Discussions By Condition: I cannot get a diagnosis.

Help! 10 mos. of misery-no diagnosis! scared -29 yr old mom

Posted In: I cannot get a diagnosis. 30 Replies
  • Posted By: nsilk29
  • September 8, 2008
  • 04:19 AM

Hi, I am 29 yrs old and am desperate for help. Whatever is wrong with me is real(Drs. always look baffled or at me like I have 3 heads) and it is taking over my life-between the financial burden of all the dr. visits, time, the fatigue and pain, all affects what I can do , my life w/ my 3 children and husband. I have been given the runaround for really 2 yrs now and my symptoms are getting worse to the point I am frightened for my life .
I dont know if this is one Big problem or if somehow 20 things went wrong coincidently all at once

from 11-06 til current I get sudden severe pain in abdomen and have to run to bathroom(#2)
not to be gross stool mostly looks muddy or well..like peanut butter or liquid that comes and goes-had colonoscopies-nothing but never checked sm intestine(1 doc said maybe crohns in sm intest.?)

since this, out of nowhere past november(07) i STARTED with breathing problems
sometimes my heart would race and id get clammy but nonetheless I would have diff. inhaling deeply. it feels like I cant get ENOUGH air in my lungs or like im suffocating-also sharp pains thru back in ling area only when inhaling( has woken me out of sleep too) Pulmonary dr. treated me for COPD/asthma(that was my only sy,ptom at the time) but no help- then as new symptoms arose he felt it was a central nervous system disorder or autoimmune disease MS, SLE(other drs havent figured out yet)that was affecting my lungs and since this lung thing is a relapse type thing too.

Then in Feb.08 as this took a break I had diff. swallowing, GI found fungus in esophagus(assumed it was from advair id taken)and since have enlarged lymph nodes thru soft tissues of neck and submandibular area still there.-lumpiness inside cheek(not a sore but in lining of lip and cheek) red spots on ssoft palate in mouth and glottis-
High EBV levels 3200!
severe fatigue on /off-fine one min. then gonna drop the next
nausea for 5 mos straight-treated me w/ reglan and zofran didnt help
severe pains in neck and throbbing feeling constant- also shoots into head-sometimes feels like electricity-see chiropractor-doesnt help
have trigger points all thru neck and shoulder area down middle back
some headaches last a week at a time
sometime hurts in several spots just to touch head-tender
vision disturbances occasionally-double or floaters
on/off achy muscles
on/off joint pain and bones hurt--no swelling though
sever tiredness /no energy
wake up with stiff ankles every morning almost
almost constant pain in abdomen-tender to touch
painful intercourse
sudden pains in kidney area often(radiates thru back)
Ive had alot of UTIs and a few bladder/kidney infections(though some I wasnt aware of-Gyno told me from urine sample)
I get red bumps on scalp that hurt
I have flat white patches on arm for a long time sometimes itches-doesnt tan
Had 3 beauty marks surg. removed in 4 months-severe dysplastic nevus(last stage before melanoma)

FYI-Family history of many cancers
Had molar pregnancy 3 1/2 yrs ago
had precancerous cells on cervix
have high risk #'s of HPV(not wart type)

Ive had cts and MRI's done -not much found-
1 spot on brain found(suggest MS) new MRI showed nothing????
nothing in bloodwork-no ANA's for lupus
chest xray nothing found but that was done 1st time had symptom-could itve been too soon to detect prob?
recent ct of abdomen showed fluid (that wasnt there 2 mos ago) in pelvic area and fallopian tube--was in horrible pn went to ER other day

Ive had persistent hoarseness of throat/voice changed,my mouth always has burning /tingly sensation(tongus,roof, throat)
Ive been on antibiotics-so cant be infection
pain and pressure in ears comes/goes ENT saw nothing
Throat hurts and feels like its swollen inside /like someones squeezing my neck-noone sees anything
Chronic phlegm in throat and post nasal drip-years! no meds help-Ive tried OTC, RX meds, allergy meds, asthma meds, reflux meds???????
My biggest fear is with my mouth could it be oral/throat cancer since pain in ears, throat, neck persist now burning mouth, abnormalities in mouth including gums slightly discolored to lt purplish, pain thru jaw and so many risk factors-smoked 15 yrs, Epstein barr, HPV fam hist???????
My lungs.....-I feel like im going to suffocate . it hurts and feels tight with pns thru back and in chest to expand them-------is it sarcoids, central nervous, autoimmune??????????I dont know what taken my whole body but I have a 12, 5 and 2 yr old and I cant function most days cause Im in pain or wesk and exhausted!
Im frustrated beyond understanding because 1-Ive been to an ENT, GI, rheumatologist, gyno, pulmonary dr, hematologist , noone knows although noone examines me they just look at me and say i dont know or your too young to have anything serious! please help!!!

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30 Replies:

  • sorry to hear that you are having such a difficult time.. some of the things you've said have pointed to that it may be "chronic fatigue syndrome". "High EBV levels 3200!" For many with CFS (a subgroup of it).. there is a link between EBV and CFS in some one gets a bad bout of EBV which then develops into CFS, in others the EBV can be reactivating in CFS. So with the high EBV and the CFS symptoms.. i think CFS could be likely your issue. CFS is much more common too in females (75% of people with this illness are female). "from 11-06 til current I get sudden severe pain in abdomen and have to run to bathroom(#2)" CFS for many first starts out as a boat of like a gastro type of virus... and from there.. go on to develop other symptoms. it feels like I cant get ENOUGH air in my lungs or like im suffocating- I call that "air hunger".. cant get enough air.. it's aweful. I've had that symptom on occassions where ive really "crashed"/relapsed more with the CFS i have. The christmas before last.. I had the problem so bad that it was scary and I was going to go to hospital as I felt like I needed to be put on oxygen (only thing which stopped me from doing so was it was christmas day and I didnt wish to worry my family). "Shortness of breath: 30-70% " of CFS patients (also called CFIDS.. chronic fatigue immunity dysfunction syndrome) have an issue of this kind going. check out http://wwcoco.com/cfids/bernesx.html as it has the CFS symptoms which one can get with this illness and the rate of them in CFS based on proper studies done. then as new symptoms arose he felt it was a central nervous system disorder or autoimmune disease MS, SLE(other drs havent figured out yet)that was affecting my lungs and since this lung thing is a relapse type thing too. CFS symptoms relapse..thou some may be there constantly but they usually are coming and going to different degrees. CFS is a kind of central nervous system disorder (among other things).. but unfortunately 95% of doctors are not up with the current CFS research and dont have a clue about it. The Centre of disease control in America says it's studies have shown that 90% of patients with this illness remain undiagnosed (due to doctors not being familiar or up to date with this illness!!!). have trigger points all thru neck and shoulder area down middle back The above and other things you've said.. have indicated that you probably have fibromyalgia. Fibromyaliga and CFS are over lapping illness. 25% of FM patients get CFS and more with CFS have fibro. I could go on and on about your symptoms but wont. I suggest you check out the link i gave ...and start seeking out a doctor who specialises in CFS.. who will either diagnose you with CFS or rule it out by finding another illness which is similar to CFS. www.immunesupport.com is the biggest online CFS support site and could be very helpful to you.
    taniaaust1 2267 Replies
    • September 8, 2008
    • 06:14 AM
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  • Hi, Even tho my symtoms are not the same as yours, I can relate to your problem. I have been sick for a few years now and no doctor has been able to tell me whats wrong. I have many of the same general symptoms that you have such as fatigue, bowel problems, joint pain without swelling, musclepain/fatigue, lumps inside the cheek, upper and lower lip and so on... I don't have any answers for you, but on my journey I have done alot of reading and the first things that hit me when reading your post was sarcoidosis and wegners. Both are autoimmune and can take 10+ years do diagnose. You also describe white patches that might be fungus, but it can also be caused by an autoimmune disease called vitiligo. Another thing I want to mention is that you should have your thyroid checked and if you already did (most likely) then you need to get your results and post them on a thyroid board and read up on the subject. You need to have your TSH, Free T4, Free T3 and antibodies done. Many doctors will tell you that your results are OK, when in fact they are causing symptoms. Thyroid disease with or without antibodies is common with many diseases. As for your EBV levels I wouldn't even give them a second thought. They mean nothing other then you had it at one time. BUT... many doctors do think that it can be a release factor for some diseases such as CFS. As far as the crohns goes, I would keep an eye on that. I have been through all the same tests and in my case they did find ulcers in my colon during my first colonscopy, but my second was clear. I still have all the same symptoms tho. The muddy bowel movements, foul smelling at times as well. Some days I go 3 times while other days I run back and forth 10 - 15 times a day. I know 2 people with crohns and both had it since their teens, but none of them were diagnosed until they were in their late twenties! The most important thing is to try not to give up. Keep searching and don't ever accept and IBS or CFS diagnose until all other options have been explored and you feel that the diagnose is correct! Hope you find som answers soon! Kiera
    Anonymous 42789 Replies
    • September 8, 2008
    • 06:57 AM
    • 0
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  • Have the doctor biopsy for sarcoid.
    aquila 1263 Replies
    • September 8, 2008
    • 04:09 PM
    • 0
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  • Hey guys s! Thanks for your response and concern. I feel like im alone in this because everyone seems to think because my dr.s, who I dont feel are thorough and blow me off, dont know that means its nothing! Thats why there's malpractice ins.-dr.s make mistakes and some people do go years before knwing( there's a whole show about it-mystery diagnosis) But Im glad I found this site and people that can relate or help/guide me. update-went to ENT today- again-says its nothing based on nothing -said i have some thickening of vocal chords-no explanation to that but nothing else visible but redness. said maybe stress ! Im in pain or discomfort everyday! not an ache here and there like uh-oh somethings not right feeling-I dont act, look, or feel like myself - its been 2 yrs since 1st symptom? I dont get it. Im goin gto try to push for a test for sarcoid cause coincidently that sounds exactly like what I feel -Lupus and MS very similar but those are vague also. Also-forgot to tell you i did go thru a period 5 years ago right after having my son of undiagnosed--severe joint and bone pain for 9 straight months! would just lay down and cry cause it hurt so bad to walk, hold a steering wheel even hold a jar of baby food. then it went away . dont know if that was related? What do you guys think about whether this being 1 big problem or what are odds of 20 different things going haywire at once?(well w/in 10 mos)
    nsilk29 3 Replies
    • September 10, 2008
    • 05:59 AM
    • 0
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  • Also-forgot to tell you i did go thru a period 5 years ago right after having my son of undiagnosed--severe joint and bone pain for 9 straight months! would just lay down and cry cause it hurt so bad to walk, hold a steering wheel even hold a jar of baby food. then it went away . dont know if that was related? What do you guys think about whether this being 1 big problem or what are odds of 20 different things going haywire at once?(well w/in 10 mos) the bone pain issue could be related. I know the stress of giving birth can trigger many things.. including a bout of CFS. Bone pain can also be a symptom of it. In the beginning of my illness with CFS (for me that was when i was at my worst)... I had horrific bone pain (along with joint and muscle pains).. all over pain!! As the other said thou.. you need to a doctor to listen to you and rule out all other possible explainations first thou..................... A common cause of bone pain (and many other symptoms eg tiredness, muscle aches etc) can be vitamin D deficiency. I strongly suggest to get your D3 (active D levels) or D2 and D3 levels tested. (unfortunately many doctors still arent up to date with the knowledge on vitamin D deficiency). You really need your D levels tested and if not right.. take supplements for this till they get within good levels to see if that helps your symptoms. "In a cross-sectional study of 150 patients referred to a clinic in Minnesota for the evaluation of persistent, muscle and bone pain, 93% had vitamin D deficiency!" http://www.algaecal.com/vitamin-d.html note: D deficiency can be also yet another symptom of CFS (but of cause D deficiency very commonly occurs alone). In my case it's another symptom of the CFS (as my body cant convert D2 to D3 so sunlight is not much help for my D levels).
    taniaaust1 2267 Replies
    • September 10, 2008
    • 09:00 AM
    • 0
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  • Hello-again and thanks for all your responses and concern- just another update-I wen to the Ent today-he said yes my throat is really red and voice box enlarged but nothing else-thinks poss. gerd-well I dont doubt its a possibility for some of my symptoms and I do wake up with a burning throat but what about everything else? I have this small hard lump for weeks in the middle of my lower lip(outer lip ) been there for a couple of weeks. Its not an ulcer or sore type thing just a bump inside the lip . its sore, tender kinda like if you ever ate alot of salty chips and your lips burn and feel shriveled up...... now same right above on top lip???whats this now and what about other pains. he checked everything in ears-even hearing and pressure. When I mentioned maybe doing a biopsy on my mouth or throat he looked at me funy and blew it off! What do I do ? I cant find anyone to give me peace of mind that its not a throat/oral cancer. Its hard to ignore once one dr. puts it in your head and noone can figure it out but all my symptoms as far as mouth/throat goes are exact to oral/throat cancer from the unexplained pains in mouth, throat, ears, jaw, chronic sinus probs. even recent severe dysplastic moles, ebv, poor diet, HPV(high risk #s not wart) smoked 15 years and fam history of cancers? I dont have sores but weird bumps random in mouth and enlsrged salivary glands. am I overworrying or does it seem like a possibility?It seems dr.s wanna wait til something is OBVIOUS.wouldnt something be pretty sdvanced once its obvious? I ve had enlarged lymph nodes in the submandibular area under jaw, in neck and a biosy of one that popped out of behind my ear......which all suggest prob in head/neck area..it came back that node was reactive to "something"???????cant there be a false neg sometimes and also god forbid but cancer etc.. not be in all nodes? Please advise on what to do and if im the only one that feels cancer is a possibility. Thanks guys!
    nsilk29 3 Replies
    • September 13, 2008
    • 04:49 AM
    • 0
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  • Hi, I am 29 yrs old and am desperate for help. Whatever is wrong with me is real(Drs. always look baffled or at me like I have 3 heads) and it is taking over my life-between the financial burden of all the dr. visits, time, the fatigue and pain, all affects what I can do , my life w/ my 3 children and husband. I have been given the runaround for really 2 yrs now and my symptoms are getting worse to the point I am frightened for my life . I dont know if this is one Big problem or if somehow 20 things went wrong coincidently all at once from 11-06 til current I get sudden severe pain in abdomen and have to run to bathroom(#2)not to be gross stool mostly looks muddy or well..like peanut butter or liquid that comes and goes-had colonoscopies-nothing but never checked sm intestine(1 doc said maybe crohns in sm intest.?) since this, out of nowhere past november(07) i STARTED with breathing problemssometimes my heart would race and id get clammy but nonetheless I would have diff. inhaling deeply. it feels like I cant get ENOUGH air in my lungs or like im suffocating-also sharp pains thru back in ling area only when inhaling( has woken me out of sleep too) Pulmonary dr. treated me for COPD/asthma(that was my only sy,ptom at the time) but no help- then as new symptoms arose he felt it was a central nervous system disorder or autoimmune disease MS, SLE(other drs havent figured out yet)that was affecting my lungs and since this lung thing is a relapse type thing too. Then in Feb.08 as this took a break I had diff. swallowing, GI found fungus in esophagus(assumed it was from advair id taken)and since have enlarged lymph nodes thru soft tissues of neck and submandibular area still there.-lumpiness inside cheek(not a sore but in lining of lip and cheek) red spots on ssoft palate in mouth and glottis-High EBV levels 3200!severe fatigue on /off-fine one min. then gonna drop the nextnausea for 5 mos straight-treated me w/ reglan and zofran didnt helpsevere pains in neck and throbbing feeling constant- also shoots into head-sometimes feels like electricity-see chiropractor-doesnt helphave trigger points all thru neck and shoulder area down middle backsome headaches last a week at a timesometime hurts in several spots just to touch head-tendervision disturbances occasionally-double or floaterson/off achy muscleson/off joint pain and bones hurt--no swelling thoughsever tiredness /no energywake up with stiff ankles every morning almostalmost constant pain in abdomen-tender to touchpainful intercoursesudden pains in kidney area often(radiates thru back)Ive had alot of UTIs and a few bladder/kidney infections(though some I wasnt aware of-Gyno told me from urine sample)I get red bumps on scalp that hurtI have flat white patches on arm for a long time sometimes itches-doesnt tanHad 3 beauty marks surg. removed in 4 months-severe dysplastic nevus(last stage before melanoma) FYI-Family history of many cancers Had molar pregnancy 3 1/2 yrs agohad precancerous cells on cervixhave high risk #'s of HPV(not wart type) Ive had cts and MRI's done -not much found-1 spot on brain found(suggest MS) new MRI showed nothing????nothing in bloodwork-no ANA's for lupuschest xray nothing found but that was done 1st time had symptom-could itve been too soon to detect prob?recent ct of abdomen showed fluid (that wasnt there 2 mos ago) in pelvic area and fallopian tube--was in horrible pn went to ER other day Ive had persistent hoarseness of throat/voice changed,my mouth always has burning /tingly sensation(tongus,roof, throat)Ive been on antibiotics-so cant be infectionpain and pressure in ears comes/goes ENT saw nothingThroat hurts and feels like its swollen inside /like someones squeezing my neck-noone sees anythingChronic phlegm in throat and post nasal drip-years! no meds help-Ive tried OTC, RX meds, allergy meds, asthma meds, reflux meds???????My biggest fear is with my mouth could it be oral/throat cancer since pain in ears, throat, neck persist now burning mouth, abnormalities in mouth including gums slightly discolored to lt purplish, pain thru jaw and so many risk factors-smoked 15 yrs, Epstein barr, HPV fam hist???????My lungs.....-I feel like im going to suffocate . it hurts and feels tight with pns thru back and in chest to expand them-------is it sarcoids, central nervous, autoimmune??????????I dont know what taken my whole body but I have a 12, 5 and 2 yr old and I cant function most days cause Im in pain or wesk and exhausted!Im frustrated beyond understanding because 1-Ive been to an ENT, GI, rheumatologist, gyno, pulmonary dr, hematologist , noone knows although noone examines me they just look at me and say i dont know or your too young to have anything serious! please help!!!Hi, I hope you feel well soon.Im not an expert but I have a feeling you dont have enough proper pro biotics in your stomach and intestines and you also may have a thing called 'Candidiasis'. It is a type of yeast infection that invades your whole body and messes up pretty much all of your systems. If your regular doctors can not figure out what's going on with you then I suggest that you go to a Naturopathic Doctors and tell him all of your symptoms. I like naturopathic doctors because they will actually let you sit there for an hour or so and allow you to tell them everything you are concerned about without thinking there's something wrong with you. Normal doctors dont study about these sorts of things so they wont be able to help you in this particular field of study. Anyway, even if I am wrong, at least you may be heading in the right direction into finding out what is actually the problem and being able to solve it....ok, God bless and take care!ps. I know it sounds crazy but Ive heard when people get a really bad case of Candidiasis then they can have all sorts of really bizarre symptoms.
    Anonymous 42789 Replies
    • September 14, 2008
    • 10:14 AM
    • 0
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  • I also believe you should go the natural route. Sounds like doing a detox would do wonders for you. It's a start anyway, and it couldn't hurt. A good website in drnatura.com. When you see all that you're going to just be so surprised. I use the detox myself every day. I wish I had found them 20 years ago. Go to the library or online and google natural cures, you'll find a ton of information.
    Anonymous 42789 Replies
    • October 8, 2008
    • 10:22 PM
    • 0
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  • I am sorry you are having such a tough time. It's hard to reply to such a long list of symptoms and still sound reasonable. But in saying that, I would bet that you have an excellent chance of having Lyme Disease and probably other tick borne (co-infections). High viral loads often come along with Lyme, because we can't clear them. Also, yes, you probably have CFS and FMS, but why? They are caused by something, but most people don't go any farther because doctors gave them a diagnosis, so they stop there. Truly, we do not know why people get Chronic Fatigue and Fibromyalgia, etc. But most people with Lyme Disease which IS treatable, have CFS and FMS. So I would offer this: Get yourself tested by either a LLMD Lyme Literate Medical Doctor who would also treat all those other issues, or see if your doctor or another doctor will test with Igenex Lab. You need a specialty lab. You have already experienced many lab tests without helpful answers. I would strongly suggest looking into Lyme and studying some Lyme sites in order to become familiar with why Lyme is a tough illness to diagnosis right now. It took me 16 years of wrong diagnosis to finally figure this out. I had MOST of your symptoms. A LLMD will detox you and help with the other problems you are experiencing. Check out the science, and make up your own mind with the scientific data. And let us know how you are doing.
    Anonymous 42789 Replies
    • October 10, 2008
    • 04:37 AM
    • 0
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  • Sounds like an infectious etiology to me. Sounds like a GI infection.... Immune responses can create an absolute cascading ***l in the body.... Look at some of the material on CFS or FM or ME/CFS. Also take a look at badbugs.org and read some of the material there. I would also look at Dr. Titlebaum's books on CFS. Very similar to my situation (past situation).
    LINENUP 122 Replies
    • October 11, 2008
    • 11:12 AM
    • 0
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  • Hi All and LineupI have a question to pose to whomever has some ideas. What causes Chronic Fatigue? Or Fibromyalgia? They are "syndromes"... but they have come out of nowhere. Do we just think these just show up for the heck of it? There are really no answers if we stop with those diagnoses. Just food for thought.
    Anonymous 42789 Replies
    • October 12, 2008
    • 04:32 AM
    • 0
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  • Complications of Crohn’s Disease

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  • Hi Light:: Many autoimmune diseases including CFS/FM have infectious etiologies -- these can be viral, bacterial, parasitic, mycoplasma, or yeast/fungus. For instance rheumatoid arthritis has been linked to some mycoplasma or bacterial agents (though I don't think this has been adopted by traditional medicine) - I know of 2 people who had their RA disappear after anti biotic use. Another component of the CFS/FM is the biological route, for instance toxins (heavy metal/environmental) will accumulate and begin to disable the body's responses including immune. Glutathione production or lack thereof seems to be a commonality with the pathogen and environmental toxin link as glutathione is vital for both immune health and toxin release.
    LINENUP 122 Replies
    • October 12, 2008
    • 06:33 AM
    • 0
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  • My information agrees totally with what you wrote. I would add that Lyme Disease (bacterial infection) can lead to such illnesses ontop of Lyme or other tick borne. In my own case, I have Lyme, Babesia, off the charts mercury levels, FMS, CFS, and many viral infections caused by not being able to get healthy and clear them. I am on Glutathione (transdermal) and a lot of other treatments to round out my protocol for Lyme and the rest. My Lyme doctor is a blessing. He looks at ALL the things affecting me and treats with traditional medications/therapies, Eastern and Alternative therapies. I feel really blessed to have him. So I suppose my point was, there are reasons WHY we get Fibro and Chronic Fatigue, etc... and you seem to agree. I don't believe that FMS and CFS are the beginning of an illness, I believe they are symptoms of other diseaes. Thanks Lineup.
    Anonymous 42789 Replies
    • October 12, 2008
    • 07:44 AM
    • 0
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  • Your symptoms are telling you many areas of your body are extremely stressed. The longer you delay fixing the problem or cover the symptoms the body will bring out other symptoms. From experience I would suggest that proper supplements will assist your body in healing itself. It may take 2-3 months to bring you back to normal health although you most likely would see improvements within 2-3 weeks. Since my recommendations are based on individual discussions I cannot give specific supplements here. However, you can reach me on MSN Messanger on-line "Nutritionist7" or you can e-mail me at nutritionist7 @live.com.:)
    Nutritionist7 16 Replies
    • October 12, 2008
    • 10:45 PM
    • 0
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  • I understand how you feel. About two months ago I suddenly got ill. From that point on I've experienced throat, breathing, neck, jaw, heart, back, ear, kidney, digestive, arm, and leg problems, tension headaches, and uncontrollable muscle tremors/spasms. There are too many symptoms. Too many things going on. It has hurt everywhere in my body. I don't have health insurance. Been to six Doctors who have found nothing. Including the ER. They stopped taking me seriously and my symptoms (some of which would seem to be potentially life-threatening), are due to anxiety.An hour ago my belly button felt sore and I looked inside of it. There were cuts, abrasions, yellow crust, and yellow mucous oozing out of it. I know I am physically (not mentally) ill. At this point I'm FED UP with american health industry and figure (as awful as it sounds) if I die, there's nothing I could do about it. Or maybe I'll just move somwhere where they actually try their best to practice preventative healthcare. I don't mean to sound like a religious freak, but maybe it would be a good idea to put it in God's hands. Things like this happen so we can learn to rely on Him and not people, with our lives. I'm pretty confident that he loves us enough to help us out if we turn to him. And through painful experience, we learn how to help out other people too.
    Anonymous 42789 Replies Flag this Response
  • Wow, I could have written this post. I have 95% of the symptoms you have in your list below. I too get headaches, muscle/ joint aches, nausea, pains in my abdomen/ kidney/ lower back area, itching all over, extreme fatigue one minute and cleared up the next, gas/ bloating, high EBV, severe pains all throughout my neck, upper back, upper chest, breast area, lots of infections, tender spots throughout my body, sores in my mouth, sores on my head, white scaly patches on my inner arms, lymph nodes are extremely sore, moments of hot flashes and nausea, 'lumps' in my upper buttocks area. I really can't believe we have so many similar symptoms going on. I am also a 28 year old mom of 2. If you ever find out what this is, PLEASE let me know. I tested negative for Lupus, Sclereoderma, Sed rate normal, no Thyroid issues, no B12 issues, kidney/ liver function normal, CBC normal except for low platelets, Hepatitis, Lymes disease, clear MRI of brain and cervical spine. I feel like I am DYING though :( Hi, I am 29 yrs old and am desperate for help. Whatever is wrong with me is real(Drs. always look baffled or at me like I have 3 heads) and it is taking over my life-between the financial burden of all the dr. visits, time, the fatigue and pain, all affects what I can do , my life w/ my 3 children and husband. I have been given the runaround for really 2 yrs now and my symptoms are getting worse to the point I am frightened for my life .I dont know if this is one Big problem or if somehow 20 things went wrong coincidently all at once from 11-06 til current I get sudden severe pain in abdomen and have to run to bathroom(#2)not to be gross stool mostly looks muddy or well..like peanut butter or liquid that comes and goes-had colonoscopies-nothing but never checked sm intestine(1 doc said maybe crohns in sm intest.?) since this, out of nowhere past november(07) i STARTED with breathing problemssometimes my heart would race and id get clammy but nonetheless I would have diff. inhaling deeply. it feels like I cant get ENOUGH air in my lungs or like im suffocating-also sharp pains thru back in ling area only when inhaling( has woken me out of sleep too) Pulmonary dr. treated me for COPD/asthma(that was my only sy,ptom at the time) but no help- then as new symptoms arose he felt it was a central nervous system disorder or autoimmune disease MS, SLE(other drs havent figured out yet)that was affecting my lungs and since this lung thing is a relapse type thing too. Then in Feb.08 as this took a break I had diff. swallowing, GI found fungus in esophagus(assumed it was from advair id taken)and since have enlarged lymph nodes thru soft tissues of neck and submandibular area still there.-lumpiness inside cheek(not a sore but in lining of lip and cheek) red spots on ssoft palate in mouth and glottis-High EBV levels 3200!severe fatigue on /off-fine one min. then gonna drop the nextnausea for 5 mos straight-treated me w/ reglan and zofran didnt helpsevere pains in neck and throbbing feeling constant- also shoots into head-sometimes feels like electricity-see chiropractor-doesnt helphave trigger points all thru neck and shoulder area down middle backsome headaches last a week at a timesometime hurts in several spots just to touch head-tendervision disturbances occasionally-double or floaterson/off achy muscleson/off joint pain and bones hurt--no swelling thoughsever tiredness /no energywake up with stiff ankles every morning almostalmost constant pain in abdomen-tender to touchpainful intercoursesudden pains in kidney area often(radiates thru back)Ive had alot of UTIs and a few bladder/kidney infections(though some I wasnt aware of-Gyno told me from urine sample)I get red bumps on scalp that hurtI have flat white patches on arm for a long time sometimes itches-doesnt tanHad 3 beauty marks surg. removed in 4 months-severe dysplastic nevus(last stage before melanoma) FYI-Family history of many cancers Had molar pregnancy 3 1/2 yrs agohad precancerous cells on cervixhave high risk #'s of HPV(not wart type) Ive had cts and MRI's done -not much found-1 spot on brain found(suggest MS) new MRI showed nothing????nothing in bloodwork-no ANA's for lupuschest xray nothing found but that was done 1st time had symptom-could itve been too soon to detect prob?recent ct of abdomen showed fluid (that wasnt there 2 mos ago) in pelvic area and fallopian tube--was in horrible pn went to ER other day Ive had persistent hoarseness of throat/voice changed,my mouth always has burning /tingly sensation(tongus,roof, throat)Ive been on antibiotics-so cant be infectionpain and pressure in ears comes/goes ENT saw nothingThroat hurts and feels like its swollen inside /like someones squeezing my neck-noone sees anythingChronic phlegm in throat and post nasal drip-years! no meds help-Ive tried OTC, RX meds, allergy meds, asthma meds, reflux meds???????My biggest fear is with my mouth could it be oral/throat cancer since pain in ears, throat, neck persist now burning mouth, abnormalities in mouth including gums slightly discolored to lt purplish, pain thru jaw and so many risk factors-smoked 15 yrs, Epstein barr, HPV fam hist???????My lungs.....-I feel like im going to suffocate . it hurts and feels tight with pns thru back and in chest to expand them-------is it sarcoids, central nervous, autoimmune??????????I dont know what taken my whole body but I have a 12, 5 and 2 yr old and I cant function most days cause Im in pain or wesk and exhausted!Im frustrated beyond understanding because 1-Ive been to an ENT, GI, rheumatologist, gyno, pulmonary dr, hematologist , noone knows although noone examines me they just look at me and say i dont know or your too young to have anything serious! please help!!!
    rtaormino 4 Replies Flag this Response
  • It's highly unlikely that you have an oral cancer because they're really easy to see.As for your pain,are you on any meds,especially pain meds which you need.And,as for whether you have one thing wrong or 20,it depends on your age.If you're under 40,it's likely to be one thing;if over,it's likely to be a combination of things.Your small bowel needs to be tested for sure.
    richard wayne2b 1232 Replies Flag this Response
  • Oh,Isee that you're just 29;therefore,it's likely to be one(two at the most) thing causing your symptoms.How many of your symptoms do you you think are due to stress?
    richard wayne2b 1232 Replies Flag this Response
  • Just a quick suggestion with your stomach issues...I have had the same thing off and on for years. I am 25 now and I have had similair stomach problems since I was 16. I am baffled that my Gastro Dr. never suggested this to me, but I find that when I eliminate caffiene from my diet there is a major difference. When I have caffiene in my diet there are sometimes where I can't even sit through a meal without having to run to the bathroom.I am also a mother and I think alot of things play into these stomach issues...stress, heat, etc. But caffiene has played a huge role in my problems.Just thought I would share, hope that helps! And I hope you find some help through this website...it's hard being sick and even worse when you have little ones that depend on you!
    LT8605 20 Replies Flag this Response
  • I am sorry you have to suffer like this. It sounds like alot of the symptoms I have too. I was diagnosed eventually with CFIDS. I thought this can't be for real...These symptoms are so much worse. However, this disorder causes alot of non specific symptoms that just do not make sense. But they are very real. First of all, you suffer from IBS. Triggers include a hypersensitivity to adrenaline(the body's natural fight or flight mechanism). When you are exposed to a little bit of fear, your body reacts in overdrive. Your heart pounds, you sweat, you get a knot in your throat, vision is blurred or very sensitive to light, you feel dizzy, and your stomach feels like a big cramp that's moments away from exploding. Believe it or not, adrenaline causes alot of this. One more food for thought...yes literally...food. CFIDS sufferers are known to be sensitive to higher GI foods. Meaning they suffer from some form of reactive hypoglycemia. This is very different then the diabetic type of hypoglycemia. Next time, keep record of what you eat and write down when your triggers happen. Stay away from White flour, high sugar, and empty calories. Eat more whole grains (but as with any carb, watch the quantity) with leaner meats. Definitely stay away from the fried stuff and the spicy. These are triggers for IBS. Example: When you eat something, maybe processed sandwich meat, cheese on a white roll with chips, do you feel horrible 15-45 minutes later?If so, your blood sugar spikes then falls....triggering the adrenaline, which raises blood pressure, heart rate, anxiety, stomach issues, headaches etc. Finally, always try to keep a protein bar available. I eat those South beach high protein, lower carb bars or SOY Joy. They help keep me calm and relaxed. You may also want to take up yoga, which helps the body stretch and feel better. After yoga I feel less stress. We all know stress causes alot of strain on the adrenal glands. Again the adrenal glands control cortisol(stress hormone) and Adrenaline(mentioned before). Eventually your adrenals tire and can't keep up with your body's demands. CFID patients also suffer from adrenal fatigue. Good Luck ;)
    Carrlexzi 36 Replies Flag this Response
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