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It's Cost Me My Job, Insurance, Part Of My Sanity, And Still Undiagnosed

lf325
0 Recommendations

I have had a chronic condition for over a year and am still undiagnosed.

My symptoms include fatigue, nausea, occasional vomiting, headaches, changes in bowel, reoccurring flu, and a constant thirst.

I have had many tests including various blood and stool tests. I have also had endoscopies, x-rays, CT scans, and a recent colonoscopy. All they have turned up is inflammation and malabsorption (negative for Celiac/gluten sensitivity)>

If anyone has a similar condition or can suggest any tests I should have, I would be very grateful as this condition has drained far more than my pocketbook.

Explore topics in this discussion:

Cancer Irritable bowel syndrome Chronic pain Acid reflux Prevacid Gastroparesis Anxiety Sjogren's syndrome Bronchitis Mastocytosis Reglan Dizziness Asthma Panic disorder Ibuprofen Diabetes Fever Anemia Pain Memory Rare diseases Dystonia Depression

32 replies

demosthenes

Hello, I have suffered for many years longer than you ,before I got a diagnosis,even with the diagnosis,my doctors are having a hell of a time trying to figure out the root cause of my problem.I first felt unwell many years ago, weakness,fatigue,weight loss,bowel symptoms,no nausea,all tests were normal,nearly 16 years later my doctor ran a series of blood tests I had never had before,in one of these blood tests it was discovered I had secondary hyperparathyroidism,as a result of a malabsorption syndrome,this was later confirmed by a 72 hour fecal fat test,although mmalabsorption was always suspectedit took many years to confirm.I have had many ,nany tests, unneeded surgeries, it took this lomg to confirm a malabsorption syndrome,I have tested negative for celiac,no parasites found in stool tests,gall bladder was removed.You should tell your doctor to run different tests like pth(parathyroid hormone levels,calcium,vitamin d,regards

lf325

Do you have diabetes insipidus? Are there other symptoms besides excessive thirst? The only tests I have had that might point to that but didn't are blood glucose and calcium levels, which were fine.

wantacure

Have you been tested for diabetes insipidus? Not diabetes melitus, (that's what most people have) Diabetes insipidus makes you extremely thirsty.

destiny07

if325,
years ago (1990ish) i was having extremely similar ailments just like yours and finally when i was under 100 pounds and could no longer hold food or water down, they hospitized me. after being there for a week, a surgeon walked by numerous times and finally stuck his head in my door and then we chatted. he asked if i'd let him perform a laporoscopy, just to go in and look around and at that time, i was willing to do anything.

i did tell him before hand that if by chance he found something wrong to just remove it or to fix it and not to wait for another time. it turned out that my gallbladder was 85% diseased (which is something that happens with the elderly i was later informed) and this never showerd up on any untrasounds or other tests at all. he removed my gallbladder and i started eating and feeling better immediately. perhaps you could look into something like this even.

i hope they find some relief for you soon. lots of luck to you. keep your chin up, we all know how very hard that is.

cecbar

i've been ill for 12 years now.
i'm still alive, sometimes drs, don't know and don't know how to say they don't know, so they just put your crazy. they just don't want to spend the time to find out, money. some just are not that bright. also, some don't like anyone 50 and over.

if you have any family that talks about health get their history, grandparents etc..
women know their bodies very well. listen to yourself above all. oh, and when you find a doctor that listens to you and acts on what you say, you have found a buried treasure. hold on to that doctor.

i'm always thirsty, and i think it's all hormones. i got that way at 48. maybe chlorene in the water too.
7up mixed with water seems to help me. also, i've taken more antibiotics for thinning of the skin infections. that makes me thirsty.

i survived septic shock when the antibiotics quit working 9 years ago.

somethings just happen. we are all unique in one way or another.

i have generalized dystonia. also, they finally found and removed a large ovarian tumor last year. tg.
it was not cancer as they thought it would be.

i still get those infections from thinning of the skin.
and my doctor really doesn't know why mine is so thin,
but my aunts all had auto immune diseases.

seems like everything almost is genetic with me.

lf325

Sorry I haven't posted in a while. I forget that when I share online, I also have to share results.

Went to a rheumatologist and had a few things ruled out, including Sjorgens. The doc didn't see the need to test for anything else, so back to the yellow pages for me. I found a specialist that does fatigue diseases and hopefully she'll be able to help me.

Fingers crossed and thanks for everyone's help!

cattoy

Sjogren's is a very good call. Also, have you been tested for Diabetes? I know it sounds simple but just checking. Thirst is a common sign of diabetes.

Please update us on how you're doing.

lf325

Thanks, heppy.

I didn't think getting disability would be hard, since so many people I know get it for "back problems," but it actually is apparently if you actually need it.

I was just turned down for the second or third time and I'm supposed to go in front of a judge whenever they feel like setting a date, so wish me luck, but I don't see it happening.

heppy

can you get disability...?

heppy

heppy

I have usually a low grade fevor, (I got bit on my ass-really!) in Hawaii in 1976, and came back with the room spinning around, back - leg pains, and just plain miserable, got mono in 1996, and never recovered from the side effect- chronic fatigue, and fibromalagia, feel horrible today, my immune system is lousy, stay home so much...I did find out that I have a thyroid problem (hypo), but that didn't cure anything.....now, I have crohns disease, and diverculis (spelled wrong), yet on the positive side, I can walk, can still socialize, and I just rest when I am so tired....

It is hard to get a dianosis, since most of the idiot drs think it is all in your head....I will admit the depression of these illnesses are of course making you sad, but don't listen to the drs..(the bad ones)

love, heppy

lf325

There certainly have been times when I was unhappy with my situation and I would definitely understand someone in a similar condition finding relief with an anti-depressant, but it's not for me.

To me, it's like going to the ER with a fever and they offer you an ice cube. I get far more pleasure tossing that cube back at them than any pill could ever give...

SickOfBeingSick

I second what Ellen said. Been down that road many times with doctors until I got my CVID diagnosis.

Cathy

caringcounterparts

Interesting. I was diagnosed with depression, panic disorder, agoraphobia, generalized anxiety disorder, and chronic pain syndrome during the 20 years I sought a diagnosis before I diagnosed my own brain tumor. Funny - all those symptoms went away once it came out... and if I hadn't diagnosed myself when I did, it would have become inoperable.

Although I'm not a health care professional, I've never heard of depression causing excessive thirst that when ignored causes dizziness, fatigue and nausea. Nor have I heard of depression causing recurring flu symptoms.

It's entirely plausible (and understandable) that you would be depressed when you've gone undiagnosed for a year. Antidepressant medication may be a legitimate form of treatment for you. But for a doctor to attribute all of a patient's symptoms to an emotional disorder without excluding other physical disorders first through diagnostic tests, imaging and referrals to specialists, in my opinion, is irresponsible and a great disservice.

Ellen
www.bulletpointblog.com

lf325

No problem.

I actually had an appointment with a regular doc yesterday. She actually said, "I haven't even known you for five minutes, but it sounds like depression to me. How bout an anti-depressant?"

I know some people can project physical symptoms because of mental anguish, but I'm willing to bet my own life that this isn't one of those times. Why are docs so willing to bet my life that it is???

Ok. Frustration over.

caringcounterparts

Let me know how it goes!

lf325

Thanks, Ellen.

Made appointment with rheumotologist today.

caringcounterparts

Hi If325...

It sounds like the pain from your headaches might be causing your nausea, unless you experience nausea without headaches.

I also have excessive thirst, where my body craves water, and if I go a couple hours without it I'll start feeling ill as you described. I drink 3 gallons of water a day. I have Sjogren's Syndrome, where moisture membranes throughout the body are attacked by the body's immune system (for many people, just their eyes and mouth). Also, from what I've read, some endocrinological conditions can cause excess thirst.

Hope this info helps narrow down possibilities...

Ellen
www.bulletpointblog.com

lf325

I did get the parvo test done and was tested for Crohn's and other IBS.

Prevacid helped with the inflammation and other medications such as Reglan and Dicyclomine haven't. I'm still pretty good with names and things I should know.

Flu symptoms come and go and are light on the good days -sniffling, congestion- and are full out flu and fever on the bad ones and last for weeks instead of days. Thanks for your help with this.

artmom

Do you have the actual flue, or flue-like symptoms (all over body aches and fatigue)? Do you know if the ID doctor ran the parvo test? If not, you could have him run a PCR parvovirus B19 test. It tells you if the virus is still active in your blood.
I had the colonoscopy, endoscopy and tons of antibiotics as a result of major g.i. issues. All that came up was severe inflammation. Chronic parvo hits people in different ways. The main similarity is the chronic flue-like symptoms.
As far as the brain fog- since you been sick have you noticed any changes in your memory? Like forgetting names and little things you normally would know.
I also have the constant thirst as well as a sore throat. I drink Smart Water because it has the electrolytes in it, and it seems to help.
Did the digestive doctors give you anything that worked? I lost 15 lbs. with my G.I. issues. I don't know what finally made it get better. Now I use Zofran for the nausea and Lomotil . But I now I have to use those meds only occasionally. Did they test you for Chrohn's?

lf325

I've been to an infectious disease specialist who ran a bunch of tests and turned up nothing.

I do get the flu more now, but not all the time, it may be worth looking into though.

As for brain fog, I can't really say for sure, how bad would it have to be to qualify as a fog?

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