Chronic illness

[Mom-ninja.]

I suffer from an as yet unknown chronic illness. My Dr. is baffled by my symptoms, and we have just begun to run tests.

 

When I say baffled, I mean, that my symptoms are nausea, vomiting, diarrhea, and stomach pain and well, that doesn't exactly narrow it down as far as possible problems. Apparently, just about every problem has these symptoms.

 

Then throw in the weird timing. For the past year I've been getting sick, which lasts about 12 hours, every 9 weeks. My Dr. looked at me like this :001_huh: when I told her that.

 

Well, now another curve ball. I was sick 10 days ago and tonight I'm sick again. So, this time it was not 9 weeks between episodes. It was only 10 days.

 

The lab work I had done last week will take about 3 weeks for results. Sigh. 3 weeks.

 

Does anyone else here suffer from a chronic illness? How long did it take to figure out what was wrong?

 

I'm trying to stay away from google because I'll panic when I start to read about serious diseases.

 

I'm just ready to cry. I'm so tired of this.

[heartosunshine]

Maybe a new food allergy?

A couple years ago, I developed an allergy to corn that I never had before. I was having lots of intestinal issues at random times. It finally showed up on an allergy test. Now that I don't eat corn, I'm much better!

[AngieW in Texas]

I had a weird illness than went on for several months and had me and my doctor baffled. All my food was running right through me and I had awful stomach cramps.

 

After lots of testing, there was still no answer. I actually figured it out when I forgot to take my vitamins with me on vacation and got completely better. I was sick again 24 hours after starting my vitamins again.

 

I finally figured out that I was allergic to nutritional yeast.

[FrogMom5]

I don't have any ideas for you but :grouphug:. I hope your doctor finds out what is making you sick and fixes it soon.

Denise

[Jean in Newcastle]

I have had much better "luck" with naturopathic doctors for mysterious "not by the book" illnesses than with MDs. I like the kind of NDs that use a variety of diagnostic techniques including regular lab tests.

 

I might point out that I was treated last year for parasites. The doctor ended up treating me based on my symptoms. The problem with testing is that parasite tests can give false positives very easily because 1. parasites have life cycles and if you test at a wrong time in their life cycle you won't find them and 2. even if it is the right time of the life cycle you don't shed bits of parasites or eggs at every BM (tmi, I know). The treatment wasn't fun. I was on 2 prescription meds and 1 herbal preparation for 2 months. But the difference in my health afterward has been amazing!

 

I mentioned this because I had a hard time figuring out what was going on because my symptoms were intermittent too - based on the life cycle of the parasites.

 

Other reasons could be hormonal - some people have GI trouble at certain times in their menstrual cycle.

 

Or allergies - IF you only eat certain foods every couple of months.

[Twigs]

1st :grouphug::grouphug::grouphug:, being sick is just awful.

 

I really can't help you out, but it sounds so digestive-related.

 

Do you keep a journal?

I would log: Meals - when eaten, what & how much eaten, cooked at home, eaten at a resturant, cooked at someone else's house.

Any medication - prescriptions and OTC.

Maybe keep track of people - some chemicals (perfumes, soaps, lotions, etc) that other people use make me nauseous.

Maybe it could be a cleaning product used in your home only occasionally or some place you visit.

 

Hope you are able to figure it out.

Best wishes.

[Random]

:grouphug:

 

Don't stop looking for answers.

[Sushi's Mom]

Being sick for a log time is awful. I am sorry to hear you are having to go through it. I've not been feeling well for probably 14 years now, progressively getting worse. A few months ago a friend told me she thought I was dying. I've been to so many doctors that I cannot even remember all of their names! We are ruling out a lot of stuff, and I think we are getting closer to a diagnosis, but it has been tough at times. The worst thing, though, is when a doctor does all the tests, then announces there is nothing wrong with you, when you know there definitely is.

 

You have received a lot of good ideas here from the others. Definitely keep a log of your food, vitamins, etc. as was mentioned above. See if there is any kind of pattern. If you suspect something, don't eat it for a week. Record how you feel. Then eat it and see if you get a reaction. Do that with each thing you suspect.

 

Good luck to you! I hope you figure it out quickly and start to feel better soon.

[Mom-ninja.]

I have had much better "luck" with naturopathic doctors for mysterious "not by the book" illnesses than with MDs. I like the kind of NDs that use a variety of diagnostic techniques including regular lab tests.

 

I might point out that I was treated last year for parasites. The doctor ended up treating me based on my symptoms. The problem with testing is that parasite tests can give false positives very easily because 1. parasites have life cycles and if you test at a wrong time in their life cycle you won't find them and 2. even if it is the right time of the life cycle you don't shed bits of parasites or eggs at every BM (tmi, I know). The treatment wasn't fun. I was on 2 prescription meds and 1 herbal preparation for 2 months. But the difference in my health afterward has been amazing!

 

I mentioned this because I had a hard time figuring out what was going on because my symptoms were intermittent too - based on the life cycle of the parasites.

 

Other reasons could be hormonal - some people have GI trouble at certain times in their menstrual cycle.

 

Or allergies - IF you only eat certain foods every couple of months.

 

 

I see an MD who is very holistic minded. She's really into healing the gut and looking at food issues. She's the one who figured out my ds's stomach aches.

 

I've gotten sick at complete random times during my menstrual cycle. I also have only had 7 cycles since having my last dc, and I've been getting sick for longer than that.

 

As for allergies/food sensitivities, I can't think of any food that I only eat every now and then. Could a food allergy/sensitivity possibly build up until sickness occurs? As in I don't get sick every time I eat it but maybe just when too much is in my body?

 

Last week they did two blood tests and (TMI) stool samples for three days to check for parasites. No results yet. I did speak to a woman I know IRL who had similar symptoms, and her Dr. treated her based on symptoms for parasites. I'll bring that up when I talk to my Dr again.

 

Do I call my Dr. in the morning and ask for allergy testing? This is one of the tests that I completed last week and I'm waiting for results.

[Mom-ninja.]

Being sick for a log time is awful. I am sorry to hear you are having to go through it. I've not been feeling well for probably 14 years now' date=' progressively getting worse. A few months ago a friend told me she thought I was dying. I've been to so many doctors that I cannot even remember all of their names! We are ruling out a lot of stuff, and I think we are getting closer to a diagnosis, but it has been tough at times. The worst thing, though, is when a doctor does all the tests, then announces there is nothing wrong with you, when you know there definitely is.

 

[/quote']

 

14 years! I can't imagine being sick for so long and not knowing why. :grouphug:

 

 

My ds can't eat wheat. Perhaps I'll start there.

[Legomom]

If you take any medications, it might be a good idea to check into the side effects on those (doctors don't always know about these). I have had mystery symptoms and later determined that they were side effects. I have also known several people with serious symptoms who had been to a number of doctors before it was determined that they were experiencing side effects from medication. It can be prescriptions or OTC.

[Mom-ninja.]

The only medication I take is Zofran which is to treat my symptom of nausea and vomiting. It stops the vomiting but not the nausea which is why I can't sleep. I just sit here queasy and tired but not able to sleep.

[sewingmama]

Yes it is frustrating. Around the end of last year I started displaying all these serious symptoms akin to having something like a brain tumour or MS or something. Went through a battery of tests and saw many specialists but no one can work out what is wrong other then "it looks like some sort of auto-immune issue".

 

Most of my symptoms eventually cleared up but I still get a flare up every now and then. So my doctors are taking a wait and see approach. My next appointment is in September if nothing flares up before then.

 

Yes it is annoying when there is no diagnoses and yes it can take a really long time to be diagnosed correctly. The problem is there are only so many symptoms a body can display and the doctor just has to basically keep working on narrowing it down through a process of elimination and that can take ages. Especially if you have symptoms that come and go.

 

 

And I hear you on doctors that go :001_huh: The first doctor I saw diagnosed me as having a middle ear infection (although I had no signs) , the second said it was "stress related" (Everytime I mention I have three kids 5 and under the doctor always diagnose my symptoms as "stress-related:glare:) and then the third doctor just appeared baffled and referred me straight to a specialist :D

 

Hang in there :grouphug:

 

I do hope you feel better soon though - nausea (for me) is one of the worst symptoms to deal with :ack2:

[5KidzRUs]

I had an illness With same symptoms. They started after I fell ill and was diagnosed with Psittacosis.

Every few weeks I would get so sick I eventually would pass out from vomiting and once had a siezure when I passed out. My blood pressure was dangerously low at the next doctor visit. My doctor told me change my life or I was going to die. I was a new mom and barely 19 years old.

I think that my illnesses were happening because I was weak from the psittacosis and then I was not able to regain my health because i was very unhappy with where I was in life.

Anyway, I took her advice, change where I was in my life and did not get ill again.

Edited June 20, 2011 by 5KidzRUs

[Jean in Newcastle]

Could a food allergy/sensitivity possibly build up until sickness occurs? As in I don't get sick every time I eat it but maybe just when too much is in my body?

 

 

Do I call my Dr. in the morning and ask for allergy testing? This is one of the tests that I completed last week and I'm waiting for results.

 

My understanding is that yes, a food allergy to a "minor" substance can exhibit symptoms once you've reached your maximum exposure for that substance. (I don't know if I'm saying this well, so I hope I'm understandable).

 

Genova is a good lab.

 

I had a blood test for food allergies called an "IgE allergy test".

[Mom-ninja.]

Yep, when I went to the Dr. back in November she suggested that it was stress/anxiety. To be fair, when she asked me what I was thinking about when I was sick, I did tell her that it seemed I focused on negative things.

 

Well, that last 4x that I've gotten sick, I know for sure I was not stressed or anxious about anything. So I know it's not stress.

 

I think a lot of people think about negative things when they are not able to sleep and don't feel well. I think my sickness causes anxiety and not the other way around.

[Sushi's Mom]

Yes it is frustrating. Around the end of last year I started displaying all these serious symptoms akin to having something like a brain tumour or MS or something. Went through a battery of tests and saw many specialists but no one can work out what is wrong other then "it looks like some sort of auto-immune issue".

 

Most of my symptoms eventually cleared up but I still get a flare up every now and then. So my doctors are taking a wait and see approach. My next appointment is in September if nothing flares up before then.

 

Sewingmama, see if you can get an appointment with a neuro-ophthalmologist. About 20 years ago I started having symptoms of a brain tumor. The primary care doc told me I had low-grade MS. I did not. My eye doctor actually figured out what was wrong and sent me to a neurologist.

 

I was diagnosed with intercranial hypertension. The old name for this is pseudo-tumor cebri (some doctors don't know the new name.) Think of your Latin lessons, and you can figure out it means fake tumor of the brain. Originally called that because the symptoms are similar to brain tumor symptoms. Basically, the spinal fluid pressure is too high. Many doctors have never heard of it. It is considered a rare disease. Doctors are trained to look for the most common things, not the rare ones, that is why many times people who have rare diseases go undiagnosed for so long.

 

Here is the website for intercranial hypertension. Check it out and if you think you have a lot of the symptoms, find yourself a specialist for it.

http://www.ihrfoundation.org/

 

Good luck to you both!

[Mom-ninja.]

My understanding is that yes, a food allergy to a "minor" substance can exhibit symptoms once you've reached your maximum exposure for that substance. (I don't know if I'm saying this well, so I hope I'm understandable).

 

Genova is a good lab.

 

I had a blood test for food allergies called an "IgE allergy test".

 

My ds just had blood taken for the IgE allergy test.

 

I'm going to call them tomorrow and ask for a food allergy test. That way I can at least eliminate food that comes up on my test, and see if it helps.

 

I have to do something besides sit and wait.

[Running the race]

I know the feeling. I've have a similar illness, though I also had dizziness. The episodes seem to have slowed down. The doctors still haven't figured out what was wrong.

[Mom-ninja.]

I've read about CVS before. That was one reason my Dr. told me to try and manage stress/anxiety. My mother has migraines often. Well, I need to rule out other possibilities before deciding if it is CVS. CVS seems like it's what is diagnosed after everything else comes up negative.