Don't know where to turn...

[Chase1313]

Hello,

2009 has been the worst year of my life as it relates to my general health.  Starting at the end of February, I've been dealing with a "bout" of IBS.  It affected my appetite and all-told, I lost about 25 pounds, with other symptoms of lack of appetite, floating stools, and abdominal pain.

I went through a gauntlet of tests including an abdominal ultrasound, small bowel follow-through, colonoscopy, EGD, stool fat tests/cultures, blood tests, 2 abdominal/pelvic CT scans (one with a close look at the pancreas) and 2 ER visits.  All tests normal (did I mention I'm only 31??).

My second GI said that after all of the tests, IBS was the culprit, and that the weight loss was due to a change in eating habits related to the IBS symptoms.  The explanation makes perfect sense.

Enter now, 6 months later, some general difficulty breathing (lungs feel tight and I sometimes wheeze or cough) and several lumps on the left side of my neck.  One above my throat, one right next to my throat, one next to my jaw below my ear, and the most concerning one right by my left collarbone.  They've all been noticeable for at least 8-10 weeks.  I've had trouble breathing now for over a month...it comes and goes with the occasional cough...I've had 2 chest X-rays that came back normal.

Neither my GP or ENT were concerned.  My ENT put me on a course of antibiotics, but with one day left, the lumps are still the same size with no improvement with my breathing issues.

My weight has been reasonably steady since going on Belladonna for IBS, with occasional weight spikes and dips depending on my appetite or if I have a stomach virus.

Additionally, I just came to the realization that I've been sick every 4 to 6 weeks for almost two years now.  Every month of 2008, I got nasty colds.  This year, I started with flu-like symptoms in Jan. & Feb., colds March thru May, and stomach viruses every 5-6 weeks since June (nausea, vomiting, dizziness, etc, for a day or two).  I never have fevers, but get chills.

I'm going to end up with another CT after the antibiotic because the lumps haven't gone down.  But my docs aren't concerned because the lumps are all under 1 cm.  I just don't know what to do or where to turn at this point.

I can't handle feeling sick anymore.  I honestly don't remember the last time that I felt good for more than a day at a time.  I had a second opinion for the IBS, but I'm wondering if I need a second opinion overall???  

My GP is convinced that if there were something seriously wrong, it would have been discovered by now with all of the blood tests and imaging scans.  But, SOMETHING is wrong.  I don't know what to do.  Any advice, any suggestions, any positive re-enforcement is desperately needed.  I am so sad and feel so desperate...I'm on Celexa now for anxiety and depression, but it doesn't seem to be working.

Could someone offer me a direction to go?  Sorry for my lengthy post and thank you for listening.

[SassyLassie]

I forgot to post what the Mayo clinic has to say on this, it sure sounds like what you have written.

Symptoms
By Mayo Clinic staff

People with chronic fatigue syndrome may experience a variety of signs and symptoms that come and go frequently with no identifiable pattern.

Primary signs and symptoms
Chronic fatigue syndrome has eight official symptoms, plus the central symptom that gives the condition its name:

Fatigue
Loss of memory or concentration
Sore throat
Painful and mildly enlarged lymph nodes in your neck or armpits
Unexplained muscle pain
Pain that moves from one joint to another without swelling or redness
Headache of a new type, pattern or severity
Unrefreshing sleep
Extreme exhaustion lasting more than 24 hours after physical or mental exercise
Additional signs and symptoms
In addition, people with chronic fatigue syndrome have reported other various signs and symptoms that aren't part of the official definition. These include:

Abdominal pain
Allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
Bloating
Chest pain
Chronic cough
Diarrhea
Dizziness, balance problems or fainting
Dry mouth
Earache
Irregular heartbeat
Jaw pain
Morning stiffness
Nausea
Chills and night sweats
Psychological problems, such as depression, irritability, anxiety disorders and panic attacks
Shortness of breath
Tingling sensations
Visual disturbances, such as blurring, sensitivity to light, eye pain and dry eyes
Weight loss or gain
If you have chronic fatigue syndrome, your symptoms may peak and become stable early on, and then come and go over time. Some people go on to recover completely, while others grow progressively worse.

When to see a doctor
Fatigue can be a symptom of many illnesses, such as infections or psychological disorders. In general, see your doctor if you have persistent or excessive fatigue.

The earlier a person with CFS receives medical treatment the greater the likelihood that the illness will resolve. In addition, severe fatigue that prevents you from fully participating in activities at home, work or school may be a symptom of an underlying medical problem.

[SassyLassie]

It sounds suspiciously like you could have chronic fatigue syndrome. Many patients that have this experience the same type of symptoms that you are mentioning. Ask the doctor to order a sed rate blood test, this will often times show up any hidden infections.

Also, if you have taken a lot of antibiotics, you could very have Candida as well, ask for the stool test for this, the blood test is not as accurate.

I think if you have both of these tests done, they just might find the "hidden" cause.

Good luck and please keep us posted.

[opinmin]

Are you running and fevers?  Any chills?

[godson28]

Hi chase 1313,
Im having about some of the symptoms you've listed and my tongue comes white every morning but if i brush it, the white patches goes and come back by  the end of the day. i have been through antibiotics, cbc and personally nothing serious has been found. my doctor told me that there is a lot of acid in my body and stomach( so use antacid or by milk of magnesia at raid aid) and he refered  me to an gastro, so, my next step will be endoscopy. im so stressed too, and don't even know what causing that floating and sink stool since i started to be sick. i 've read on the internet that CANDIDA ALBICAN as virius can also be cause of stomach acid and chronic indigestion and even acid in all the body. another doc told me that it is my eating pattern which has changed or not good but till now im suffereing too, please help us,thanks

[Chase1313]

Thanks for the reply.

You're correct, they did do blood tests such as CBC's and thyroid panels.  Neither my GP or ENT doc are concerned due to the size of the lumps (which they believe to be nodes.)  

All of the tests, meds, and doctor visits are just starting to get to me.  Thank God for insurance.

I just ended a round of antibiotics, but the nodes are still enlarged.  I guess now I get my third CT scan this year and see if there are any enlarged nodes hiding that aren't detectable from a physical exam.

Thanks again for your reply.

[margypops]

I am sorry you are feeling so bad, it is miserable when you dont know what is wrong but your body tells you something is, we have expert/Doctor forums here on MH you may also want to try for more anwsers.Did they tell you if the 'lumps' are Lymph nodes as that can be normal if you have an infection what about the blood did they do a CBC I am guessing they did,was all that good.I am wondering if it is autoimmune,some of the symptoms could be similar to those of  Lyme /Lupus several others, do you get a rash anywhere. Fructose imbalance could cause the stomach symptoms .Check out the other forums we have the ones on the right are the expert forums Good Luck let us know how you are doing..