Discussions By Condition: I cannot get a diagnosis.

Sick For Too Long With Too Many Symptoms

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: DemetriS
  • August 22, 2008
  • 00:40 AM

First off, thank you for your concern. I appreciate you reading my post because I am completely lost. My story is a little complex and so I'd like to put it into a time line, so you can understand it . I am 21 years old, don't do drugs and I live a healthy life.

When I was 16, I developed a headache that never went away. It affected my jaw, neck and forehead. Bending over would make it throb. I had chronic sinusitus at this time, I kept getting courses of anibiotics to fight sinus infections. I also had a weird spaced out feeling with my vision and was chronicly fatigued.

When I turned 19 I had all the same symptoms accept the spaced out vision. I now also had a constant tension in my shoulders, that never goes away, but does fluctuate in severity. I developed heart palpatations, and my heart rate would sky rocket just from moving a limb.

Now I'm 21. Things have gotten worst, i have all the symptoms above, and I thought they couldn't get worst. A year ago I developed a "chronic asthma." The only way to treat it is through a beta agonis rescue inhaler. cortico steroid does not work. I can't breath all day, every day. I have developed some weird neurological issues. Left side of my head and face go numb and tingle (especially when going to the bathroom). I get a weird shock feeling in my chest at random times. I get twitching in my hands and feet every couple weeks, and they ussually last for a week or so. Just recently, my ear began doing this weird thing where it crackles and flutters, every time I hear a sound. quite or loud.

I have had all heart disease rulled out. MRIS and CTS show nothing abnormal in spine and brain. Blood tests identify hypoactive thyroid and high EBV count. i have seen over 20 doctors including chiropractors, accupuncturist, natural path, etc. I havnt had eeg and ekg in over 4 years and no scans have been done with a contrast.

I need your help. Anything. Have your heard of anything like this? What was the Diagnosis? I am severely depressed and am unable to work at this point. My savings are depleting, and I need to figure this out. thank you so much for your concern.
-Demetri

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10 Replies:

  • HiI'm not medical, but do recognise some of your symptoms, due to my having some similar problems myselfFirst off, look up "Cluster Migraine" ......like you I suffered badly with what I thought was my Sinuses, 3 lots of surgery, frequent (I thought) infections, & the headaches etc you describe......then I read an article detailing different types of headaches....... the cluster headaches are debilitating, & can start with stuffiness & sinus like symptoms, spoke with my GP about the article, & she agreed to try the treatment on me...... (Sumiptripan) & it works......speaking with my ENT doc, he says that Cluster Migraine often is misdiagnosed as Sinus problems, & for someone like myself, who did have structural sinus problems, it can be difficult to diagnose, & can even set off Sinus infections........Oxygen therapy is as good as the drugs, but not prescribable for this in the UK.....but it does work, I tried it when in hospital....& the headache etc pretty much cleared instantly.Secondly, look into Fibromyalgia, & M.E., I have this diagnosis, & it covers most of your symptoms, in my case I don't have the chest problem, but I know of several FM sufferes who do have the same problem as you.hope this is of some help, & good luck getting answersXL
    Anonymous 42789 Replies
    • August 23, 2008
    • 09:48 PM
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  • have you had MRI/CT of the sinuses??what are the findings?Dr G
    Anonymous 42789 Replies
    • August 24, 2008
    • 06:10 AM
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  • I have had a lot of the same problems.I am 43, I have a problem with an overgrowth of yeast.A bacterial infection that responds to meds, but does not show up on bloodwork.Had a cyst that returned after surgery and popping in Dr office, Nystatin got rid of it, elevated ANA trying to get in to see specialist, the headache I have never stops.No one can seem to tell what is wrong, I feel better when I am on antibiotics.The headache did go away once after back surgery, when I was on duriceif, fluid drained from my nose, but started back 4 days after I ran out of meds. The pain meds do not help headache. good luck to you, I have been sick for about 10 years. Food allergies chicken and pork.
    Anonymous 42789 Replies
    • August 25, 2008
    • 02:57 AM
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  • Dr. G,The only findings on any scans I've had are unrelated to my symptoms. Things like deviated septum and inlarged adenoids. Those are findings from 5 years ago though. I worry sometimes that they are missing lesions in my spine or brain because they arnt using a contrast. And I feel convinced that I have some type of serious auto immune disease. I'm so drained and I have too many symptoms for it to be something minor. Do you reccomend I get an mri with contrast? what else do you reccomend?
    DemetriS 3 Replies
    • August 25, 2008
    • 10:41 PM
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  • Thanks for the replies. The sinus problems have diminished along with my decreasing of dairy products. The sinus problems are just what I remember having when all of this started. My symptoms are chronic and have never been absent since they started. They do however change. The headaches is throbbing on one day, and then tension and painful the next day. I ussualy go through "episodes" where my breathing will get worst, headache will start to throb, palpatations will increase and twitches in my limbs will begin.
    DemetriS 3 Replies
    • August 25, 2008
    • 10:42 PM
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  • Hi, I really dont know--but Ive been doing some reading and i think it is SOme kind of auto immune, maybe more than one--I say get an MRI with contrast and altho i dont know much ask about MS. and find out if lesions would have shown up w/o contrast. I had osteomyalitis (spine infection )and had many MRIs ALL with contrst, so i think thats importnt--Im so srry you are going thru this, post any results you get--do you have family support?
    Q-T pi 1 Replies
    • August 25, 2008
    • 11:12 PM
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  • I don't know if they would have found this already http://wrongdiagnosis.com/t/temporal_arteritis/symptoms.htm#symptom_list
    qwertyuiop123 453 Replies
    • August 26, 2008
    • 00:12 AM
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  • Possibilities: Pheochromocytoma, Schwannoma, huge list. These are the two I has seen with alot of the same symptoms. If not one of theres rare deseases then it may be in the family or more common related deseases. Good Luck.
    Anonymous 42789 Replies
    • August 26, 2008
    • 03:01 PM
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  • I wonder if you are allergic to something. Try here:http://www.medscape.com/viewarticle/554964
    aquila 1263 Replies
    • August 28, 2008
    • 06:16 PM
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  • Do you have any nerve problems? How about kidney or skin rashes? I am not a doctor but it sounds to me like you may have some sort of auto immune disorder or some sort of inflamatory problem. I have been dealing with similar symptoms for about 10 months now and I have an undiagnosed immune/inflamatory problem. Mine started with chronic sinusitis last fall. I started having really bad shortness of breath and within two weeks had extensive bilateral pneumonia that was resolved with prednisone. Since then I have had bad asthma on a daily basis, bad skin rashes including hives, neuropathy(nerve damage) and problems with my kidneys. Are you taking prednisone at all? It works great for inflamation, but it has horrendous side effects, and I can't stress that enough. If you are not in a life threatening sitution I would not recommend it.
    Anonymous 42789 Replies
    • August 29, 2008
    • 02:48 AM
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