Discussions By Condition: I cannot get a diagnosis.

very strange symptoms-any ideas?

Posted In: I cannot get a diagnosis. 18 Replies
  • Posted By: Anonymous
  • August 17, 2007
  • 07:13 PM

Okay, this is my first post here (obviously) and I'm at my wits end. I'm 25, married, and have been sick for awhile now, and getting progressively worse. I've been to so many doctor's who just want to shove pills down my throat and don't want to even try to get to the root of the problem. So, here's what my symptoms are: It started with a fullness in my throat, which felt like it was interfering with my breathing, but then it spread to the left side of my neck, which has been swollen and painful every since. It almost feels like something is "growing" there. Then, I started having strange neurological symptoms: forgetting things, forgetting how to spell words, can't remember how to explain things, forgetting people, places, and events that took place, and sometimes my own birth date. I get confused very easily, and can't concentrate on anything at all. Then, my limbs started falling asleep for no reason, just at the slightest odd positioning and or lifting them up in the air. Or, I'll sit for eh, ten minutes or so, and then my butt goes numb, completely. Then, my legs and arms are very weak and shake all the time (a tremor of sorts that suddenly appeared), and I am very uncoorinated all the time as my legs are weak, shaky, and numb and I fall down a lot and run into things. The same with my arms. Exercise makes it all worse. I also have lots of shortness of breath, so bad that I cannot speak a full sentence without taking a breath, and I can't sing anymore without getting very dizzy (I also have pressure on my chest right below my ribcage). All these symptoms are so severe that I have had to quit working, driving, or even functioning as a individual. My heart is also effected as it beats much slower than it used to and it feels like it can't keep up with my body at times. I had one incident about a month ago where my heart almost stopped and the ambulence (sp?) had to be called. They told me to go see my PCP, who promptly blew me off. I found a new doc and this one recognized that I wasn't getting enough oxygen and sent me for a chest X-ray and some bloodwork, and a CT scan of my chest. I've had one open MRI of my head w/contrast, which turned out to be a normal result. I've also had and EKG of my hear and stress echo, which came out normal, but with the exception that my heart tends to jump into a high rythym with very little stimulation. My CBC and electrolyte counts are normal, no diabetes, cortisol level is normal (for adrenal function), and we've tested urine and blood for heavy metal poisoning, which came up normal as well. I don't know if perhaps we should have done a closed MRI, because the images would have been better?? Perhaps then it would have shown something. I'm thinking that whatever is going on with me it has to be neurological, or some other disease that displays itself with neurological symptoms. I'm rambling and I know it, and it's because I'm so FRUSTRATED. I'm literally preparing to die, it feels like. My husband is at his wits end as well. Another symptom worth mentioning-I've had severe nausea as well and developed a sudden allergy to milk and gluten, and unexplained lower abdominal pain with frequency in urination.

I guess the bottom line is what I really want is a diagnosis, not pills. It's getting scary...and ideas? Sorry for the long post.

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18 Replies:

  • If you haven't already, see a neurologist as soon as you can.
    aquajay 6 Replies
    • August 18, 2007
    • 10:45 PM
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  • Hi unregistered,I have many if not all of your same symptoms and they were as bad as yours before I diagnosed myself with Chronic Fatigue Syndrome. My symptoms appeared after I had surgery to remove my kidney in Jan 07.Dr StAlmands in Marina Del Rey, CA, a CFS patient himself, has come up with a treatment with guafinisen or mucinex. Sounds crazy - just read about it. Dr St Almands has written a book that is great and there is a Gua support group on the web. Mucinex can't hurt you. I will tell you - you'll get worse before you get better.My symptoms have gotten tremendously better now - I can work. I'm a director for a large software company and the issues with my memory and disorientation were extremely troubling but I'm almost back to normal - well close.Please feel free to email me cperry2@tx.rr.com if you have any more questions or you would like to talk. I know how troubled you must feel - it is a very lonely disease.Even better news - the CDC has now recognized this as a disease and have begun doing extensive research. No answers yet but I'm keeping my figers crossed.Kind Regards,Christie
    Anonymous 42789 Replies
    • August 18, 2007
    • 11:57 PM
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  • The fact that you've suddenly developed allergies, nausea, along with neurological symptoms makes me wonder if its Chronic Fatigue Syndrome/Chronic fatigue immunity dysfunction syndrome. Then, my limbs started falling asleep for no reason, just at the slightest odd positioning and or lifting them up in the air. Or, I'll sit for eh, ten minutes or so, and then my butt goes numb, completely. I don't know if perhaps we should have done a closed MRI, because the images would have been better?? People with CFS often have low blood volume and hence body parts can be falling asleep easier than with a normal person. With CFS, a SPECT scan will show up less blood going to certain parts of the brain (up to 50% less than a healthy person) but often problems dont show up on the other brain scans (expect for some where abnormally does show on the MRI). Increased urinary frequency can happen in CFS too (20-95% of CFSers have that issue). I suggest you check out http://wwcoco.com/cfids/bernesx.html for list of symptoms and how common the symptoms are in CFS. CFS affects all the bodies systems. Ive been mistaken by nurses as a parkinsons disease patient at times due to it. With the developing allergies.. take care with caffeine as that also often seems to be a bad one and could be making you feel unweller. Have you found you are intollerant to alcohol?? (most ones with CFS have a problem with that too). If you want to find a doctor or someone who specialises in CFS to have this ruled out or not for you. Try http://www.co-cure.org/Good-Doc.htm or contact the CFS support group in your state or area and ask them for doctors recommendations.
    taniaaust1 2267 Replies
    • August 19, 2007
    • 00:43 AM
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  • Yes, that's funny-I have been intolerant to alcohol for awhile now. That actually started before I was sick; about two years a before. Then, I had a pregnancy, and about five months after I gave birth to my second daughter is when it all started. Funny thing too-after I gave birth I retained some parts of the membrane, and my midwife had to reach up there and get it out immediately after the birth. Since I got sick, I have had lots of pain with sexual intercourse and wonder if the pregnancy might have something to do with all this? Hm.
    Anonymous 42789 Replies
    • August 19, 2007
    • 01:58 AM
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  • I might be way off, but has your thyroid been checked?Btw, a cancer in this area would potentially cause symptoms, but not necessarily show up on labs....
    Anonymous 42789 Replies
    • August 19, 2007
    • 03:05 AM
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  • Sounds like a goiter and thyroid problems. I would have an endocrinologist take a look at you.
    Monsterlove 2921 Replies
    • August 19, 2007
    • 08:06 AM
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  • Have you ever considered chemical poisoning? What were you doing a few days before the first symptom, where did you go and what did you eat??
    Anonymous 42789 Replies
    • August 20, 2007
    • 05:54 AM
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  • Look up angioedema.
    aquila 1263 Replies
    • August 20, 2007
    • 07:24 PM
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  • Sorry to hear of your troubles. I have a daughter who is now 29 but when 17, was diagnosed with Multiple Sclerosis. You sound very symptomatic of either that with secondary conditions, which occur with M.S. (Multiple Sclerosis) or perhaps a brain tumor (sorry, I know that's hard to hear) but it's your brain that controls your swallowing, sensory perception, etc. With M.S., the blanket that surrounds the nerve transmitters in the brain are all deteriorating. Thus, interrupting all signals to the body and causing the patient to lose many normal functions. Tingling, numbness are a symptom, visual disturbances, headache, pain, etc. Go to NMSS.org and that will have a fountain of information of secondary conditions as well. This is an autoimmune neurological disease. Please see a good neurologist.
    Anonymous 42789 Replies
    • August 20, 2007
    • 09:26 PM
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  • Hello! Let me try to help. I was having TERRIBLE symptoms and lots of them. I was diagnosed correctly after years with chronic fatigue syndrome. All I can say is this, no matter what the diagnosis is, CFS, MS ect....NAET/Bioset therapy will help. I went for 6 treatments after someone in this forum recommended it and my symptoms are 90% resolved. Please let me know where you live and I will help you find someone in your area. No kidding, this works. When the doc explains it all to you, your lightbulb will go on in your brain like mine did.I have been a nurse for 15 years and NEVER would have believed this but I am living proof. Hope you are well...mommy cat
    mommy cat 1654 Replies
    • August 21, 2007
    • 03:21 PM
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  • Just the throat alone tell me that you are reacting to something.Are you on birth control pills/ shot?Were you vaccinated? did you have a flu before this started? or a car accident?Do you know if there is mold at your place? Did you recently painted? or installed a new carpet?Visit a doctor who practices NAET at NAET.COM.Best,Mar.
    Eatafruit78 960 Replies
    • August 21, 2007
    • 04:15 PM
    • 0
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  • I was on birth control pills for a year, and I was totally healthy until I took them. That's what preceeded my being sick-taking birth control pills for a year. I used to think that taking the birth control pills was what caused all of this. I had taken them before but not for very long-they always made me feel very moody and get very dizzy and sick. As soon as I stopped them, I always got better though it took me some time. This time obviously that has not happened.
    Anonymous 42789 Replies
    • August 24, 2007
    • 09:06 PM
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  • To me, the most important symptom is the fact that you are not getting enough oxygen. EVERYTHING revolves around this. The cardiologist or pulmonologist should be able to help you. Go off the b/c pills for a while, but still see the specialists.
    rad-skw 1605 Replies
    • August 25, 2007
    • 08:05 AM
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  • I would encourage you to see a Neurologist. It sounds similar to M.S.
    Anonymous 42789 Replies
    • August 31, 2007
    • 05:01 AM
    • 0
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  • I am new to this posting so please bear with me as this will be a long post. For my background I spent 15 years in pharmaceutical research before starting my practice as a nutritionist. I have been a practicing nutritionist for the last 20+ years. Your symptoms are very familiar to me. Most of my clients come to me with many of your symptoms. The symptoms that you are describing indicate deficiencies in both vitamins and minerals (most likely caused by the birth control pills but not necessarily). You state tat you are allergic to gluten and dairy. This indicates that your intestinal tract is not able to absorb the proper nutrition making your symptoms worse. It is imperative that you maintain a gluten and dairy free diet. You must also start on a good nutritional supplement program. Literally ALL of your symptoms are related to vitamin and mineral deficiencies. It is critical though that since you are allergic to gluten and dairy that you make sure that your supplements are also gluten free and dairy free. There are not many companies that can provide these. If you contact me by e-mail I will provide you with a more specific recommendation for what you need to be taking to bring your body back to a proper nutritional state. nutritionist:)
    nutritionist 14 Replies
    • September 1, 2007
    • 03:13 AM
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  • If you do find out what you have please reply back, because i have exactly the same symptoms, and all my lab work comes back normal. its very frustrating because i am only 24!
    -Jackie
    Anonymous 1 Replies
    • October 9, 2014
    • 10:00 PM
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  • Have you seen a neurologist? Many times, it's necessary to 'shop' doctors until we find someone who is interested enough to look outside the box. I agree, it is frightening if you were taken to the hospital b ambulance for your heart. Please let us know how you are doing in your search and improvement.
    Anonymous 1 Replies
    • November 1, 2014
    • 08:07 AM
    • 0
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  • Please contact me at adant@inbox.ru. I can't promise I can help but I will try! Adam
    Anonymous 1 Replies
    • December 1, 2014
    • 06:50 PM
    • 0
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