[abbyrition]

I am undiagnosed - symptoms going on over 5 years.
First I was dismissed with IBS, back when I was able to deal with the symptoms better.
Over the last 3 years I have gone to a gastrointeroligist, primary care doc, gynecologist, colon/rectal surgeon, allergist and therapist.
I have had
endoscopy - h.pylori, treated with antibiotics
hydascan - low function, but in normal range
fecal smear test - normal
colonoscopy - pre-cancerous polyps removed. no regrowth within year. 2nd test clear.
scratch test - allergy to shellfish & tomatos - not helpful to issue
internal ultrasound- clear
laproscopy - clear for endometriosis, removed appendix for discoloration
Cat scan - small ulcer not related to pain issue. normal
Blood work - normal (low iron - had slight anemia all my life)

After all that both my gastro and gyno said there was nothing else they could do for me.
I went back to my primary that suggested I was having neuropathy in my large intestine and prescribed Cymbalta 60mg and Byntl 20mg.

I have since stopped both medications, with doctor's approval.
This is the good time of year for me. I don't have the issues often, so I have been trying to make the best out of it and work and play hard.
My problem is the last 2 doctor visits the doc was only concerned with my weight. When I discussed lowering the Cymbalta down to the 30mg because the nausea was too great, and it was concerning my appetite. I wouldn't eat at all some days. He was too consumed that I had lost 5 lbs since I saw him 2 weeks before. I dismissed his misdirected concern, and continued down our path. When I went back most recently his focus was again around my need to lose weight. I am overweight.
I fall just over that obese line the doctors draw. Healthy can be at the 30% bmi on the high end of the scale, and I fall at 33%. We are not making any headway toward discovering why I'm having pain and I am incredibly frustrated.
My problem comes in that I really hate trying to find a new doctor. Most of them haven't listened, or have even given me bad instruction. I'm not searching for pills or a way to get out of work, but it seems that's the attitude I get when discussing my issue with a new doc.
My issue flared this week, and I have been in bed for 5 days, and I MUST go into work tomorrow - regardless of how I feel.
I need to get this issue addressed asap so I am not missing more work, but I am feeling very defeated, and beaten by both my intestinal pain and by the medical professionals supposedly there to help me.
Someone please let me know some words of wisdom to help me keep fighting the good fight. I know what needs to be done, I just seem to be using all my energy battling my own body. Words of encouragement will help...

-----------------------------------Symptoms------------
Lower left abdominal pain - mostly severe, a good day is 5 or 6 pain level
fatigue - not just tired, can not get out of bed to brush teeth kind of exhaustion.
hot flashes - not related to any usual female concerns
dizziness
shakiness/weakness when I push through the fatigue/dizziness/hotflashes
stress seems to aggravate the symptoms to a worse condition
little red blood freckles
chronic conjunctivitis of the eye
insomnia
situational depression

[glenntaj]

--has suggested a celiac/gluten sensitivity possibility yet?

At the very least they should do blood titers for anti-gliadin IgA and IgG, anti-transglutaminase IgA, and total IgA (this last test, if it show overall low levels of IgA, may indicate skewing of the other test results).

You really should visit the Gluten section of Neurotalk (especially The Gluten File):

http://neurotalk.psychcentral.com/forum13.html

And have you been thoroughly investigated for autoimmune disorders (lupus, Crohn's)?

[pabb]

Originally Posted by glenntaj

--has suggested a celiac/gluten sensitivity possibility yet?

At the very least they should do blood titers for anti-gliadin IgA and IgG, anti-transglutaminase IgA, and total IgA (this last test, if it show overall low levels of IgA, may indicate skewing of the other test results).

You really should visit the Gluten section of Neurotalk (especially The Gluten File):

http://neurotalk.psychcentral.com/forum13.html

And have you been thoroughly investigated for autoimmune disorders (lupus, Crohn's)?

what glenn said...

[JA1717]

If you are seeing a primary (general practioner ) I would suggest seeing a internal medicine Dr. Or an endocronologist.

Have you been tested for low blood pressure, or diabetes ?
**************************************************
Some of your problems may stem from hormonal issues. Have you had a FULL( complete ) exam by a gynocologist? Some of these symptoms sound like pre-menopausal symptoms to me.
***********************************************
Perhaps a change of anti-depressants should be in order. There are several different kinds of course.
**************************************************
You comment that the hot flashes aren't related to any "usual" female concerns. How do you know that ? Has a Dr.told you this ?
**************************************************
Have you had your gall bladder out ?
***********************************************
Have you seen a Ortolaryncologist (Ear /Eye/Nose & Throat Dr.)?
************************************************** ***
Perhaps a daily IRON tablet, a mulitvitamin, might help you.
************************************************** ****
This might sound "crazy" to you, but how many times do you eat per day ? If you are only eating 1 or 2 times per day, your metabolism is either non-exsistent,or really sluggish. In other words, eating 5-6 small meals per day (with at least 6 glasses of water ) would help you to lose weight, and might make you feel better.
Continue to seek an answer....you never know when someone might help you

[abbyrition]

Thank you all for the interest on helping me diagnose. I would be happy to answer the questions, as I too am always looking to try to figure it out... More-over this post is how to deal with the frustrations with doctors, and the process in general. If you have additional advice on that aspect, please let me know what you have done, or are doing that helps when fighting the issue of getting a diagnosis.
@Glenntag - when I read through these boards, you are absolutely a wealth of respected knowledge. To answer your questions:
--has suggested a celiac/gluten sensitivity possibility yet?
Yes, my primary suggested that gluten may be an issue. While I've had this issue for 5 years, it really flared 3 years ago. My mother needed a place to stay so I let her move into my spare room. She took over the cooking chore to help out around the house, and she put us all on a diet. We at the following: Breakfast: Oatmeal with 2 tablespoons of benefiber added; Morning snack: lettuce & turkey lunch meat wrap (nothing added - turkey & lettuce, rolled) Lunch: white meat, green vegetable, whole grain rice with butter; Afternoon Snack: Sliced apples or celery & tablespoon of peanut butter; Supper: white meat, green vegetable, and whole grain rice; Evening Snack: Blueberry and Pineapple smoothie (skim milk 2 packets splenda & ice + frozen Blueberries) Also throughout the day we would drink 8 - 8 oz glasses of water (or more) and max of 1 cup of coffee.
We stayed eating this way for 6 weeks and then I realized the fiber intake was actually making me more sick, and I stopped. I'm not sure if the fiber just made my intestine more active, causing the negative issues to happen more frequently or if it's an issue with fiber itself (hence the reason I went to the allergist - but with no luck) Eating breads and carbs/sugars of all kinds make me happy, and don't have a negative impact on my digestion.
At the very least they should do blood titers for anti-gliadin IgA and IgG, anti-transglutaminase IgA, and total IgA (this last test, if it show overall low levels of IgA, may indicate skewing of the other test results). I've had a few blood tests lately, when the doc read the results he said all my levels look fine, except that my iron is low. That's not news to me. I have had low iron all my life. All my life it has been recommended I take a daily iron supplement. I don't because I don't care to take an unnecessary pills daily. (Low iron does not debilitate me from daily life, the only negative is I can't give blood at the blood drive, and even then, sometimes I can because I pass - so I usually still try<or used to before the last 3 years that is>) So my doc's recommendation is to take a multivitamin, and exercise more. I've even been trying to take the multivitamin more regularly, as the additional iron will help with the fatigue symptoms I'm sure, and well I like to keep working - so I'll do it. I just don't think that is the answer to my issue, and it feels like my doc has stopped looking. That's not okay with me.

And have you been thoroughly investigated for autoimmune disorders (lupus, Crohn's)?I'm not sure how "thoroughly investigated" I have been. I have been following the doctors lead on this, and doing what I can on my own side with research. I looked into the Crohn's symptoms and lupus right up front (I saw a commercial regarding Crohn's & my cousin has lupus) and I didn't really have the same symptoms as described for these two issues/diseases. It seems to be in the same vein, just not the same issue - if that makes sense. So I never discussed these with my doctor, as I figured they would bring them up if that were a consideration - to me they seemed the most obvious at the surface.

[abbyrition]

@JA1717
If you are seeing a primary (general practioner ) I would suggest seeing a internal medicine Dr. Or an endocronologist. Thank you for this suggestion. Can you tell me why you would suggest this? I just don't know much about the specialization.

Have you been tested for low blood pressure, or diabetes ? yes, most of my family has issues with diabetes, so every time I have a blood test I check my sugar levels. My blood pressure is normal, except when I have my pain days. I get BP spikes when I'm feeling the issue strongly.
**************************************************
Some of your problems may stem from hormonal issues. Have you had a FULL( complete ) exam by a gynocologist? Some of these symptoms sound like pre-menopausal symptoms to me. Many symptoms sounded like that to me too, so it was discussed at length with my gynecologist after and during several difference tests. The conclusion: I and my cycle are completely normal for me and am not pre-menopausal at all. There is a (non-female related) issue causing the hot flashes, as stated by my gynecologist. We did every woman test possible before she did the laproscopy as last choice to attempt to find anything causing my symptoms.
***********************************************
Perhaps a change of anti-depressants should be in order. There are several different kinds of course. I am not on antidepressants, nor do I wish to be. I was only on the Cymbalta for 2 months, and it was for the pain inhibiting feature of the medication. Though the mental features surely helped me work through some of the situational depression regarding my undiagnosed issue.
**************************************************
You comment that the hot flashes aren't related to any "usual" female concerns. How do you know that ? Has a Dr.told you this ?See above regarding your hormonal question.
**************************************************
Have you had your gall bladder out ? No, I did have a hidascan and it came back functioning at 15%, which is on the low end, but my Gastrointeroligist did not feel that was the cause of my issues, and decided since it is still in the normal range for function we would leave it in.
***********************************************
Have you seen a Ortolaryncologist (Ear /Eye/Nose & Throat Dr.)? No, can you tell me why you would suggest this? My problem and symptoms seem to go with outbound, not inbound...
************************************************** ***
Perhaps a daily IRON tablet, a mulitvitamin, might help you.My doctor suggested this, and I am taking one. It does not affect my issue or symptoms.
************************************************** ****
This might sound "crazy" to you, but how many times do you eat per day ? If you are only eating 1 or 2 times per day, your metabolism is either non-exsistent,or really sluggish. In other words, eating 5-6 small meals per day (with at least 6 glasses of water ) would help you to lose weight, and might make you feel better. I am not interested in losing weight. My doctor is interested in me losing weight, and focused on this instead of assisting me with my issue. I understand metabolism, and my own has slowed. I don't have a problem eating, I have a problem with portion control. When it was suggested my diet may be contributing to my health issues, I moved to a vegetarian lifestyle. This causes me to focus specifically on what and how much I eat to ensure I am getting all of the appropriate nutrition, all while avoiding meat. I work an 18 hour work day (with drive time) for 3 days in a row. I must eat small meals often to keep my energy up to continue through the long day. When I am home from work, I don't eat as often or as well, but most likely still healthier than the average American. I also use an app on my android phone to track calories - not for losing weight, but for the health aspect, and I find that stuff interesting. So could I do better - sure, who couldn't? But I'm certainly not doing horrible.
Continue to seek an answer....you never know when someone might help you Thank you! I am always on the hunt.

[glenntaj]

At the very least they should do blood titers for anti-gliadin IgA and IgG, anti-transglutaminase IgA, and total IgA (this last test, if it show overall low levels of IgA, may indicate skewing of the other test results). I've had a few blood tests lately, when the doc read the results he said all my levels look fine, except that my iron is low. That's not news to me. I have had low iron all my life. All my life it has been recommended I take a daily iron supplement. I don't because I don't care to take an unnecessary pills daily. (Low iron does not debilitate me from daily life, the only negative is I can't give blood at the blood drive, and even then, sometimes I can because I pass - so I usually still try<or used to before the last 3 years that is>) So my doc's recommendation is to take a multivitamin, and exercise more. I've even been trying to take the multivitamin more regularly, as the additional iron will help with the fatigue symptoms I'm sure, and well I like to keep working - so I'll do it. I just don't think that is the answer to my issue, and it feels like my doc has stopped looking. That's not okay with me.

Iron deficiency is definitely an indication to investigate for celiac/gluten sensitivity--the small intestine may not be absorbing the iron from your food that it should be--indeed, it may not be absorbing a number of nutrients.

Many doctors are not well-versed in nutrition, and many are not that aware of the celiac/gluten possibility (sad but true); you really need to get copies of every test you have, from the past and here on out, to see exactly what has been done and to track results over time. (I suspect you haven't had those tests I mentioned, which are a start for investigation into that possibility.)

[abbyrition]

I know this is an old thread, but if any of you that posted are still around I want to send out a thank you & let you know an update.
This year my hands and feet started tingling. I figured the PN my primary suggested I had was getting worse. I found a neurologist and started my search for what is wrong again. She ordered bloodwork (finally those tests you mentioned above Glenntag), as well as a EMG and Nerve Conduction test.
My physicals tests came back normal, without even carpal tunnel. However I has some abnormalities show up in my bloodwork, and she was concerned avout my ANA showing positive. She referred me out to a rheumatologist.
The Rheumatologist spent over an hour with me asking questions and doing a physical exam. He diagnosed me with SLE (lupus) with sicca, possible Sjogren's as a secondary - though no tests were done to further confirm the Sjogren's.
I've started taking plaquinol and medrol, as well as a vitamin D3 and B12 suppliement.
If you're interested in the acutal bloodwork results, I can post or message them to you. But I figured you might like to know one of your first guesses was correct.
Oh and a side note, the Rheumatologist doesn't think I have PN at all, that the pain in my abdomen all this time is a hernia. 7 years, and no one was willing to listen and actually take interest in the problem. Thank you to two good doctors - finally, and to the wealth of knowledge from the people on this board!

[Hopeless]

Sorry to hear about your diagnosis but glad to hear you finally got one and had someone listen to you. Thanks for sharing the update.

[ginnie]

Welcome to Neuro Talk. The other post with tests would be a good idea. I also think you need to find another physician who will listen to you and not dismiss you. If you can find a physiatrist, that type of doctor tends to treat the "whole person" My particular doctor specializes in pain management. Don't give up just because the doctors you have seen cannot make a DX. If you are experinencing pain, you need to continue on and try to find out what the medical issue is. I hope this happens for you soon. ginnie