Discussions By Condition: I cannot get a diagnosis.

I'm in so much pain! from head to toe!! Literally!

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: makahfili
  • June 4, 2008
  • 06:07 PM

ok, so the beginning of March i went through a battle with pneumonia, and then all my health problems maximized! Here's a list of symptoms that I have been experiencing..

weight/hair loss, anxiety, psychosis, chest pain, palpitations, lower/upper GI pain, constant heartburn and gnawing pain right above belly button (seems to be associated with my hiatal hernia, but pain has gotten unbearable at times), fatigue, waking in middle of night and not falling back to sleep (not normal, for I am a very hard sleeper), depression, panic attacks,insomnia, and muscle/joint pain, hair is dry and flaky. It sounds like alot, cuz it is! I need some advice on what it may be so I can have tests done, and get my health back on track so I can enjoy life as a mommy. I am miserable and it feels as though my organs are takin on alot. Please Please help!!!!

I have researched everything from thyroid to autoimmune.. best described with symptoms as some sort of autoimmune, but I dont know how to get the docs to test for that!

I'm also feeling pressure behind my eyes, feels like something is in them, last night there was this popping feeling behind my left eye that scared me! Whats going on with me?!

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13 Replies:

  • Didn't wrote you about lyme??Sorry we didN,t do before, as you say, you wrote more than once.I think you have lyme, bartonella(co infection)If Blaze doesn't give u the links, i come back tomorrow im sorry im dead and can't find these links now...
    Fannou 111 Replies Flag this Response
  • Try acupuncture - it works and is very effective for autoimmune dysfunction... Igenex labs is the only known lab that is reliable to test for Lyme - another possibility. More thorough testing should be done on your thyroid.Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Celiac disease-- you will need two blood tests, EMA and ITg. 5% of the time these are false-negative. If both are normal, ask to be tested for HLA DQ2 and DQ8.
    aquila 1263 Replies Flag this Response
  • Celiac disease??:rolleyes:Maby she is celiac too, i am too, but please, these are not celiac symtoms!You are not in panic and kind of psychosis with joint pains cause of gluten.I am celiac, i know!You must have lyme disease and see a lyme speciliast. Infectious dr don't believe in chronic lyme and don't have the good tests. Look at the actions of the General attorney of Connecticut against them:http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284A lyme specialist (LLMD) will make pass the perfect tests and will treat you has you need to. Go to lymenet to find a dr in your area. (look in seeking a doctor) http://flash.lymenet.org/scripts/ultimatebb.cgi?I passed throught all you're living now and also thougt about my celiac, my thiroid...NO! THESE PROBLEMS DOESNT DO PAIN LIKE THIS AND PANIC LIKE THIS!!! you are not crazy!!!Yes, maby for now try to avoid Gluten, and milk, anyway it is not good for lyme bacterias. And sugar, and cofee, alcool...It will help a little bit anyway!Good luck!F.
    Fannou 111 Replies Flag this Response
  • What meds were you prescribed while you had pneumonia? Are you taking any meds currently, including birth control, if applicable?DOM
    acuann 3080 Replies Flag this Response
  • ok... thank u all for giving me some ideas on what might be going on with me and how to pursue this never ending battle of pain and misery! ok, so I went into the doc and had some blood tests done.. what she agreed to test for this time was my thyroid stimulation test, sedimentation rate (inflammation), HIV, and Complete blood count... all which came back fine other than it shows I'm anemic. So with all these symptoms and these negative blood tests, I need some advice on where to go from here. I read someone else's post and someone hinted about mercury poisoning. I have mercury tooth fillings, and all my symptoms fit, including my previous diagnosis'. The main things I am speculating with all my symptoms are chronic mercury poisoning, Chron's disease (major family history with GI type autoimmune diseases), Chronic candida overgrowth (did home spit test, results showed IMMEDIATELY as the spit went into the glass of water, and possibly Lyme. The ONLY reason I'm speculating Lyme is that we have plenty pets, and Michelle posted before with IDENTICAL symptoms as I, and was tested positive... I'm in so much pain, and I'm afraid that with the pychological effects and the head/ear/eye prssure and my organs hurting, something serious is going to come of this before I have a chance of curing it!! Please PLEASE PLEASE if u have any idea whatsoever on tests, diagnosis, or whatever.. PLEASE let me know!!! I would greatly appreciate it!!! I need all the help I can get.. My babies need their mommy back in shape! I'm desperate!!:confused::(:mad:
    makahfili 8 Replies Flag this Response
  • Again, in between all of your testing for Lyme(get this from IGENEX LABS), thyroid and other I would recommend trying acupuncture to at the very least give you some pain relief and energy. Acupuncture works and is often the only thing that helps my patients with autoimmune dysfunction (fibro, RA, Hepatitis, etc). Can't recommend this highly enough! Also, since you have been diagnosed with anemia, please read the posts on B12 deficiency misdiagnosis - this can cause Soooo many problems! Do you have copies of your blood work? If not, then get them and look at your B12 range ("normal" is within 400-1100, a huge range). If you are under 350 I would ask for B12 injections and see if they help your symptoms. Again, read up on this, there is a ton of information on Sally Pacholok's post on B12. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Hi again...I really pasted trought all the questions you are asking...Here is my opinion:1-Crohn disease doesn't do all your symptoms2- Mercury poisoning is real, i am doing iv chelation for that too but your symptoms are really the one of lyme. I have a lot of mercury, but my symptoms, similar as you, are really lyme, but ,mercury and other heavy metals doesn't help.that is why i do chelation.Did you take out without precaution some mercury fillings some time ago??About candida, don't believe candida does all this too. When you have lyme , your candida level is very hight, with heavy metals too, but this is not a CAUSE"Consider lyme, you have the same symptoms than Michelle, i have too, and have lyme too...and co infections, important!You must test for all with a LLMD dr..I gave you the lymenet link for it...Good luck!Fannie
    Fannou 111 Replies Flag this Response
  • :confused:Hey guys, thanks again for the advice.. In response to someone wondering why I haven't been to the doc, I have.. To plenty of them. Another question was about what meds was I prescribed when I had pneumonia... Doxycycline.. HORRIBLE HORRIBLE drug.. never again will i take that.. They gave it to me cuz I am allergic to penicillium, (spelling?) erythromycin, and sulfa drugs.. But now for another concern.. Yesterday I ended up having to miss work (something I never really do) to go to the ER. My ears, head, and eyes were affected this time. My ears had that weird wave type ringing, and everything was amplified by a million.. I couldn't talk, hear good, see very well.. nothing..I had floaters, my eye kept twitching, I started trembling and had major chills. Although my temp was low. (Lately temp has been around 96.2! My ears kept popping, had alot of pressure , and at the base of my spine and neck there was this weird popping/creaking sound.. I was so so scared, it felt like something was bout to burst in my head.. the gave me a cat scan, and said everything was normal. Just a migraine. Although I have been on meds before for migrains and know very well what they feel like, this DID NOT resemble one AT ALL!! It was EXTREMELY scary!! But everyone keeps saying "you're fine" and I am beginning to think its all up in my head.I'm loosing sight and direction, and all the docs keep shrugging it all off!! I feel horrible guys! What could this have been? Why is my body feeling like it is shutting down and the tests show NOTHING? :( I'm so sick and tired of being sick and tired.. I'm so greatful for you guys.. thank u for all your warm wishes and support! I appreciate all of this!!:( One more thing.. they gave me a shot of something(was pretty out of it, cant remember exactly) and almost instantly there was this major pain in my shoulders and back of head.. It became excruciating. I started to panic, and left. Why did it hurt so bad when it was supposed to do the opposite? No relief what so ever.. yet, it's a migraine??????!!!!!
    makahfili 8 Replies Flag this Response
  • :mad::(Ok...... freakin out.. same thing with my head last night.. happening right now... GRRR>l....What is going on??????????????????????????
    makahfili 8 Replies Flag this Response
  • Hello, I couldn't help but wonder if you have figured out what is happening to you. These posts are more than a year old. I was going to suggest that you be tested for Cushings. Your cortizol levels need to be tested to find out for sure. Be careful, the 24hr swab test has a tendency to come out false negative, so have it repeated several times.I hope you have found relief. SymptomsBy Mayo Clinic staff CLICK TO ENLARGE Cushing's syndrome Common Cushing's syndrome symptoms include: Weight gain, particularly around your midsection and upper back Fatigue Muscle weakness Rounding of your face (moon face) Facial flushing Fatty pad or hump between your shoulders (buffalo hump) Pink or purple stretch marks (striae) on the skin of your abdomen, thighs, breasts and arms Thin and fragile skin that bruises easily Slow healing of cuts, insect bites and infections Depression, anxiety and irritability Loss of emotional control Thicker or more visible body and facial hair (hirsutism) Acne Irregular or absent menstrual periods in females Decreased libido Erectile dysfunction in males New or worsened high blood pressure Glucose intolerance that may lead to diabetes Headache Bone loss, leading to fractures over time When to see a doctor If you're taking corticosteroid medications to treat a condition, such as asthma, arthritis or inflammatory bowel disease, and experience signs and symptoms that may indicate Cushing's syndrome, see your doctor for an evaluation. Even if you're not using these drugs and you have symptoms that suggest the possible presence of Cushing's syndrome, contact your doctor. I wish you all the best.:mad::(Ok...... freakin out.. same thing with my head last night.. happening right now... GRRR>l....What is going on??????????????????????????
    Anonymous 42789 Replies
    • October 7, 2009
    • 10:13 PM
    • 0
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  • :confused:Hey guys, thanks again for the advice.. In response to someone wondering why I haven't been to the doc, I have.. To plenty of them. Another question was about what meds was I prescribed when I had pneumonia... Doxycycline.. HORRIBLE HORRIBLE drug.. never again will i take that.. They gave it to me cuz I am allergic to penicillium, (spelling?) erythromycin, and sulfa drugs.. But now for another concern.. Yesterday I ended up having to miss work (something I never really do) to go to the ER. My ears, head, and eyes were affected this time. My ears had that weird wave type ringing, and everything was amplified by a million.. I couldn't talk, hear good, see very well.. nothing..I had floaters, my eye kept twitching, I started trembling and had major chills. Although my temp was low. (Lately temp has been around 96.2! My ears kept popping, had alot of pressure , and at the base of my spine and neck there was this weird popping/creaking sound.. I was so so scared, it felt like something was bout to burst in my head.. the gave me a cat scan, and said everything was normal. Just a migraine. Although I have been on meds before for migrains and know very well what they feel like, this DID NOT resemble one AT ALL!! It was EXTREMELY scary!! But everyone keeps saying "you're fine" and I am beginning to think its all up in my head.I'm loosing sight and direction, and all the docs keep shrugging it all off!! I feel horrible guys! What could this have been? Why is my body feeling like it is shutting down and the tests show NOTHING? :( I'm so sick and tired of being sick and tired.. I'm so greatful for you guys.. thank u for all your warm wishes and support! I appreciate all of this!!:( One more thing.. they gave me a shot of something(was pretty out of it, cant remember exactly) and almost instantly there was this major pain in my shoulders and back of head.. It became excruciating. I started to panic, and left. Why did it hurt so bad when it was supposed to do the opposite? No relief what so ever.. yet, it's a migraine??????!!!!!WOW i totally know how you feel im going through all the same symtoms you are going through i begining to think that i my self is going crazy do to all the symtoms and pain i feel over my whole body. i begining to think there is no hope or answers to what iam feeling beside i seen a special on the news last night about women young and old suffering from chronic pain and can't seem to find any answers for why they feel that way. then they found out that all the symtoms and pain they were going through was fibermyalgia it had to do with your nerve receptors that caused the pain. so im gonna ask to speak with a neurologist about it cause i can no longer deal with this pain. i hope you can find answers and a cure so maybe i can do the same but i totally understand your frustration cause im there with you!
    Anonymous 42789 Replies
    • November 18, 2010
    • 10:59 PM
    • 0
    Flag this Response
  • :confused:hey guys, thanks again for the advice.. In response to someone wondering why i haven't been to the doc, i have.. To plenty of them. Another question was about what meds was i prescribed when i had pneumonia... Doxycycline.. Horrible horrible drug.. Never again will i take that.. They gave it to me cuz i am allergic to penicillium, (spelling?) erythromycin, and sulfa drugs.. But now for another concern.. Yesterday i ended up having to miss work (something i never really do) to go to the er. My ears, head, and eyes were affected this time. My ears had that weird wave type ringing, and everything was amplified by a million.. I couldn't talk, hear good, see very well.. Nothing..i had floaters, my eye kept twitching, i started trembling and had major chills. Although my temp was low. (lately temp has been around 96.2! My ears kept popping, had alot of pressure , and at the base of my spine and neck there was this weird popping/creaking sound.. I was so so scared, it felt like something was bout to burst in my head.. The gave me a cat scan, and said everything was normal. Just a migraine. Although i have been on meds before for migrains and know very well what they feel like, this did not resemble one at all!! It was extremely scary!! But everyone keeps saying "you're fine" and i am beginning to think its all up in my head.i'm loosing sight and direction, and all the docs keep shrugging it all off!! I feel horrible guys! What could this have been? Why is my body feeling like it is shutting down and the tests show nothing? :( i'm so sick and tired of being sick and tired.. I'm so greatful for you guys.. Thank u for all your warm wishes and support! I appreciate all of this!!:( one more thing.. They gave me a shot of something(was pretty out of it, cant remember exactly) and almost instantly there was this major pain in my shoulders and back of head.. It became excruciating. I started to panic, and left. Why did it hurt so bad when it was supposed to do the opposite? No relief what so ever.. Yet, it's a migraine??????!!!!! hello, i have full body pain & a ton of other issues too, sounds like fibromyalgia, can settle in after a virus that won't go away.
    JanStar 7 Replies
    • November 25, 2010
    • 04:29 PM
    • 0
    Flag this Response
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