I was already eating a plentiful diet of food).

I continue on, bearing with the weekend based symptoms until I start to realize the symptoms hitting me at work. This is where it started to become dangerous, as the lack of visual concentration and interpretation on a construction site is simply unsafe. I decide to go to another doctor about this, and he suggests that I am not getting enough protein in my diet. He recommends I start having protein bars & shakes, he also thinks that these symptoms will subside once I am in 'university student mode' come September. I follow suit but achieve no alleviation in doing so.

September/October
September arrives and I don't make it into the school I was planning to go to, so instead I continue with construction. Symptoms are still consistent and even on the days where I feel 'normal' I still sense that my state of consciousness is irregular and the interpretation of information is no longer seamless.

October arrives and I decide to take time off work to attend a film festival. Amidst this event I am hit by a sort of evolution of my symptoms. The headaches now arrive with bloating, where it feels as though my stomache is pumped full with 'air', constipation, and indigestion. It is now impossible to focus and fully interpret anything, let alone a film. I stay inside for a few days and visit my family doctor. He's confounded but notices that my long distance vision is poor and recommends glasses. I get glasses, but the symptoms persist.

November/December
November arrives, and I make the decision to stop working due to how debilitating the symptoms have become. Now they are hitting my in what seems to be 1-2 week intervals, where for 2 weeks I'll be bed-ridden then one week I'll be feeling better, but not entirely normal. I continue waiting around, twiddling my thumbs, hoping that things will go away.

December arrives and I spend practically the entire month inside pummeled by the headaches & indigestion. I schedule another appointment with my family doctor, and this time he suggests it's migraine & acid reflux caused by a food allergy. I intuitively disagree but follow his commands that reach no end.

January/February/March
In hopes of reparing my health in time to go to school for the spring semester I go into the emergency room @ the local hospital. here I get a CAT scan that notices nothing wrong. The doc in charge forwards me to see a neurologist at the end of January. I am thus forced to drop out of school and continue to wait around for a diagnosis.

At my neurologist appointment the doctor is confused but a little more confident than my family doctor. He orders a stool test, an EEG, MRI, and prescribes me to a neurological drug called Gabapentin. The stool test comes back positive for a microscopic parasite. I take the necessary antibiotics yet achieve no change in symptoms. I go back to waiting around inside, as my appointments with specialists are 1 month apart. Come February, and I've noticed that the headaches and indigestion have become slightly less intense, but even still, my state of consciousness still feels displaced. I get my EEG test done but receive negative results. At this point, I begin to suspect the possibility of having a tapeworm, just in the way some symptoms line up. The possibility of having another intestinal parasite is confirmed when I find a small specimen from my behind which resembles a slightly longer piece or rice (about a half inch).

In my next appointment with my neurologist he decides to set up a appointment for me with a Gastroenterologist. The G.I. doc is confounded and entertained by me and my neurologists speculation that the headaches and the indigestion are inextricably linked. He orders another stool test and a Colonoscopy (in May, no less..). Which brings me pretty well up to date: I have completed and submitted the stool test with the previously mentioned specimen included, but have received no word back almost 10 days later, suggesting that the results were negative. So I am currently awaiting my MRI and Colonscopy in hopes of finally reaching a diagnosis, and the most frustrating part is that I'd like to move away and go to school in September, but that might not be a reality if the pace of things remain as they are currently. Anyways, in case this timeline doesn't fully articulate my symptoms, i've included a point-form list below.

Symptoms
- Bizarre headaches, irritation centralized to the pulsing veins at the side of my head.
- Occasional burning sensations felt at the back and top of my head.
- On a daily basis I hear a "clicking" sound (think of the sound of the spark your finger makes with a charged object) coming from my head.
- The largest result of these headaches is a confused state of consciousness where nothing feels as though it's entirely happening. I feel as though I can only visually concentrate on one object at a time, and the speed of visual interpretation and reaction time is severely crippled. Intellectual activities have become very difficult.
- Indigestion which makes it feel as though my stomach is full of "air."
- As a result, I have to burp, belch, and ***t to get a sense of "release." When I do all of these things it triggers my stomach to make a reactionary noise. Also: this is not conventional burping, it sounds like liquid inside my throat is gargling at the same time.
- After meals (full ones or just snacks) the skin at my waist where ones pelvic bones protrude feels very sensitive. This is the find of sensation I'd imagine a person who is starving or malnourished might feel.
- I also get constipation, and when I have bowel movements it never feels as though I am entirely "finished" but no matter how hard I try to get more out it doesn't come, so I am forced to thoroughly wipe and move on.
- I also get occasional discomfort, irritation, and itchiness in my behind area. As well as small bits of blood on toilet paper after wiping.
- Miscellanious things i've noticed: twitching of random muscles & left eyelid, small bits of blood left on kleenex's used to sneeze, loose light brown stools, occasional green stools, etc.

Speculation
- Tapeworm?
- Celiac disease?

I really appreciate anyone who has read this or is willing to lend a hand in speculation. Really–– thank you.

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9 Replies:

  • also, I've had tons of blood tests: Thyroid, Hypoglycemia, Diabetes, etc.thank you.
    kurtwalker 4 Replies Flag this Response
  • Hi Kurt. I am new to this board/forum as of tonight even-:)! Anyhow I just wanted to post somethig in reply, to your post. I am not a doctor however, has any doctor ever checked you for "Carotid Artery Disease?" These are arteries on each side of your neck, right below the jaw line. These are blood vessels that supply oxygenated blood to the large front part of the brain. This is the area where thinking, speech, personality, and sensory and motor functions reside. Typically a doctor when he checks for this, "should" listen with a stethescope type istrument on each side of your neck. They can also order tests such as: Ultra Sound, CT Scan, and things of this nature which are better at ruling these types of things out. Unfortunately a lot of doctors do not make listening to the Carotoid arteries, part of any physical or exam which I think should be just as automatic, as a weight that is checked at each appointment. My step-father 10 year's ago, who had been healthy all of his life came in off the lake one day after fishing and said, "I have the worst flipping headache I've ever had in my life", and went to lay down. He didn't come off the lake unless he had to due to weather as a rule. My ma made him a doctor appointment, and they listened to his Carotoid arteries in his neck during a physical-only because ma asked them to do this! "The doctor listened to his Carotoid Arteries in his neck and said, "They sound okay." However the next week he had another headache like this, only my ma noticed in hind sight over time he was forgetting things-not big things but many small things, and he was more irritable than usual. (At the time she figured it was due to his headaches.) To make a long story short my ma was insistent with the doctor and clinic. They finally did an Ultra Sound and saw a 70% blockage in one artery on one side and a, 60% blockage in the artery on the other side. They had to do surgery to try to clean these out. During the surgery, my step-dad had a stroke on the table. He was 60 year's old then. He did live, but has no use of his left side now as a result of this stroke. He walks with a walker, talks, and feeds himself and things of this nature but my ma has been his sole caretaker for the last 10 year's now. I am not trying to scare you but, maybe ask your doctor about checking your Carotoid arteries. Back when my step-dad had his original physical, before the discovery of these blocked arteries the doctors did not check these as part of a regular physical. My ma had to request that they listen to these with the stethescope and, then after his second headache insisted that they do an Ultra Sound! I don't know what to say about the stomach issues Kurt. Possibly a couple of separate issues going on? Keep us posted if and when you find out anything.
    Parentof1 2 Replies Flag this Response
  • Hi there... I'd think your symptoms are probably all linked due to the way it seems to be developing eg some condition slowly worsening. I suggest working on try to fix the symptoms you have even if you are waiting currently for a proper diagnoses of what is causing all of them. Whatever you have may become clearer if it develops more. Constipation can give one headaches and mind fog (affect concentration etc) .. due to wastes/toxins.. not being able to be released as well. For the constipation, its best to be taking something regularly for it. I suggest daily or twice daily fibre supplements (the ones you mix with a glass of water). Also make sure you are drinking lots of water anyway when it comes to things like constipation. " it never feels as though I am entirely "finished" but no matter how hard I try to get more out it doesn't come," that does sound like constipation too. For your issues too I suggest you go and get some good probotics to take (which will help the bowel and also may help with the bloating). Bloating and constipation.. may be a form of irritable bowel syndrome IBS. What most dont realise is that there are three types of IBS.. diarrhea predominate, constipation predominate and IBS which is variable. IBS can appear as part of many other illnesses. Your post if it isnt parasites.. does sound like you have possible now got IBS as part of your issue. Also if you havent already.. get some thing to take which is sure to get rid of tapeworm and other parasites.
    taniaaust1 2267 Replies Flag this Response
  • Parentof, thanks a ton for a reply, but I've been thoroughly examined by my doctors two to three times in the last few months, so I don't think that is the problem. I will however, ask my doctor at my next appointment to double check. Thank you for your concern.taniaaust1, I'm definitely gonna try those things out-- but are they non-prescription things I can just grab at a pharmacy? also, my Gastro doctor did mention IBS as the main possibility, I just forgot that diagnosis until now. As for the tapeworm business... the stool test came back negative, with that white sample included and everything! Is it possible that a still could have a tapeworm despite not showing up on two seperate tests? and there seems to be many different methods in getting rid of a tapeworm-- which one might be considered the definitive route?thanks guys!
    kurtwalker 4 Replies Flag this Response
  • Parentof, thanks a ton for a reply, but I've been thoroughly examined by my doctors two to three times in the last few months, so I don't think that is the problem. I will however, ask my doctor at my next appointment to double check. Thank you for your concern. taniaaust1, I'm definitely gonna try those things out-- but are they non-prescription things I can just grab at a pharmacy? also, my Gastro doctor did mention IBS as the main possibility, I just forgot that diagnosis until now. As for the tapeworm business... the stool test came back negative, with that white sample included and everything! Is it possible that a still could have a tapeworm despite not showing up on two seperate tests? and there seems to be many different methods in getting rid of a tapeworm-- which one might be considered the definitive route? thanks guys! Yes you can grab the things I mentioned in a pharmacy.. umm good tape worm medicine, I arent sure if you need a script for that thou. I do know there are some natural ones which Ive heard people say are great advertised online thou so you should be able to get something for tapeworm without a doctor. Just do some research and speak to your pharmacist (tell them you thought you saw an tapeworm egg). It is quite possible for one to have a parasite and it not show up with faceal tests. fibre supplements may even be available in your supermarket (look in the health section of it). (try fibre supplements always before trying laxatives.. as laxatives can weaken your bowel, where as fibre supplements are harmless).
    taniaaust1 2267 Replies Flag this Response
  • I forgot to reply about the probotics. They should be available from the pharmacy without a prescription.
    taniaaust1 2267 Replies Flag this Response
  • An update:- I've started taking Probiotics and Metamucil 3-4 times a day (each) and have noticed no change in symptoms.- I went to my family doctor today to see if he could do anything to speed up this long and arduous search for a diagnosis and he kind of simplified and pigeonholed my current symptoms to being related to depression & anxiety I suffered from 4 years ago (and am long long over..). He said my indigestion is probably gutrot caused by depression (that I don't have) and that my visual concentration symptoms might be a newly developed deficiency or something. He was really grabbing at straws and was really arrogant in tone, regardless, I thought that these possibilities should be shared. Anyways, really appreciate the help guys. Would love to hear more thoughts on this.thanks.best,kurt
    kurtwalker 4 Replies Flag this Response
  • gutrot due to depression?? what in the heck is that? Is that even a medical diagnoses? Sounds weird to me.......... sorry to hear that your constipation hasnt improved. I still wonder if you have a parasite seeing you have ichiness and irritation where you do (could be also caused by a haemorroid which would also cause slight bleeding) but seeing you also thought you saw an tapeworm egg.. I still think you should make sure you've taken some treatment for that.........." Suddenly, I start to notice that I am getting strange headaches but only on the weekend, where my lifestyle is significantly different from working during the week." That should be a clue to something and could help you to work out what the issue is that has now developed into an all the time thing "I visit my family doctor about this and he tells me I need to eat more during the week (mon-fri) to compensate for the weekend" umm so in other words, you were better previously when you were eatting less????? If so, this points to it being a food related issue eg with food intollerances, the more you eat the food or certain combinations of things one is sensitive to, the more likely and worst a reaction one gets. Or maybe you were also eatting different food rather then different amount? It could also be an enviromental issue in which you had more of the thing at your home about you but which was less at work .. once one becomes very sensitive to something, one then reacts to it in lesser and lesser amounts and can start getting reactions in places in which one didnt previously.
    taniaaust1 2267 Replies Flag this Response
  • gutrot due to depression?? what in the heck is that? Is that even a medical diagnoses? Sounds weird to meI think it was more of a guess than a diagnosis. Still doesn't help me in any which way! I still wonder if you have a parasite seeing you have ichiness and irritation where you do (could be also caused by a haemorroid which would also cause slight bleeding) but seeing you also thought you saw an tapeworm egg.. I still think you should make sure you've taken some treatment for that.Okay, I think i'm gonna buy some Black Walnut online and give it a try. Will keep you guys updated."I visit my family doctor about this and he tells me I need to eat more during the week (mon-fri) to compensate for the weekend" umm so in other words, you were better previously when you were eatting less????? If so, this points to it being a food related issue eg with food intollerances, the more you eat the food or certain combinations of things one is sensitive to, the more likely and worst a reaction one gets. Or maybe you were also eatting different food rather then different amount? It could also be an enviromental issue in which you had more of the thing at your home about you but which was less at work .. once one becomes very sensitive to something, one then reacts to it in lesser and lesser amounts and can start getting reactions in places in which one didnt previously.While working construction I'd eat larger portions of the food I regularly eat, and this summer I gained 30 pounds (most i've ever gained-- i'm tall and skinny) via this lifestyle. and currently I'm still eating the assortment of foods I would of been eating in the summer: Sandwiches, Meats, Cereal, Spaghetti, etc. But I'll take the food intolerance possibility into consideration, as it all feels oddly connected to digestion.Also, another symptom I forgot to describe is that often 2 - 3 hours after consuming a meal it feels as though my esophagus is tightening!Thank you for all your help so far Taniaaust1!cheers.
    kurtwalker 4 Replies Flag this Response
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