DAN! stands for Defeat Autism Now, although many of these doctors see other patients as well. The one we saw also treats adults and a wide range of conditions such as~ http://www.pathwaysmed.com/menu/serv...rvices100.html

I cannot give a thumbs on all the doctors you'll find listed on the links above... because I don't know them... but they may look for and consider things and offer treatments that your other doctors haven't thought of. You most likely won't find any of these guys on your insurance plans if you must stick to a list, but if you are free to choose your own doctors then they should be covered.

Cara

Hi Ideal,

Sorry to hear you're having this ongoing problem with no answers from the medical community. Been there...done that...ain't no fun.


Yup Cara's right, I did/do tango with diverticulosis/itis. I see that you have had numerous tests to rule that out. I feel the GI doc missed the diverticulae during a colonoscopy BEFORE I had a major attack. It was dx'ed by a flexsig procedure done by a primary care doc. Grrrrrrr

Do you have lower back issues? If you stated that previously - sorry I missed it. I have that same feeling at times. I think always baffled the docs with my back pain. It's very specific, I move just in the right manor and will feel pain. I often have a hard time trying to figure out if my left side pain is truly coming from the front [diverticulitis]- or if it just "feels like" it's coming from front but is originating from the back. I know when I aggravate my back, I feel it on the front left side (around the hipbone bone) too. My left lower back is where my problem lies - I have annular tears in the discs surface. A lower back problem could explain the pain shooting down the legs. Back problems can be hard to dx unless you get someone that is well versed in that.

I have neurological issues too. Many of them cleared up when I went GF, some of them have not. I still have peripheral neuropathy in my hands, feet and legs [plus a few scattered spots]. Disappointingly, my PN has not cleared with being GF. I do notice changes in my PN with dairy.

I wish you well in your Knowledge Quest. Keep searching for answers...

Thanks again, everyone. Y'all are every bit as awesome as Cara promised you'd be. I wish I had more specific symptoms to write, because I'm sure it might help. But everything about this illness has been so erratic and confusing. My GE complications can run the gamut from mild tenderness to extesive pain and swelling. Sometimes I have diahrrea for a month, and then it just stops for two months, all with no obvious reason. I've kept diaries, tried diets, starved myself. It's just a very strange disease, and it keeps on progressing. If it ever gets into the right side of my body I'm afraid that the pain will push me over the edge.

I have one last question, though, if it rings any bells in anyone. Have any of you heard of a muscle-wasting illness that began in the abdomen and then spread outward from there?

Hi Idealist,

I know I was overwhelmed when I was trying to figure out what was wrong with my digestion. I think the best way to manage it is to make a list of what you have been tested for and another list of what possible things you should be tested for. I had one doctor who looked at what I had been tested for and saw it as a good thing that certain things could be ruled out. I was just frustrated, and I saw the wisdom in at least knowing what I didn't have!

I'm wondering about the suggestions you have been given, because you did not indicate if some of these things had been tested for and ruled out, such as hernia, parasites, etc. I guess I'm still wondering about the parasites/pathogens because they can be cyclical in nature.

Probiotics are living organisms that are beneficial for your digestion. Your digestive system has many different kinds of bacteria that help you digest your food. There are certain types of bacteria that are not beneficial that also live in your gut, and if they get out of balance, they can wreak havoc with your digestion. When you take antibiotics orally, they destroy all the bacteria in your gut, good and bad. Because antibiotics do not distinguish between benefical and pathogenic bacteria, you need to replentish the good bacterial through probiotic supplements, or the pathogenic bacteria can become dominant in your gut again. Pathogenic bacteria can overpopulate in your small intestines or your large intestines.

Also, it's a good idea to be tested for Candida if you haven't already. This is a pretty common problem, especially if you have a history of antibiotic use. My GP did not test me for this, and I thought it was a major oversight. I didn't end up having Candida, but I'd rather be tested for the "simple" things. Sometimes, I think doctors order expensive and invasive tests when a simple stool test will find the answer.

Also, it seems like you have yet to be tested for food intolerances? Like someone else mentioned, there could be multiple things going on with you right now. It's good to make a list of all these things and start checking them off as you get tested for them.

Claire

There is Whipples disease, a gastrointestinal thing that can cause systemic and neurologic symptoms. I don't know much about it, but it is discussed in an article I have on the neurological manifestations of gastrointestinal disease. It is a rod shaped bacterium, I think.

Long shot? I don't know enough about it or your symtpoms to make a guess~
http://jnnp.bmj.com/cgi/content/full/68/1/2

Cara

Oh yeah, Mystery Diagnosis did a show on a man with that. He was very secretive about his health issues and was embarassed by his symptoms so his doctors had a devil of a time helping him. It was a shame since it progressed quite far.

Follow up on ALL of the great advice already given! Lots of excellent ideas, already shared with you!

Several more questions, as food for thought:

1) Have you been checked for "atypical" APPENDICITIS? (which sometimes can hide from many docs)

2) What are all MEDICATIONS that you took & are taking?--by mouth, by intramuscular injection, by intravenous injection, topically on the skin, on the scalp, etc. --both prescribed and over the counter, vaccinations, herbs, supplements (thinking of possible contamination if from out of the country, etc.) , Chinese herbs, etc. (wondering about possible adverse side effects of any of these)

a) any acid blockers? (these cause nerve damage, to either peripheral nerves &/or to central nervous system, by preventing absorption of dietary Vitamin B-12. HAVE YOU HAD YOUR B-12 BLOOD LEVEL MEASURED? IF YES, WHAT WAS THE RESULT? OTHERS KNOW MORE ABOUT THIS, INCLUDING ROSE AND MRS. DOUBTFYRE, ETC.

b) "statins" (cholesterol lowering drugs) can cause "rhabdomyolysis" which is MUSCLE DESTRUCTION, that can lead to kidney damage (Lipitor is a statin, for example).

3) What other medical conditions do you have? (with or without taking meds for them)

4) What was different, around the time this first started? (work location, home location, air quality, diet, etc.):

a) What kind of work do you do? (in case of occupational connection, regarding ergonomics, or toxic exposure, etc.)

5) Have you had any:

a) accidents/injuries

b) operations/surgeries,

c) dental procedures, such as root canals, etc.,

d) silicone exposure?

e) heavy metal exposure? (Chelation therapy can help with this)

6) What is the source of your drinking water supply? (thinking of water borne infections possible, &/or problems with water treatment chemical overloading)

7) Have you been checked for possible Arnold-Chiari Malformation Syndrome (can be congenital/born with, or acquired, I think)

Carol
http://cantbreathesuspectvcd.com