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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

djmtard

Have they ever checked your sodium? Normal levels are 137-147...D

lf325

They have. The last test showed 142. Vitamin D is sometimes low and albumin is sometimes high.

djmtard

Sorry to here of your troubles:( Keep the faith they will figure it out!!

masto4acure

The trouble w/ those symptoms is that they are rather non-specific, meaning they could be potentially be attributed to a wide range of diseases. BUT...since almost every one of them fits the bill for my diagnosis, I will share the name of it w/ you in hopes it can guide you in some kind of direction. It's called mastocytosis. I recommend you look it up, and hopefully you'll know just by reading about it whether or not that sounds like you. The number and degree of symptoms vary from person to person, so some people may have just a few that are only intermittent or quite mild, while others may have nearly every one on the list and be severely symptomatic all the time. Anyway, just wanted to throw you a rope...sounds like you're drowning, but don't lose hope. Best wishes!!!

illness

I too have had lots of problems in the past with fatigue, pains, asthma like problems, acid reflux, and irritable bowel syndrome and had to retire because I could not make it to work every day. After a blood test for my tryptase level--it showed I had a mast cell event--and should be evaluated for mastocytosis. I go on Monday to have a doc help diagnosis me. None of the doctors told me about the blood test showing this. I requested a copy of all my blood work and found this on my own. Thank god. Now I know why I get so sick. All my chest and lung tests came back normal and the rest of the blood work. So check out the site www.tmsforacure.org. This has alot of information and also show symptoms that are common with this disease. Good luck. It has taken me over 10 years to finally get a diagnosis.

lf325

Just zipped through my records and I haven't had that checked yet. Thanks for the heads up and words of encouragement.

foreverinbluejeans

This is a website for people with rare diseases. We can't diagnose and shouldn't even make suggestions to someone that doesn't have a diagnosis. We have enough problems of our own. I find it irritating when people with minor compared to ther problems many of us face that don't have a rare disease think they have a right to be on this website.

caringcounterparts

Forever in blue jeans - I don't know why you come to this forum, or what condition you know you have, but many people come here because they don't have a diagnosis. There are very few resources available for these folks, and they are fortunate to have this site.

From If325's post, you have no way of knowing whether the symptoms are life threatening. Clearly they are disabling. Do you consider symptoms that come from a rare disease to be more severe than symptoms that come from a more common, severe condition?

If you're feeling sorry for yourself, please don't take it out on others who taking action on their own behalf, seeking a better quality of life any way they can.

Ellen

caringcounterparts

Hi If325...

From the reading I've done, your symptoms sound like they could possibly be attributed to conditions related to the gallbladder.

Recurring flus and inflammation could be a result of immune-compromised conditions. You might consider seeing a rheumatologist and mention this. (A good rheumatologist often runs quite a few blood tests - if they don't, consider seeing someone else.)

What kind of headaches do you have? Muscle tension, migraine, etc. What works to make them better? What triggers them? How often do they occur?

Malabsorption is a good place to start researching. Do you know if there are specific things your colon is unable to absorb such as fats, sugars or proteins? Have you been tested for Vitamin K, B, and other vitamins and minerals to make sure you're not deficient?

Chronic thirst is another good place to research. Are you thirsty because your mouth is dry, or do you crave water? What happens if you don't drink water for a day? Have your thyroid hormones been tested?

Some medications can cause chronic thirst, malabsorption, headaches and digestive distress. You might want to ask your pharmacist to review your medications, or read through the information yourself.

Have you been tested for anemia? This can be caused by prolonged malabsorption, according to this list of conditions:

http://www.nlm.nih.gov/medlineplus/ency/article/000299.htm

Hope this helps...

Ellen
www.bulletpointblog.com

lf325

Thanks, Ellen.

I have had an abdominal ultrasound and my gallbladder looked fine, but if it looks fine, is it?

I was on the fence about seeing a rheumatologist, but am coming around.

Headaches usually come at night after activity and can come with nausea. Pain meds, mostly ibuprofen help. I get them an average of a couple times a month.

I just had a recent colonoscopy and the docs said I was fine in that area.

I'm thirsty because my throat and sometimes insides fell dry. Too scared to go a day without drinking, but if I am unable to drink, I can get fatigued, nauseous, dizzy...

I've been to an endocrinologist and he was one of the few docs I was actually happy with.

I didn't start taking meds until this happened, so I don't think that could be it.

Negative for anemia.

Thanks for all your help and I'll keep you updated.

SickOfBeingSick

Gastroparesis can cause malabsorption, flu-like symptoms, vitamin deficiencies and nausea, too. You might want to research it and see if it fits what you are experiencing.

At one point I had a gallbladder infection and I was told by a doctor and several individuals with past gallbladder problems that gallbladder problems don't always show up on the tests, unfortunately. Never heard anyone report lots of thirst, but since I'm not a doctor, I don't know if gallbladder problems could cause thirst.

Ellen gave a good suggestion about checking immune function - a rheumatologist can check for an over-active immune system, but an immunologist would probably be needed to check for an immune deficiency. Immune deficiency can cause GI problems but usually other symptoms are present like lots of sinus infections, bronchitis, swollen lymph glands, etc.

Hope you discover the cause of your problems soon so you can get some adequate treatment.

Been there, got the T-shirt as far as the lost job, lost insurance, lost sanity, not knowing what is wrong. Hang in there.

Cathy

artmom

I have similar symptoms and have chronic human parvovirus B19. Some people know it as fifth disease. It's a virus kids get and it goes away fairly quickly. Rarely adults get it-when they do it seems to hit especially women and it can take several years for it to go away. One of the main symptoms is flue-like symptoms that seem to cycle on and off. when I first got it -I thought it was the flue, but never got better. A lot of people have to cut their work load way down and some have to quit working altogether. Were you tested for human parvovirus B19? Since it's not too common in adults, they might not have. It took them 3 months for someone to finally diagnose me and that was only after my 5 year old showed symptoms. Thankfully, she only had it a couple of days. Do you have the brain fog too?

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?

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 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.

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

Thanks, Ellen.

Made appointment with rheumotologist today.

caringcounterparts

Let me know how it goes!

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

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

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