Discussions By Condition: I cannot get a diagnosis.

Is this lupus,MS,fibro or something else-help please

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Anonymous
  • June 8, 2008
  • 07:02 PM

In November of 2007; the day after Thanksgiving around dinner time I handed my husband a glass of water and heard a very loud popping sound coming from my neck; I felt really strong pain for a few minutes and the noise was so loud that even my husband heard it. That night around 2 or 3 in the morning I felt terrible pain in the back of my neck, head, numbness in my face, left arm, and leg I also had pain in the left side of my chest, blurry vision and weird sensations in my left eye, and very strong palpitations. I felt very weak. I thought that I was having a heart attack, so we went to the emergency room. My blood pressure was 140/90 and a heart rate of 120;(usually 107/85 or so) They did some blood work and took an EKG, afterwards they did a carotid duplex bilateral and a CT- CTA neck; the doctor stated that I may have a clot in the jugular vein and explained all possible outcomes; they admitted me to a room for observation they gave me a shot in my stomach that would help break up any clots. In wasn’t until 11:00am that a different doctor came in to examine me and said there is nothing wrong; I would follow up with your personal physician in the next few days.

After going home, I felt very weak and it took everything I had to bathe, get dressed or even drive, that feeling lasted about 2-3 weeks; after that I felt better and some time in December, I decided to find a personal physician; I explained to him that I have constant pain in the left side of the chest, difficulty breathing and terrible pain and stiffness in my neck; he recommended that I take Mobic and referred me to a physical therapist; I made several visits, but my neck did not improve, some times I felt worse after attending a therapy session; It also felt like I had fluid in my head, behind my eyes and in my neck; the therapist told me that it was probably not related and not to worry.
Through out the month of December I continued to have a lot of different symptoms, pain in chest, difficulty breathing, nausea; dizziness; some days I felt pretty good and some days were not so good. This continued through January with most days being good days. I had many sleepless nights with pain, numbness and all of the other symptoms that I mentioned earlier.
On January 21,2008; I experienced symptoms similar to heart attack and returned to the ER; they gave me a shot of something and said that it was “Atypical” chest pain caused by anxiety; I still had a lot of pain and returned to the ER once again on January 23 and January 25th; they tested my gallbladder, ran chest/thorax x-rays and determined that I had a small pericardial effusion/pericarditis and referred me to a cardiologist and recommended Indomethacin; I was scheduled for January 28th,2008 at this point I was at my weakest and could not even lift my arms, I experienced the most difficulty breathing ; and I could not walk more than a few steps with out getting extremely dizzy, nauseated, and completely out of breath; when I visited the doctor I needed assistance walking as the pain and the weakness where unbearable. A bunch of tests were performed and the weakness in the extremities continued to worsen.

At this point I was unable to work as I could not even get dressed and all I could do is lay in the bed, I lost my appetite as it was painful to even move my jaw to eat; the doctor recommended that I request medical leave from work as at this point; I could hardly move with out assistance and gave me some more medication. He performed lots of test EKG, Echo, stress test, tilt test and many other tests. All this testing and severe weakness lasted for about 2 weeks; I finally started to improve ; he said that he found slight sclerosis in the arteries and said that I had some minor issues with my lungs, possibly from second hand smoke but not enough to worry and recommended that I visit a gastroenterologist to determine the cause of my pain; I inquired about the weakness, numbness and tingling in my arms and legs and the stiffness of my neck and he said “drink a lot of water; you are probably dehydrated” So I asked him to remove me from my leave as I was feeling a bit better.
I was out of work for approximately 22 days and for the first 2 weeks it took everything I had to get to work and stay there all day; I would get off work at 5 and was usually in bed no later than 7:00 or 7:30; some times I was so tired and weak that I would go to bed at around 6:30pm.

I went to see my family doctor; who ordered an upper GI x-ray that confirmed that I had developed slight acid reflux or something like that from taking too many NSAID’S, so I was placed on Prevacid; which helped the nausea. I still am experiencing the symptoms explained above, plus other symptoms such as extreme fluctuations in BP; horrible tingling and pain sensations that begin in my head and go down to my legs (which sometimes wakes me up) blurred vision, occasional pain in the left side of my chest, muscle spasms and a few others; I was referred to a neurologist who has done a C-spine scan and a brain MRI; these came back “With no major issues” Since seeing him I have been on Zanaflex, Lyrica and Mirapex and still no relief or answers in sight; some days are good, some days I feel pretty good and find myself thinking “Yes, I am over this! But then it hits me again and I feel horrible.
I apologize for the length of my comments, but I am really desperate to find some answers. I will greatly appreciate any comments, advice or similar experiences.

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11 Replies:

  • Hi EFJS!You're story is similar to mine. But for me it was 4 years of diagnosis similar as you: acide reflux, fibromyalgia, tachicardia, irritable bowel, anxiety(this was for my nubness) Until i became very dizzy, more pain, more numbness, pain in jaw, chest pain, and i pass...I couldnt accept these diagnosis so i went see a specilised dr that find the causes of fibromyalgia, chronic fatigue etc..and all of the undiagnosed sickness. cause there is! Yu doN,t have all this and it is not reliate, don't believe it.....You want to know what i have... Lyme disease. Chronic lyme disease cause undiagnosed for years...i thonk you have it.Look at the symptoms here on canlyme,clck symptoms:www.canlyme.comThe thing with lyme disease right now is that it is misdiagnosed as too many sickness and also undiagnosed, by ignorance, and also, by money question....What am i saying??Look at the actions of the GENERAL ATTORNEY OF CONNECTICUT against infectious dr. These dr don,t diagnose lyme properly and the test they use is not good.LooK:http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284So you must find a LLMD, a lyme specialist that will pass u the good tests...trought Igenex, fry labs, the best places for it.Join lymenet and ask for help in seeking a doctor. http://flash.lymenet.org/scripts/ultimatebb.cgi?Lyme disease is unknown from people, i didn't even know what it was(im in Canada and it is hidden more) but it is a very bad sickness, that touch all the systems, that's why you do have problems everywhere...Please look at the movie coming soon about the subject, the epidemy and the controversy...Know that 30% remember a tick or a rash, or even have a rash. I don't remeber, but i have all your symptoms, i have lyme and i am recovering.http://www.openeyepictures.com/underourskin/uos_background.htmlTrailer on youtube: http://fr.youtube.com/watch?v=sxWgS0XLVqwPlease, look at the links ok...Some people here thinks us diagnosing lyme are crazy...We are not crazy, we are heart! I am very sick and im here for some people doN,t live the ***l that so many do by not being diagnosed....Some will tell u it is your thiroid, chronic fatigue...Whatever, you do what you want but your symptoms are specifically the one of lyme...Good luck...Fannie
    Fannou 111 Replies Flag this Response
  • They did some blood work and took an EKG, afterwards they did a carotid duplex bilateral and a CT- CTA neck; the doctor stated that I may have a clot in the jugular vein and explained all possible outcomes; they admitted me to a room for observation they gave me a shot in my stomach that would help break up any clots. In wasn’t until 11:00am that a different doctor came in to examine me and said there is nothing wrong; I would follow up with your personal physician in the next few days. Did the doctor state that he thought you may have a blood clot AFTER reviewing the data from the tests on your neck? If so, then I would question the other doctor's dismissal of this. Have they ruled out a brain tumor? I don't wish to scare you, but the symptoms point to this as a possibility. I would get further opinions on that MRI. What medications are you currently taking? Are you on birth control? Best wishesDOM
    acuann 3080 Replies Flag this Response
  • I have had the same thing going on for a year I am getting blown off by most doc's so if you get anything please post
    Anonymous 42789 Replies
    • October 14, 2008
    • 08:50 PM
    • 0
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  • You've made reference to a number of neurological disorders and one that is frankly, questionable as to its existance, but it generally infers that you are concerned that you may have a neurological disorder or disease. Realize that the most salient features of the signs and symptoms associated with neurological disease or disorders is the company that they keep. In other words, the significance is not in the presence of a symptom here or there, but a select constellation of signs and symptoms that tend to substantiate the presence of a specific disease or disorder. I've reviewed your symptoms and there does not appear to be an association that would give rise to any particular neurological disorder, certainly not MS or Lupus. As stated earlier, fibromylagia is very controversial and my professional opinion is that it is actually clinical depression by any other name. Although I'm not stating it to be the case here, realize that chronic or intense anxiety disorder can indeed produce very pronounced physical symptoms in the absence of an underlying physical disease and many patients find it most difficult to believe this to be the case, subsequently searching through doctors and laboratory testing hoping to pinpoint a physical cause that never seems to be manifested in test results. Your tests do not support the clear presence of disease and I would classify the results as unremarkable. It also appears to be the case that associations are being made between various symptoms that normally do not result in such combinations that would demonstrate an underlying disease. The ECG and other tests apparently did not reveal any cardiovascular disease of the nature that would place you at imminent risk of a cardiac event of any type, so you should sort of take a breath and relax from that standpoint. Your symptoms would not be associated with anything like a space-occupying mass such as a brain tumor. Neoplasms of this type generally produce progressively worse symptoms related to the brain area in which they are located, with no periods of remission, and pain is generally a very late-stage symptom. This does not share a resemblance to your range of symptoms. This is also not lyme disease or other tick-borne illness. Systemic disease of this type is not common at all and in over 40 years of practice, I've observed 3 cases of systemic lyme disease that were also successfully treated. Your range of symptoms also do not share any commonality with lyme characteristics. Incidentally, the popping sound in your neck is due to the release of CO2 trapped at the joint space and is very similar to the sound produced by persons cracking their knuckles as the term is commonly used. CO2 produces the sound under compression by forcing the joint against the normal range of movement. It can be reproduced after a few minutes. I do not believe there is an association between this event and your other symptoms aside from the fact that tension will cause restricted range of motion and the increased likelihood of causing the joint to "pop." I think you'll do yourself great justice here if you can step away from thinking this to be some type of neurological disease, which I have to tell you is simply not the case here, and more toward why the entire range of symptoms being exprerienced could be arising and fluctuating over the course of time mentioned. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • October 14, 2008
    • 10:57 PM
    • 0
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  • i cant say what is wrong with you but if you think it started with your neck.. why dont you go and see a good chiropractor? (get recommendations on one from others). Your spine may be slightly out of alignment and all your nerves run down your spine and hence chiropractors can often fix issues even sometimes breathing issues eg asthma etc by readjustments. My spine went out (when i picked up a brink) and I ended up in hospital for a whole week unable to move at all due to pain (I was screaming like a burns victim every time i tried to move).. I even went unconcious a couple of times while in there and woke up to find myself on oxygen due to that. Doctors couldnt find anything really wrong with my back (no pressed nerve) other than osteroarthritis in the area the pain was coming from. They didnt understand why I was going unconscious due to this. Fortunately on one of the occassions I went unconcious while in hospital.. the nurse missed catching me and I crashed to floor. When i came too.. I was completely fine.. my back felt much better and completely okay (I then left hospital against to the horror of the doctor who wanted me to stay in due to the unconciousness). I can only assume that my back must of had a misalignment issue, something I'd usually go to my chiropractor for (but the hospital hadnt allowed him in to see me).
    taniaaust1 2267 Replies
    • October 15, 2008
    • 08:33 AM
    • 0
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  • Neck pain is tough to deal with. Try here: http://www.wrongdiagnosis.com/symptoms/neck_pain/causes.htm
    aquila 1263 Replies
    • October 15, 2008
    • 05:09 PM
    • 0
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  • I read through your post and also the replies. I am not a doctor but I agree it sounds like panic disorder or acute anxiety.I have MS. I was diagnosed 3 years ago. It is a very complicated disease and varies from person to person but the symptoms you listed do not really go along with the disease as a whole. Believe me if you had MS you would know. You get hit with it to the point of hospitalization.I have a friend who had acute anxiety. Had to take a leave of absence from work. Palpitations ... lost tonf of weight ... couldn't eat or sleep ... everything hurt. Go to your doc and get some antidepressents or tranquilizers.
    Anonymous 42789 Replies
    • October 15, 2008
    • 07:29 PM
    • 0
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  • I have to disagree with JCottle, MD about your symptoms not suggesting Lyme disease or other tick borne diseases. Many people with Lyme have your symptoms. Neck stiffness, neck pain and popping can be indicative of Lyme. Of course, there could be a simpler answer, but please don't rule out Lyme. Your symptoms in general ARE possible Lyme. Lyme has been misdiagnosed for years because doctors don't believe the constellation of symptoms to be Lyme. My advice is to keep the idea of POSSIBLE Lyme disease on a possibility list. Until you get down to some answers, don't rule out possibilities. I also disagree with JCottle, MD about Chronic Fatigue and FMS. Depression is an awful thing and can cause lots of issues. But as someone with Fibromyalgia and Chronic Fatigue syndromes ... they can be caused by infection and disease. It took many years to get a diagnosis of Lyme disease and Babesiosis which do cause CFS, FMS, and breathing problems and pain, etc.-the list is long. It is not surprising to me that a doctor who hasn't diagnosed many Lyme disease cases over a lifetime of medical practice, also discounts CFS and FMS as anything more than just depression. I am not knocking depression as a serious medical issue, I believe it to be a growing problem, but there are many possibilities as to when depression can be caused by other maladies in addition to existing on its own. Had I listened to doctors who have not found many Lyme cases over many years of practice and didn't believe it to be a possibility with all my symptoms, I would be dead now. That is what scares me about anyone that discounts Lyme disease so quickly. Most of us with Lyme disease visited many doctors (in my case over 30 doctors over lots of years) who either misdiagnosed Lyme as something else, or didn't find any answers even though there were obvious physical problems. Over many years, this missing the culprit causing the illness can be devastating and very much add to the tragic worsening of Lyme disease and also make treating it much more difficult (a nightmare) in the long run. Don't rule it out, unless you find another answer that actually helps you get better!
    Anonymous 42789 Replies
    • October 15, 2008
    • 08:11 PM
    • 0
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  • I suggest finding out more about your blood, I know 1st hand lupus can affect your blood clotting factors I think that's a urgent issue.A Lot of illnesses and diseases are FIGURED OUT by lots of blood work,MRI's and hopefully a competent Doctor make sure you make a list of all your symptoms from as far as you can remember and with all the research you do online if anything sticks out with your similar problems just tell the doctor that's what you WANT to be tested for!!!!!and if they just blow you off keep moving.Its really awful that we need a doctor to believe in what we are saying just to be tested for life saving steps.We literally put our life in their hands and the sad thing is they don't know to much more that the average person its a guessing game at our expense. Stay strong good luck
    mae3057 50 Replies
    • October 15, 2008
    • 10:04 PM
    • 0
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  • Kendra, I hope you have been tested carefully for Lyme Disease. I was dx'ed with MS several times because of the severity of my illness, but later it was found to be Lyme. Lyme can be treated, there isn't much to help MS, so I am just saying... be careful to make sure. I hope you get better soon.
    Anonymous 42789 Replies
    • October 16, 2008
    • 07:12 AM
    • 0
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  • Hi,I dont know if anyone will reply to this post since it appears an ol thread but i thought id try. I am 33yrs old and mother of 3. I have been a soldier for nearly 14 yrs. I work out and altho my weight has fluctuated over yrs due to pregnancy and change in military jobs etc...i am not over weight. I have had severe edema during pregnancies and gestational diabetes but never high blood pressure. Little over a yr ago during intense 2week training...i began to swell in my legs...so much that i cudnt bear to walk. At night id elevate my legs n awake to swollen face but after standing for a bit...swelling moved back to my legs. I was prescribed a diuretic by the military docs which began to work in couple days all swelling was gone. This helped for a while but after bout 5 months i eud notice id swell still but just not as severely...but id swell pretty bad after long toad trip. I also experienced severe muscle spasms in my toes n legs that wud cripple me in pain. I associated those to the potassium loss from the diuretic. I also experienced a marked decrease in vision ocer the ladt couple yrs...i now have to wear eye glasses constantly where i never did before. I get dizzy when i kneel down then stand up or even just standibg from sitting position. Recently i have had my arm ho numb and cud see my hand engorge just from reaching over the side of bed to pet puppy. Im scheduled for a brain mri to rule out ms and a nerve study with ultrasound of heart as well. My mother died of congestive heart failure at age 40...idk if my symptoms are just stress or something real!
    Anonymous 42789 Replies
    • December 22, 2010
    • 04:55 AM
    • 0
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