Posted 3/20/2013 12:08 AM (GMT -6)
To lowbrainpower - Sorry, but I likely won't be brief, bear with me! -
I have had a lot of the symptomatology you describe, so you're not alone. I know you've likely had a lot of tests done, etc. so try not to immediate dismiss what I say here, please - I work in medicine (in surgery) and can tell you that medical testing is not foolproof, medicine is and will always be learning(at least in our lifetimes). Lots of the conditions we recognize now were dismissed/misdiagnosed just a few years ago, like lupus, fibromyalgia, autism; the rule had always been, if you can't explain it, then it isn't! Slowly that philosophy is starting to erode, as physicians finally admit there's a lot we don't know. The body is completely interconnected, often in ways we cannot explain. So when someone tells you your symptoms have nothing to do with your "condition," don't just accept that! If you're feeling it, then it's real.Just because we don't have a fast answer, doesn't mean there isn't one or it isn't real...we just haven't figured it out yet.
That being said, I have to tell you that a lot of the symptoms you described (migraine syndrome, unable to eat/drink, Chronic daily pain
Brain fog, Cognitive Dysfunction (memory loss, inability to focus and concentrate, trouble reading and comprehending, etc.),Severe fatigue
Severe head pressure that never goes away,Dizziness (not vertigo) and tinnitus,Unrefreshing sleep,Dull sensory perception,Chronic sinus and nasal inflammation) are those I routinely experienced prior to going to a gluten-free diet. Yes I know you probably had a colonoscopy &/or blood work to rule out celiac, but I am referring you to the Celiac Foundation website and its director, Dr. Fasano. Celiac and intolerance are not defined like most doctors think - the research is VERY current and ongoing, and most doctors do not read this stuff daily(it's a lot to keep up with, believe me, and for docs who do not deal with a specific topic on a daily basis, they rely on what they learned in med school or from a lecture or pharmaceutical rep). That's why they specialize, right?
Seriously, please start with that site and educate yourself on the topic. It is involved, but once you start to understand, you will be able to see how it is impacting your life. For instance, why would even drinking water sicken you? Because your gut is so very inflamed! Please note: The gluten sensitivity blood test is not definitive, there are many false positives/ negatives, and in someone who isn't eating regularly, the likelihood of a false negative is considerable. Also, colonoscopy may not detect the telltale signs of erosion, because it may be confined to one small area that the scope cannot reach...many people are totally asymptomatic or have conflicting symptoms, at least in the "classical" sense...many docs/pathologists are not familiar with the new tissue classifications signifying intolerance...gluten is hidden in places you wouldn't suspect, like the glue used on postage stamps, so the chances of contamination are high...we don't yet know how extreme the damage can be, or how diverse the symptomatology may actually be. We do know that it is the second largest event (second only to lactose intolerance - nut allergies are a far distant third place by comparison and it is estimated by some that gluten intolerance worldwide could be as high as 50% of the population). Given that everything in the body is somehow connected (no body system works in strict independence), it goes to follow that what is impacting your gut and therefore your immune system, is impacting your entire body. So many posts here describe IBS (a typical gluten intolerance indicator), Crohn's, etc. These are symptoms, actually, and so medicine treats just these rather than identify the real culprit. Consider - women diagnosed with endometriosis are placed on a gluten free diet, and experience relief. Think of the mechanisms involved there. When you learn a bit more about the cellular exchange that happens in your gut, you'll understand what I am getting at, and some of what you are experiencing may start to make sense. The site I mentioned breaks it down to layman's terms.
Not to second guess your neuro guy, but unless you have an identifiable leak, personally, I would opt out of the blood patch, at least until further testing. Don't forget - every procedure has risks! Docs themselves tend to forget/overlook that, given the volume of procedures they often do, and you don't want to fall into the pattern of "Let's try-" because they earnestly want to make you better but don't necessarily have an answer (kind of like when things go wrong with your car, and you start replacing parts bc maybe it's the alternator, maybe the battery, maybe the wires, the rotor...maybe you manage to hit on it, maybe not). Make sure you understand what the objective is, why they justify it, and be satisfied that all your questions are answered. Do start carrying around a notepad, and write everything! Thoughts & questions & emotions that come to mind; what & when you eat and how you feel before, during and after; bowel habits (yeah, IK, yucky!) including appearance; symptoms, time of day, activity at that time; eating & sleeping patterns, anything. Then you can start to sort stuff out, like perhaps stress is causing tension headache (just bc you have migraines doesn't mean you can't get tension headaches!) or muscle stiffness, etc. And try to have someone come with you to your doc visits, preferably someone who is not afraid to ask questions or make comments that may be potentially useful, like noticing you reacting a certain way to something you ate (symptoms you might not notice, like your coloring).
Okay, this was very long, and if you actually got to the end, congrats!! You have a lot of stamina, lol! Sorry for the length, hope it helps to know you are not alone and there are places to start looking for better answers. Best of luck - stay in touch!