Welcome to the spine community.
I'm afraid that its impossible to point you in a particular direction -- you've overwhelmed us with information that does not suggest a pattern. From your story, it is very difficult to follow a time line.
Are you currently talking all of these medications?
I think that neurologist did you a disservice with his vague mention of an idiopathic dysautonomia -- you're shooting in the dark when you pick autonomic diseases and try to match your symptoms. This is not diagnosis.
Ankylosing spondylitis is a serious disease -- if you had it, you would be in misery for much longer than three weeks. The symptoms are so severe and very debilitating. Please don't torture yourself by 'symptom surfing' the internet. You don't need the anxiety, believe me.
Let's talk blood work -- first eosinophils, which are another word for white blood cells. High levels of white cells indicate infection, allergy, parasites, or other problems. You just had a UTI, so one would expect Eos. % and absoultel Eos. from the urine infection. It must have been a hell of an infection, because you were treated with mutliple antibiotics. You would not expect hematuria (blood in the urine) without either acute or chronic kidney disease.
As you know, vitamin D3 is essential to calcium absorption. Low vitamin D levels are seen in people with primary hyperparathyroidism (parathroid tumor) but not without low serum calcium (hypocalcemia) from malabsorption.
With all the pharmaceuticals in your body, I'm amazed that any clinician would attempt a diagnosis. Do yourself a favor and read some of the side effects of these drugs. Then realize that most are metabolize through a small set of CYP450 enzymes and your body can only make so much of the stuff, so your dosing is going to be way off.
Are these physicians aware of all your medications? If I were your PCP, I'd bring in a PharmD to help me understand all the drug-drug interactions that may be confounding your symptoms, including causing some of these unexpected lab anomalies.
Mestinon is given to treat myesthenia gravis -- but you don't have this diagnosis. This drug, which can be effective against a diagnosis that causes muscle weakness could very well be causing your that very same muscle weakness and fatigue.
Methylphenidate (Concerta) is a CNS stimulant similar to the amphetamine class of drugs, that inhibits the reuptake of both norepinepherine (adrenaline) and dopamine), but is not as harsh nor as addictive as chemicals like dextro- or meth --amphetamine. You're also taking buproprion (Wellbutrin) which has a profound effect on these neurotransmitters, as well as serotonin. Lamictal (lamotrigine) is an antiseizure medication often used to treat neuropathic pain, and may affect these neurotransmitters.\
Are there any drugs that I've missed?
We haven't talked of celiac disease, and I hope that you've changed your diet to eliminate gluten -- while eliminating guten is today's big money panacea for all kinds of syndromes, the one circumstance where avoiding gluten is with celiac disease.
Untreated, celiac disease can cause all kinds of problems, including trouble om tje absorbption of vitamins and minerals, and in precipitating other painful conditions, like pancreatitis and in the producfion of gall stones.
When you ask "does anyone know what's causing this back pain?" are you referring to the "tickling pain" over your hip, the severe pain that made getting out of chairs difficult, sharp chest pain, stomach pain, or some other painful condition?
My eyes are getting to the point where i can't read what I'm writing, so I'll conclude with this -- you're trying to address too many issues at once. Have you heard the expression about "too many cooks?" This seems to be happening to you, and polypharmacy can be a real problem in the treatment of people like you who may have multiple, unrelated, conditions. Fibromyalgia and chronic pain may also be confounding your symptoms and causing pain.
Find either one very talented "head chef" to manage your "team", of consider entering an integrated treatment program, for example at Mayo, Hopkins', Chicago, or USC, where a team of specialists can cooperatively provide holistic evaulation of your medical treatment program, including taking a close look at all of your current medication by a pharmacy specialist.
Please don't neglect having a psycho-social team member work for you, also. I've found that in complext chronic pain trewat,, the pain psychologist is often the most knowledgeable and most effective team member in difficult cases for a number of reasons, with reason number #1 being their medical objectivity, and reason #2 being their ability to provide professional psychological support.
Finally, with all due respect to your intelligence, medical knowledge, and your ability to think like a doctor, please leave diagnosis to the experts, at least until you have such an evaluation.
If you've read any of my stuff here or in other places, you'll know that I encourage people to do exactly what you've accomplished in learning about normal function vs. youf disease state, and exploring all all treatment options, their outcomes, risk and benefits. I applaud your perseverance and ingenuity.
However, I feel that you've reached a point of diminishing returns in both diagnoses and treatment is out of control, perhaps because you've tried so hard to find relief. You're getting lots of attention with these conditions -- perhaps too much. This team sorely needs an effective quarterback.
So please allow a brilliant but objective diagnostician take control of the "team" for a while, and see what happens. Give this a chance, You will have a chance to participate, but I encourage you to lay back for a while, until you're satisfied with both a set of diagnoses and the treatment plan.
Your case is atypical of those we usually get here, and will require courage, confidence, and patience and perseverance. Please feel free to stick around and ask questions -- we're here to support you.
Best wishes and good luck.
Thank you so much for this.
I apologize for my crazy novel of a post, and I really appreciate you taking the time to read through it. This was the first time I actually typed out everything I've been experiencing for the past couple of years. There are so many mysteries. I'm sorry about the overwhelming amount of unrelated information. Hopefully I can be a bit more eloquent about this in the future.
As far as I know, my doctors don't communicate with each other. My PCP has referred me to the four specialists that I see--a gastroenterologist, a rheumatologist, a neurologist, and a psychiatrist. Every time I see these doctors, I make sure they have the most recent list of medications that I take.
I am currently on Mestinon, Concerta, Wellbutrin, Zoloft, Lamictal, Gabapentin, and Plaquenil. (I know. That's a lot of psych meds. I am only certain of one that works--the Lamictal, which I have been on for the past two years.)
I'm very afraid of people thinking that I'm diagnosing myself. Especially when doctors see the psych meds that I'm on--I'm afraid they will think I'm some sort of self-absorbed hypochondriac. I haven't brought up any of these conditions to them. People say that it's important to educate yourself and be your own advocate in the doctor's office, but I don't exactly know how to do that without seeming like a paranoid patient that's read too much on WebMD. This is all very embarrassing and frustrating. But I do know better than to diagnose myself. I've been desperate, which is why I've turned to the internet for information.
Regarding the pain, the tingling hip pain and severe back pain have occurred simultaneously, which is what brought me here. It gradually got worse over the past years, and then three weeks ago I woke up and couldn't get out of bed. There have been a couple of mornings which I considered going to the ER, but I don't know what a "proper" cause of going to the ER is, and I don't want people to think I'm wasting their time or begging for attention. I feel like the ER is only for heart attacks, strokes, bad asthma attacks, and horrible gory injuries. Anyway, I wouldn't go until I'd seen my doctor about it first. But I don't know which doctor to go to. I guess I should start with my PCP, right?
And also regarding the eosinophils (which I'm not worried about, really--I just want to understand them), they have been consistently elevated (slightly) for the past 6 years at least, long before I got the UTI. (I am not sure about anything prior to this. Up until I was diagnosed with celiac disease I only went to the doctor for the occasional case of strep throat.)
What questions do I ask my doctors to ensure they are taking my prescriptions into perspective? I don't want them to think that I don't trust them. How do I find a team that works together?
Again, I doubt myself. I'm wondering if this is all in my head. I'm scared and embarrassed. I'm afraid that I might be wasting the doctor's time. I'm not afraid of what may or may not be wrong with me, I'm just afraid that it's all in my head. I promise I'm not worrying myself looking up symptoms! Heheh.
You really are wonderful. Thank you SO much for your thorough reply.
You're very welcome. I hear that you get it, and that you and I share some of the same concerns. I also understand that you are the people's cat, which must be a tautology.
I'm an old veterinarian, not qualified to comment on your medical regimen, but i do believe you're medications are working at cross purposes.
Those teams of experts are found at teaching hospitals. Some of the best are Johns Hopkins (Baltimore), University of Southern California, University of California at Davis (my alma mater), Stanford U. Medical School, Duke University Medical School (North Carolina), Columbia Medical School (called P&S, and active in NY Presbyterian Medical Center), as well as places like the Mayo Clinic. (personally, when it comes to pain management, I have to recommend one hold the mayo). There are dozens more. These hospitals use a team approach to treatment. Let your fingers do the walking for a local university teaching hospital.Message me privately and I can probably recommend someone relatively close to you.
Remember, most doctors have the self image of a quivering bowl of jello, so go easy on them. They can usually only absorb one idea at a time -- theirs. So be kind and gentle with them.Stripped of their ego, they possess minimal self confidence, so many physicians need to be approached slowly by patients with some knowledge of medicine. Don't overwhelm them -- try to introduce one concept at a time. With the right kind of doctor,you may be able to develop a relationship with patience -- that's why we're called patients.
All kidding aside, many docs reject the idea that patients have anything to offer, and they read too much WebMD, and watch too much Dr. Oz.
They do respect medical research, especially alleged peer reviewed research. When I try to convince an MD friend of the biases inherent in peer reviewed papers, he fights like an animal backed into a corner. Referring him to Stew Leavitt's Pain Topics pages usually brings him around.
Wishing you love and happiness.
www.VitaminDWiki.com has many studies which address your concerns.
Typing "drop" into the pink search bar finds 347 pages with the word - many of those pages discuss the sudden drop in vitamin D levels.
The vitamin D half life in the body at your normal level is about 1 month, so I strongly suspect a health problem has come up which is consuming vitamin D
There are 10 studies of ALS and low vitamin D
The overview of Fibromyalgia and vitamin D has been seen by 120,000 people http://vitamindwiki.com/tiki-index.php?page_id=383
There are a great many reasons to use vitamin D3 instead of D2
There are "gut friendly" forms of vitamin D - which are essential if you are currently having gut problems - such as celiac
BioticsResearch makes one
Yes, D3 (cholecalciferol) is essential for the absorption of dietary calcium, and places a major role in both the diagnosis and treatment of endocrine disease.
But I cannot recommend that people with serious diseases self diagnose and treat themselves with random supplements.
While I appreciate the information included in your website, it requires a great deal of medical training to utilize the research presented. That training takes time -- time that many people who are suffering do not have.
Even though I disagree with much in today's medical business, I still believe that a conscientious and well trained allopathic physician is the best choice for helping a person with serious disease, and in some cases, a team of such physicians with multiple specialties.