Discussions By Condition: I cannot get a diagnosis.

My Ultimate Mystery-Please Help

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Anonymous
  • March 6, 2010
  • 02:16 AM

Hi My name is Dave. I am 41yrs old from the Vancouver, BC area. 6'8 260lbs. Here is my story among the countless others who suffer with misdiagnosis. I apologize for the lengthy post.

Its been 7 years now of countless doctors, therapists, alternative practitioners and to this day no one has an answer or even a clue for that matter. I have had back pain that started in low back7 years ago and has progressively worsened through the years to encompass my entire spine from buttocks to cervical. This in turn contributes to many symptoms across many areas of the body but primarily upper body.

The primary most dominant symptom is Constant pain in my entire spinal column that radiats outward. It is always there but varys in intensity brought on by motion and activity. Any activity, including just cleaning, laundry, cooking, stretching, walking around.
Needless to say my life consists of struggling work (office work now, came off as field technican) and then going home to lie down. The only real effective relief comes from lying down at least 6 hours. I am forced to work because disability doesn not pay enough to cover alimony and my basic life necessities.

Secondary and significant symptoms include in order of severity

Neck Pain
Numbing/tingling and pain attacks in arms hands fingers.
Fatigue and feeling Lathargic
Occasional skin pulsating up and down for about a minute
Occasional twitching
Balance Issues particularly when eyes closed
Ringing in ears
Brain Fog
Receding Gums
Temperature Fluctuations
Pain attacks in legs and feet

Tests Done- All are negative for anything significant

Multiple MRI's
Bone Scan with contrast
Approx 40 blood tests
Spinal tap (Lumbar Puncture)
Igenex Certified Complete Package LYME test.

Treatments tried-

Physical Therapies
Homeopath,Osteopath, Naturopath (and every path in between)
Pharmaceutical Drugs ( I hate these)

I have seen and or currently seeing a neurologist, Rhemuatologist, Orthapedic Dr.

All of these Professionals are dumbfounded. All therapies have not provided any relief.
Fibro Myalgia has even been dismissed 3 times from 3 different doctors

Final Words-
This is not in my head as some have suggested. If could trade this pain and life for one painfree i would in a second. I dont remember what a day without pain is like. I am 40 years old. I would rather be outside, playing golf, and doing normal things.
Other than the debilitating pain and constant fatigue, I am healthy meaning that I never get sick. Never get the flu , and rarely have a cough and cold. I take in countless vitamins and minerals and supplements. Tried detox treatments, and herbal remedies.

At this point, I would rather be told what i have with terminal illness than not knowing. At least knowing what you have you can fight and target it.

Thanks for your time in reading this post.


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9 Replies:

  • Please let me know what you find out. I am experiencing some of the same symptoms as you are. I have also thought maybe I have a chari malformation; (it's an issue in your spinal/near brain stem; like a narrowing).. I am about to try to do the $$$$ lyme titre.. I know how you feel.. it's horrible. IDK what is going on in my body.I am 34. If you search by my name in the forums; you can read my story/symptoms, and compare.thank you,Athena
    Athenaa21 13 Replies Flag this Response
  • Hello - I totally understand the frustration of not knowing. I started dealing with severe health issues at the age of 24. At the age of 30 I finally had to retire because I could not get through a few hours let alone a day because of the pain. I have a few rare diseases but they have taken me many years, doctors, tests, frustration, fear, act to get them. The latest one that I finally got after 3 years and 6 doctors has to do with my hips but it also caused a lot of back pain. It is called Protrusio Aetabuli which means my hip socks are too deep. When I move them they are being torn and causing a lot of pain. There is very very little info about this disease and even few doctors that know that it even exists.I also have a lot of the arm/hand pain you are explaining. I have been through lots more tests again before we finally found out the cause. The docs kept saying carpel tunnel even though all the tests were negative. I finally got to a neurosurgeon and had 4 hours of MRI on my brain while I was asleep. They diagnosed Posterior Fossas (swelling in base of brain against skull) and a syrnix in spinal canal (pocket of fluid) that is causing the carpel tunnel like symptoms. I am not saying that these are your conditions just thought I would pass along some more ideas for you. I was told by each doctor that they could not help me and that there was nothing any doctor would be able to tell me or help me. I do not take that answer very well so I just kept moving along to another doctor after another after another until I finally found some that could help me. It is hard not to get discouraged and give up but there is nobody that is going to be your advocate so you have to be your own. If you do not push for an answer and for help you will not get any. You have to decide that no matter how long or how many doctors it takes you will get an answer. If I can be of any more help feel free to contact me at darkeru@hotmail.com.Jenn
    Anonymous 42789 Replies Flag this Response
  • Hi Dave,Can you tell me a little more about your onset of symptoms; from what you remember?? Like what was the first thing that you noticed??? What came next? Where were you when this happened? What were you doing? (line of work; or other habits or situations that have changed)?I am VERY VERY interested in your case. I currently have a fibromyalgia diagnosis, but I find it very hard to believe. You stated your fibro dx have been dispelled; and that it is NOT fibro.. can you tell me how/why? I would like to dispell mine as well. I am going to post a list of my symptoms in this same thread. My email is Athenaa21@hotmail.com.Please put "wrong dx" in the subject line; as I delete all spam mails.. and I don't want to over look your reply. Thank you.
    Athenaa21 13 Replies Flag this Response
  • Dave - here are my symptoms.. sorry for the length of the post. I am trying to include everything so we can compare notes/tests. I think we have something very similar possibly going on and maybe we can find some common exposure or symptom, or test/blood result. I am committed to finding reasons as well.. Thank youI have been sick for about 10 months. At the time of my onset I was doing 3 different things which might attribute to my illness. 1. I was dealing in used clothing (thrift stores/salvation army) and touching clothes with God only knows what on them; reselling them to try to save my home.2. My grandmother was in the hospital and dying of cancer. I was visiting her; being exposed to whatever could be in the hospital3. Up north in a rural area where there was a farm/chicken coup which I walked into and began to clean (without a mask or other) and touched items, and breathed in the smell of feces/urine of every animal that could have possibly resided in this building in the 30 years it had been built. No living animals were in it at the time I entered; but several animals/rodents had made a home. there was various rat/mice droppings and other. It smelled like urine/death/decay, and in hindsight I absolutely should have worn a mask, but I was trying to clean my grandmother's estate and was upset and acting in haste; as other family members were not assisting leaving the task to me and my aunt; and it was a very large job.The only other side note is I stayed in a home which I laid on a couch which smelled like cat urine. Cat urine from an 18 year old outdoor cat that had pee'd all over, and even on a pillow I laid on several times. I was not trying to be impolite, so I dealt with it. My grandmother had passed; it was a time for me to be disrespectful or rude.My onset...3 weeks after my grandmother passed, and directly after handling used clothing, and after the farm...I developed stinging pains. The traveled around from my knuckle on my hand, to my scalp, would hit near my eye socket, and even my groin. They felt like a charlie horse, and stung. The quickly disappaited, and did not stay but a split second or two. I dismissed it; believing it was stress, or over exertion.The second symptom I experienced in the pains reoccuring. This time they lasted a little longer, hit my legs, the scalp, near my eye socket again, hands, and in my backside. They lasted a little longer; but again.. dissapaited.I then woke up one day (about 1 - 2 weeks later) with a stiff neck, like someone was CHOKING me. It was very taunt, tight.. and caused me much grief. I then got tinnitus. - it has alliviated only on a few occasions; but is pretty much with me 24/7. My tinnitus is mainly in my left ear (loudest) but does echo to both ears. I have had 2 eng's. 1 came up with a slight vestibular infection; the other -nothing.. so they say the med I took prior caused the first result; and that it is not my ears.. it is my "brain" ringing.. or other. it is not like when you slap your ear over your hand and make a ringing noise; it is more like a cricket to a high pitched bell jingling.. depends.. changes in loudness.. sometimes when you yawn and stretch hard.. and you "shake" when you stretch and your ears pop a quick second and you hear a ring.. - THIS IS THE EXACT PITCH i hear 24/7.. and it DRIVES ME NUTS! I went to see a doctor, and he told me he believed I had a esutation tube dysfunction, and treated me with an inhailable steroid and amoxicillian.The amoxicillain didn't take it away; but it did not seem to get worse.. it was no change. After the amoxicillian, it started to progress. I know had a few bouts of vertigo, pain in the back of my head near the occipital lobe, pain in my ear, like sensation, and knots in my muscle in my abdomen area, arms, and they are lateral.. meaning if I have it on one arm, I have it on the other.It seems like after the antibiotics, I got worse, when I wasn't taking them.I started to have muscle twitches/jerks, sleeping issues, and RLS/tingling numbness in my legs mainly, and some in my arms on occasions.I have palpatations or "spasms" like a "thump, thump, thump" that hit in my legs, and sometimes near groin area (or where your leg attaches to your pelvis).It is very frustrating as I was healthy before and never was sick more than two days, and now I've been ill fighting whatever this is for 10 months.To date I have been tested for (and tested negative for)ANA panel - negativeSclerodermahttp://kona.kontera.com/javascript/lib/imgs/grey_loader.gif - negativeLymphoma - negativeBlood counts - all good, high side of normal on white blood cell with no abnormalities; which they say is "stress"T3/T4 - normalASE (something like this) - normalC3/C4 - normalMRI of my brain and auditory - high contrast - normalMRI of my neck - normalUltrasound of thyroid - abnormal - 2 very small nodules; two small to byopsyAutoimmune diseases of the thyroid - negativeHeavy Metals/Urine/Ketonins - all normal - even did a 24 hour pee in a jug collection of urine - NORMALdisconnective tissue disorder - negativeSjourens (something like that) - negativeand various other blood tests; 27 in allEEG - normalENG - NormalAuditory test/hearing/hearing with the clicking - NormalSleep test - normal no apnea..I am getting another T3/T4 done this week; and an A1C as many in my family have type 2 diabetes MANY.. and a cymotgoublin (somthing like this) test. I am also scheduled for an EMG.When I mention to them that I inhaled all that stuff in the chicken coup I am told that is fine, and that is not why I am sick.My dog has also been ill, and was everywhere that I had went. she keeps testing positive for a bacterial infection (not identified) 3 times in 10 months, it has lead to pancreatitus, and now my dog is on insulin 2 times a day. It is not from table scraps, or a poor diet.. I feed my dog IAMS food, and she has pet insurance. She is a retriver mix and weighs 61 lbs, and is not overweight for her size. Pancreatitus can be caused also by a bacterial infection...I wonder sometimes the correlation between her illness and mine. I have mentioned this also, and it is always dismissed.. it is upsetting to me. I have had a lyme titre but it was negative. I do remember having a few bites on my leg during this time... they hurt more than itched.I'm wondering if there is anything else.. lately I've had more ticks/jerks/spasms, and weird heart flutters.. not like with anxiety attacks/panic attacks.. this feels like someone is reaching in my chest and squeezing my heart for a few seconds..My blood pressure is good.. my pulse does come back high on occasions, but I also have white coat syndrome since I have got sick, as I feel they are going to tell me horrible news or give me a test which will hurt very badly.I'm very scared. I am a 34 yr old, non-smoking, non drug using, no kids/pregnancies, white female. I do not drink. My diet is poor at present meaning I eat allot of lean processed frozen meals, or subway/fast food - as there is just me and the dog..., and I am overweight by at least 50 lbs I am looking for any input anyone could have as to what could be wrong with me. I want to get well, and reclaim my life. This situation has had me stuck, and feeling helpless, waiting to find out what will be my next symptom.. and next for the dog. I am not aware of anything being in my home that could be a problem. My younger brother lived here for 4 years; and does not have any healthhttp://kona.kontera.com/javascript/lib/imgs/grey_loader.gif problems. Sometimes I also sense a tightness in my chest or but no coughing, or other.. Thank you for your help.
    Athenaa21 13 Replies Flag this Response
  • Thank you for your replies.Im sorry for your illness and pains. It seems impossible not to be frustrated let alone have it overcome you. I know I seem at wits end. Recently my chiro suggested Crystal Deposit Disease. Interesting, but then as per research they would have found something in my lumbar puncture, or would have found kidney function deteriorating. Hard to figure things out when you dont know if and what tests you are missing. Its all a process of elimination now instead of guessing and testing.Wish I could give more insight. Logic states that if MRI and Xray dont show much or the traditional blood tests then we are looking at rare diseases and ones that can only be diagnosed with microscopic biopsy of the tissue since tissues are not readily seen with MRIs. Im convinced that its a disease as it continues to progress. Someone has suggested I try swimming again but just floating as it is 0 gravity and has helped give some relief to pain. Not an answer but some relief.
    Hightower 2 Replies Flag this Response
  • I guess I am curious how your condition is not Fibromylagia? That is what i am told I have and I know countless others who have the symptoms. My symptoms are VERY similar to your symptoms. I have also heard of "whipples" disease (have you been checked for this?) my guess is; if you had this.. it should have progressed by now. That is why I tend to believe you might have Fibromylagia. Or whatever ailment it is that I might have. Seeing as there is not an "antibody" for Fibromylagia; how is it that they dismissed it?Also have you checked in XMRV? Chronic Epstein Barr? Internal Candida Infection? CMV?
    Athenaa21 13 Replies Flag this Response
  • Also.. if you feel this strongly.. that this is a disease, then your next step is to go see an infectious disease doctor, or an environmental doctor. They will run about 50 vials at your first visit (much smaller than the normal vials you can have run).If you want answers.. They will find them. Right now; I'm too scared to go that next step. I'm 34.. it's hard to face my own mortality.. so I am babystepping back to my PCP as I have been having some GI issues as well..
    Athenaa21 13 Replies Flag this Response
  • Also.. if you feel this strongly.. that this is a disease, then your next step is to go see an infectious disease doctor, or an environmental doctor. They will run about 50 vials at your first visit (much smaller than the normal vials you can have run).If you want answers.. They will find them. Right now; I'm too scared to go that next step. I'm 34.. it's hard to face my own mortality.. so I am babystepping back to my PCP as I have been having some GI issues as well..Hi Athena,Reasons why fibromyalgia was ruled out was that 3 doctors including a rheumatologist ruled it out. 2nd- a major characteristic of fibro is a huge sensitivity to areas of touch. You can touch me everywhere with a significant amount of pressure and it doesnt bother me. Hence the actual pain is deep within.Thanks for the other names. I have checked them out but they dont match my symptoms that I can see.You have a good idea with the infectious disease doctor. although lyme has been ruled out. Hope you have done the $500 lyme test from igenex. This disease is misdiagnosed everywhere, and quickly dismisssed by alot of doctors
    Hightower 2 Replies Flag this Response
  • I do not have that heighten state to the touch either... But they claim I have fibro.. that's what they "labeled" me as.According to my doctor today; he stressed he feels I need to see an infectious disease doctor. He REALLY wants me to see one. Not for Lyme.. but because he said there are many things that we can carry in our systems, or be exposed to that can account for symptoms, or a combination of things. I just worry because he said they take 50 - 100 vials of blood.. I know they are smaller.. but I was just freaking out. Honestly.. if you want to know what is wrong with you.. to rule a bunch of things out.. This is the place to go.. I've heard it over and over.. from my neurologist, to my PCP.. they tell me if I really want to rule things out.. this is where you go. Today I went to the doc for what I thought was GI; and next thing ya know he is giving me an EKG, and a chest xray - needless to say; Athena had a meltdown and tears in her doctors office; which just will add to the I'm emotional; and this is all in my head theory.. lol.. The EKG was fine, the Chest; fine.. he is sending me for an echo cardiogram, and an ultrasound of my abdominal area. I didn't ask for any of this testing. I told him about a tightness in my abdomen that went to my chest and that I couldn't lay on my back.. I was thinking galbladder.. when pressing on me and measuring my pain.. he quickly went the other direction. I pray nothing is up with my heart. My pulse is always 104 - 111 at rest.. so this really worries me =(. I am thinking I do need that lyme test; 500.00 WOW.. was that also checking for co-infections? Or just for lyme? Cause there are other disease you can get w/o the lyme.. I guess.Another thing I have leaned towards is maybe I need an MRA; and need to check to see if anything adrenal is going on in my body.. these are other areas people keep coming back to.. saying.. maybe there is something here. And I here.. MS; sadly.. I thought this could be simply ruled out with an MRI; but I guess not... Best of luck to you; and please keep us updated with any additional symptoms and testing you have done; even if you test negative.. I know I will be following your case; as it is similar to mine in many ways. I will update you with what I find out.
    Athenaa21 13 Replies Flag this Response
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