Discussions By Condition: I cannot get a diagnosis.

It's like looking for a needle in a haystack!

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: kesaiserris
  • September 18, 2009
  • 08:11 PM

Okay forgive the length I tried to get everything in thinking it might help. I have been to a few doctors but financial problems have always made it difficult to pursue anything. I've also had an extremely hard time finding a good doctor and communicating to doctors, so any advice there would help so much. I tend to naturally joke and make light of things, it like an automatic reflex and so naturally I have trouble being taken seriously. Could I be having some neurological problems? Is anyone suffering from anything like me or does anyone have any idea whats going on?

Various types of seizure like episodes basically episodes that look like (Absence/Atypical Absence/Myoclonic/Atonic/Clonic) including auras and strange sense of something in my mouth, my grandmother has epilepsy but I have never been tested.

Intermittent muscle weakness (a little after my daughter was born I had a more serious episode where I couldn't walk but it was brief and for a bit they thought I might have transverse myelitis)

Either hyper or hypo reflexes

Terrible memory, particularly short term (its sucks when trying to get to a doctor for a memory problem and you can't remember you appointment!)

Intermittent heat insensitivity (ex. at a bbq we had to cook our own food people were jumping back and complaining how hot it was and I realized then it just didn't feel hot to me)

I had an episode in adolescence where I woke and found I couldn't turn my head the doctor thought I might become paralyzed I didn't I recovered but I never regained full motion and never found out what happened

I did this needle test (dragging a needle over my skin) to check me neurological and I only know I did not respond appropriately

Very poor attention span I spaced out and jumped out of a moving car! (I have been diagnosed with Severe ADD but they did suggest I might need further neurological testing and so they weren't sure if it might not be that instead)

My sense of pain is strange it can be overly intense or I can fail completely to respond to something obvious (lately its caused me to sleep in a position where I am really injuring myself)

I have been tested for Lupus and MS which I don't have and I do have thyroid problems Hashimotos Throiditis I am still not being medicated for this, though rather than high cholesterol I have low, I've also had and may still have Hypokalemia, I did have but do not now have Anemia (iron), I do have Orthostatic Hypotension (which I am sure accounts for vertigo, dizziness)

My eyes don't track properly if they even try to track, I can't use my eyes together so I use one or the other, usually though my right, together they produce a distorted image I have been told sometimes my pupils do not dilate at the same time, I frequently am missing parts of the image black holes and dots, sometimes colored dots, sometimes strait lines appear to waver, and occasionally I see afterimages, my peripheral vision is shot (the eye doctor said its age, which is a little scary being 28 I hate to think how bad it must be for people in their middle years)

Very strong sense of smell (freakishly strong like I can smell an unopened jar of molasses a few rooms away strong)

Clumsy, poorly coordinated can't even ride a bike

I had never had headache until I was probably 24 and then they have slowly been increasing in both frequency and severity

Increasing difficult following conversations

Constipation (can be severe) or steatorrhea

Gas cramps but frequent inability to pass gas

Cystic breasts and ovaries

Joint pain (knee, hips)

Pinched Nerves


Low muscle tone even if working out regularly

Impulse control (this is getting worse especially in regards to saying inappropriate things)

Dry hair, eyes, skin, etc. sometimes I am so dry my eyelids stick, or I start to gag b/c I can't swallow, the inside of my nose is usually quite dry if its not bloody (I don't have nose bleeds per se b/c it doesn't run out)

Numbness, tingling, poor circulation

Endorphin rushes for no reason (can be intense)

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3 Replies:

  • Me again I thought this was probably related to thyroid issue but I will mention anyways, extreme fatigue, obviously problems losing weight (I am not overweight really I am like 5'4 130lbs), long heavy periods and sometimes bleeding b/w (I can't take birth control b/c of the astronomical risk of stroke in my family, but if anyone can figure out how to make me have a normal period!). My ADD symptoms are insanely severe (the worst the people at Duke University ever saw but they thought it could be something with my brain too). I also have skin discolorations brownish they don't hurt or itch and they are flat they come and go and appear on my neck, back, and chest. I am as pale as a ghost and the sun just does nothing despite that my dad's side is Cherokee. Sensitive to meds I can feel a regular aspirin for days and get high on a normal dose of meds and even the smallest dose is usually too much. I have a bladder 3 times normal capacity and have to pee all the time! I can have an entire liter of urine in the bladder and not feel it. Once I was so constipated it showed up in an x-ray and it was just really severe and I didn't even know I was (imagine when I know I am constipated!). Randomly I was told my kidneys are small and not really in the right place, just off. Everything with me is always off a bit. I have had 3 EKGs in different places on different occasions and on two of them the doctor announced this is impossible and declared the machine must be broken (which is a bit unnerving). I occasionally run out of breath for no reason and no matter how fit I am I can't run b/c its instantly activates my digestive system.
    kesaiserris 35 Replies
    • September 19, 2009
    • 05:38 PM
    • 0
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  • I am sorry to ask this way, but...are you sure you did not have a stroke? I ask because I think the adolescent age temporary paralysis event was very-likely a stroke or aneurysm. It could have been a hypokalemia episode (will get back to that), but with your familial history and other symptoms I have concern. For example, the episodes you describe as epileptic (will come back to this for other potential problem), the needle test, your kaleidoscope vision, the fatigue (here I loosely encompass stamina), memory, no coordination (vertigo, balance, and eye tracking could all be a concussed inner ear, but I didn't catch anything about external head trauma), difficulty following conversations, Numbness, tingling, poor circulation, and impulse control are all symptoms that typically result from brain trauma like a stroke. Even the focus/concentration and anxiety type symptoms associated with ADD could be related here because of the frustration levels created by having difficulty with communication, processing, being accepted & understood, and getting help.Whereas some of your other symptoms like muscular weakness, myalgia, and constipation (from disturbed function of smooth muscles) are from your diagnosed hypokalemia. With more severe hypokalemia, flaccid paralysis, hyporeflexia, and tetany may result. There are also reports of rhabdomyolysis with severe hypokalemia, which I think you may have experienced, but may have been overlooked when you had your daughter leading the doctor's to look at transverse myelitus.I assume you know your dry facial orifices are Sjogren's syndrome, which is commonly linked with Hashimotos. Sjogren's syndrome also includes joint pain or inflammation (arthritis), Raynaud's phenomenon (the poor circulation), lung inflammation, lymph-node enlargement, kidney, nerve, and muscle diseaseI think you may have PCOS (polycystic ovarian syndrome) and the birth control pills do help with the menstrual cycle issues, but not with the weight. I had to go to a real OBGYN to make sure I could handle it with all of my familial history of strokes & heart disease and all of my additional symptoms and undiagnosed problems, but I have been on the BC pills for the last 15 years as of December.Another random problem that I think you are suffering from that shares some of these overlapped symptoms is Neurally Mediated Hypotension aka Neuropathy aka Postural Orthostatic Tachycardia. This goes along with your symptoms of Orthostatic Hypotension, not being able to use your eyes together (could be a few things mentioned elsewhere, but here I relate it to the exhaustion level), fatigue, Numbness, tingling, poor circulation (Raynaud's phenomenon?). http://www.healthy-holistic-living.com/high-pulse-low-blood-pressure.htmlLastly, I think you need to have your vitamins, electrolytes, and other minerals checked also to make sure they are all in safe ranges. This should explain your response to the sun and your endorphin levels. I have major vitamin B12, D, and DHEA deficiences along with very high cardiac and cortisol levels after years of my body dealing with undiagnosed random symptoms. With the hypokalemia, which has to be treated, you especially need to watch your calcium and magnesium levels.I hope some of this helps and truly wish you well.
    Anonymous 42789 Replies
    • October 8, 2009
    • 05:17 AM
    • 0
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  • Thank you so much for taking so much time to consider my question. I have not had a full panel on my vitamins lately but those I've checked Calcium, B12, and Potassium are fine, so my hypokalemia is gone and I've really improved my diet to be sure at least that I am getting enough vitamins, I can say before I was pregnant 2 odd years ago they checked my vitamins and they were very high B12 especially, the ranges are a lot lower now but still healthy. My iron in the past has always hovered just above anemia and I was in pregnancy anemic but afterwords I was back to just low normal.I have tried BC in the past and I just kept having my period, it went on for months, I already have enough probs with a long, heavy menstrual flow. Heavier lately. So I have to say it makes me cringe a little lol My mom at 51 has such heavy periods that all of her iron stores were drained completely! The doctor was pretty horrified and now she is on BC.In December I go to the eye doctor to check for Sjogren's Syndrome that's a possibility my doctor considered. And at some point (in the distant future) I get to see a neurologist. I could be having strokes I've thought of it, young people in my family do have them, a 30 year old cousin of mine went blind from a stroke and she was fit and healthy to start. I was tested for Celiac (one blood test, my bowel was never looked at, has never been looked at) and it was negative. My doctor is not willing to explore anything else digestive unless as she said I start bleeding from the **s. Oh she also looked at liver function said it was fine but I do not know the values. And she told me not to eat much fat if it makes me sick, but last time I did that while I did feel better, when I went to the doctor they were actually concerned at how low my cholesterol was but where I live now I'd have to be middle-aged before they'd check that stuff again. My blood pressure was surprisingly fine that last time too, every now and again once every few years it pops up in the normal range, not sure if its going to stay normal or not, in the past that's always been temporary, though I am happy to say I have felt less dizzy for the first time in a very long time though yesterday I had some problems again. It drops a lot while I sleep, when I was in the hospital they kept me monitored and ran in every time I fell asleep thinking I was crashing, so not much sleep for me! I think when I sleep diastolic is about 30 (then they'd run in and wake me, so who knows if they don't if it keeps going down) I can't remember systolic. I've always joked I sleep like I'm dead, literally at parts of the night I can't be woken up even if forcefully shaken or screamed at. I have that sleep paralysis thing too where I am awake (or feel that I am) and can't move or make a sound and I just have lie in bed until someone will get me up literally, its like being trapped in your body, I find it very terrifying so if you have a cure for that please tell me! It doesn't happen every morning or anything but its awful when it does.
    kesaiserris 35 Replies
    • October 9, 2009
    • 07:26 AM
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