One Sick Mother

You Trust The Wrong Person, Your Kid Gets Burned...

My Daughter, Grace Has a best friend, who we shall call Mary for the purposes of this blog. Grace and Mary are typical 8 year old girlfriends: The are inseparable, yet constantly bickering and fighting. They remind me very much of myself and "N" when we were that age, and "N" and I are still friends. So I have a lot of hope for Grace and Mary and I do my best to accomodate their friendship, despite the drama and the  many ups-and-downs.  It's quite entertaining, actually. Yes. I have little to amuse myself these days...

Anyhoo, the girls had stayed with Mary's mom on Saturday night and yesterday was Mary's 'custodial arrangement day' with her dad.  The girls wanted to go to the local outdoor pool and Mary's dad offered to take them both, I agreed. I spoke with him beforehand, telling him what Grace is and is not allowed to do: i.e. she can swim in the deep end, she can go off the high-dive board, dietary restrictions... you know. All that usual parent stuff.  I said "The only thing I am a Nazi about is sunscreen. You can see how fair Grace is,. She burns very easily. You really have to slather her with factor 50".  He reassured me to death, Mary is the same way (she is). He has a brand-new bottle of factor 50. All would be fine. He is a medical doctor and a dad so I let it go, despite a nasty little niggle I had somewhere between my gut and the small of my back.

Grace was deposited rather unceremoniously on my doorstep at 4:45-ish. She said she had had a good time.

As we usually do on Sundays, I took my kids out for dinner in Friendly's while my husband had his soccer game. It is our time out alone, and we like it. I sat in the restaurant and watched Grace's face turn pink. First under her eyes, then a patch at the the side of her face, then her forehead. Then I noticed that her chest was red.  Then the space under her eyes turned from pink to red and started to puff, and the initial pink areas turned red, while the rest of her face turned pink and everything got progressively darker and darker. Throughout dinner I watched my daughter turn redder and redder as the sunburn developed and all the while she was chattering happily away, completely oblivious to the fact that she was burned and would probably be up all night crying. Not to mention the cancer risk.

I couldn't finish my meal. In fact I barely made a dent in it. Joe scolded me: "Why did you get a big kids' meal if you weren't going to eat it? You should have gotten a little kids' meal." There is no arguing with that logic. It is mine. Verbatim.

As soon as I got home I called Mary's dad.  I pointed out to him that I had always taken utmost care of Mary when she had been with us, wherever we had gone. That she had spent many many hours in our care and had always been fine. I had always treated her like one of my own. I asked him why he thought it was appropriate for him to repay my care of his daughter by taking my daughter out for one day and returning her burned?

He flustered about both girls being "a little bit red". As he had not seen Grace in hours. I don't know how he felt he could make that claim. I corrected him: "She is way more than "a little bit red". She is burned".

Then he blamed Coppertone.  That's right. Coppertone. The sunscreen people.  "I put the coppertone on her. The coppertone must have failed."  Had I been wearing heels, I would have fallen off them.  However, He could not explain how the coppertone appeared to have worked on parts of her body, like the center of her back, which looks kind of  like a reverse target, and some splashy  effect on her left shoulder.

I asked how the sunscreen was applied: According to him, The girls applied it on themselves (What?), then he allegedly went over it again.  Hero that he is, he even insisted on continuing after they became bored with the process.  "As is appropriate for the adult in charge" I told him. "Thank you for pointing that out" said he. What was he expecting? A medal? For allowing her to get burned only in patches instead of all over?

However, I explained the problem very succinctly. Not coppertone: "Negligence." He didn't like that truth.

You know, had the man sucked it up, taken the bollocking, accepted responsibility, apologized to my daughter -not to me, she was the one who got hurt. (He refused to speak to her when I offered to put her on the phone. "I am not playing these games" (?)) and acted like an adult, I would have been fine with that. But this squirming, defensive, argumentative dodging of the issue was just sickening. From a dad and a doctor, no less!

It is easier to see the damage in this picture than in the one I posted originally. The center of her back was obviously sprayed. You can also see some white splotches on the top of her left arm, where she must have gotten splashed with some sunscreen. And yet, according to Doctor Dad, this burn is the fault of Coppertone, and not his negligence.

Who thinks I should sue Coppertone? <looks around> No-one? Thought so.

I am posting this here so that Dr. Dad has access to it. He refused to give me his e-mail address. I asked for it when I offered to prove to him that she was more than "a little bit red". So now all of you can post your comments here tell him what you think of the effect of his inaction on my child.

He says I am overreacting. Am I? If it was your child, wouldn't you be be furious too (and the front is worse)?  Please leave your comments to this one. I really want to know.

Stinker

I had a rare night out with a good friend the other night, and she said something to me which made me laugh so hard, I almost fell out of my chair. Then she used an expression I have heard for the first time, and will doubtless hear again (a lot). "Now don't put that in your blog!".

So I am not putting that in my blog. But I am putting the other in.

Amn't I a stinker?

(Don't answer that)

Cow

There is an Omaha Steaks near my house. I never noticed it until a few years ago, when a friend visiting from out-of-town remarked upon it: "Ooooh you are lucky! They have the best steaks". Whatever. It is out of my way and steak is expensive.

However, I have been eating a lot more protein recently of necessity and am feeling rather chickened out (in the other sense of the word). I happened to be right next to Omaha Steaks for something else and decided to pop in and have a look at their wares.

Now I was raised in Ireland, right across the street from a butcher shop. I well remember Farren's (the butcher's) and the two ancient old men who worked there; Barney and Anthony. They were ancient when I was 5 and still ancient when I was 25. For all I know, they are still there, now truly ancient. I like to think so although the odds are ...well, nonexistent.

I remember Farren's so well: Watching the deliveries of half-pigs and half-cows that used to be unloaded right in front of my house. I remember the sawdust on the floor on rainy days and watching those incredibly accomplished old men; who I always imagine should have an unfiltered cigarette hanging out the side of their mouths -but who never actually did (they were professionals). They could easily carry half a pig from the fridge but in the next instant could  tie up a roast perfectly with those purple knobbly, long-fingered but skilled hands, all the time bantering about the weather or commiserating with Mrs Fox about her rheumatism (which was bad).  It was a wonder to watch them carve meat; the well used knives so accurate, they appeared to have developed some kind of independent memory. I remember the sound of the mincing machine. (they always made mincemeat fresh to order right there) and the bone saw and the gossip of the old biddys as they stood in line. ("Did Mrs McKenna have her baby yet?"
"No not yet. I'm dying to see who it looks like though."
"Who do you think the father is?"
"I don't know, I just know it isn't Mr McKenna!  (bawdy laughter))

So yes. I had a very fixed idea of what a real butcher shop should be like: the smell, the bloody aprons, the  knobbly hands, the big old scales, the sawdusty floor.

I walked into Omaha steaks and I almost walked out because I thought I had mistakenly entered the optician's next door. There was carpet on the floor!  And the wall were lined with glass cabinets!  I was about to leave, when I spotted a sign that said "Pasta and Sides" (or something) and I realized that I was in the right place. Sorta.

The glass cabinets were refrigerators or freezers or something. Nary a bloody apron in sight! I told myself I'm not in Ireland anymore and this is the 21st century and I decided to give it a try...

The soft, well groomed khaki-clad man behind the counter asked if he could help me.  I looked around confused, looking for some steaks. You know how you like to pick the ones you think look the best?  But  there was nothing resembling a steak in the place. Not even a picture of a steak! There were just the rows and rows of freezers all filled with stacks and stacks of boxes. Without any visuals, I didn't even know where to begin! "I-I need some rib-eyes" I managed to stammer out.  He bee-lined to one of the freezer cabinets and chose a box from amid a stack of identical boxes. He opened the box. Inside were four identical, over-trimmed, shrink-wrapped, frozen, pieces of unidentifiable meat. I had to take his word that they were rib-eyes, (no "eye" was in sight). But they at least appeared to have come from a cow. 

Then I had an idea. I had heard of bison, and I wondered if they had any? After all, I had broken out and was buying meat here in the Twilight Zone, right? I may as well go all out and try something exotic. I asked.
The Soft Man looked incredibly disapproving "Bison? No. We don't sell bison here"  "Oh. Just cow? I said, with a bright smile, trying to dispel the huge dark cloud which had suddenly entered the room and was clouding up all the pristine freezers. Soft Man reluctantly remembered his community college-drilled manners,  smiled and the cloud started to fade. "Yes.  Just cow.  That will be $49.95, Would you like anything else?"  I shook my head weakly and staggered after him to the register, trying to calculate how much that was per steak (about $11.50 I realized afterwards).

So I handed him my credit card, and things went from weird to ridiculous:
"Debit or credit"
"Credit"
"What's your phone number, please"
"I don't give out my phone number"
"We need it for our mailing list"
"I don't want to be on your mailing list"
"OK. Well we don't have to put you on our mailing list, but we need it to track your purchases"
"I don't want you to track my purchases"
"well, we do."
"OK Fine." ...and I gave him my phone number (or a rough approximation). Satisfied that he had won round #1, he read my name from my credit card.
"So ...Paula. What's your address, please?"
"I thought we already discussed that I don't want to be on your mailing list (and the line behind me has been steadily growing all this time. I didn't care, but I could see Soft Boy throwing anxious glances over my shoulders. No doubt Big Brother was watching via CCTV back in Omaha and deducting money from his employee incentive bonus by the second.)
"Yes I just want your address, Paula and then I will check the box not to put you on the mailing list.
But if you are not going to mail me anything, why do you need my address at all?"
Well, Paul..."
..and with that, I reached behind the counter, grabbed my credit card right out of his hand and said "you know what? I just came in here for steak. Not a brand-new stalker. I would rather go hungry than deal with this shit."

And I walked out.

Yes, I am a cow. I admit it. But where the fuck does non-butcher soft boy get off calling me by my first name? Even the ancient old dudes in Farren's used to call me "Miss R". Of course they couldn't remember which one of four sisters I was, but still!  Who wants to get over-familiar with the butcher?

Mrs McKenna, perhaps. But not me.

Cookie.

So a friend asked how that cookie worked out for me yesterday?

Not good.

As often happens with me, the reaction was delayed. I was OK until about 6:30pm-ish then I started to feel well,  ...not good.   By 8pm I was in bed in one of those awful non-sleep sleeps that one epileptologist said looked identical on EEG to one of my seizures.  Which would technically make it a seizure, I suppose.

And an unexpected side effect: Both last night and today my EDS joint pain is much worse.  I have said it before and it is so true:

Sugar is my Kryptonite.

Now I just need to find whatever is the opposite of Kryptonite to me, and I will be all set!

Toast.

When on a ketogenic-type diet one must consider every single morsel which crosses one's lips. I mean everything. I have even had to scrutinize all my vitamins. I actually had to change one brand of Vitamin C as it contained sucrose and other sugars. I am not allowed to have sugars of any kind.

I got so sick of reading labels and questioning stuff, that it just became easier to decide that I couldn't eat any normal food at all. Everything was out of bounds. Then I picked out out a few safe foods that I *knew* I could eat without consequence and I just stuck with those. Eggs for breakfast, tuna salad for lunch... This is not recommended by the professionals, BTW, but this is probably what most normal people who want to spend their mental energy on more than meal planning do in practice. Sorry professionals,  but it is.

As I mentioned previously on this blog, I have started taking a low dose of Topamax recently. Topamax is most well known as a preventative medication for chronic migraines. I find it laughingly ironic that it seems to create headaches in me. Not migraines, but a pretty severe headache all the same. I tried to research this, but Topamax-generated headaches do not seem to be mentioned very much in the literature that I found. The medication is much touted as a headache cure, but not much said about it as a headache cause. As a lot of the available documentation probably originated with the manufacturer, this is hardly surprising to me.

However, as I researched Topamax side-effects for this information, I learned some other information about Topamax: It can inhibit one's ability to sweat, causing hyperthermia. Nice to know in New York as we are heading into July. It can also cause kidney stones and should NOT be used in conjunction  with a ketogenic diet. Ever.  ...WHAT???? 

But I'm on a ketogenic diet!

#25 never said anything to me about this!  Now I hardly think I have developed kidney stones in four days, but I have been second-guessing this diet for some time. It is not good for me, period. and I need to find a healthier way to eat. So maybe, as the Topamax is theoretically supposed to control the seizures anyway, now is the time to come off this crazy diet?

And so this morning, I spent some time contemplating my eggs and wondering if today would actually be the day that I break the diet and have some toast?

I have to tell you, and it seems weird -even to me, who scrutinizes every morsel- that I spent an inordinate amount of time standing in my kitchen internally debating toast with myself . I don't even like toast very much. Especially not this soft, sweet, textureless white bread (why should American bread be sweetened? Bread was never sweet in Ireland!) toast, which tastes like sweet cardboard.

But I should eat carbs, right? I should break this ketogenic thing and eat in a more normal and healthy way: Whatever about the toast; once I make the step and break the diet, I can eat other things. Vegetables are good. I need to re-introduce vegetables into my diet... 

But it is very difficult bring yourself to eat something if you know there is a very good chance that that food  will give you a violent convulsion later that day. People ask me how can I stick to such a restrictive diet, but the answer is pretty easy. The fits, which are the usual consequences of breaking the carb-free diet are violent,  painful, distressing and life-disrupting for me. Lessons learned this way are not easily forgotten.

So I stood in the kitchen for a long time, looking from the bread to the toaster, debating with myself and trying to overcome my fear, all the while knowing in the back of my mind how ridiculous it is to be afraid of a piece of fuckin toast! This does not happen to normal people.

In the end I left the toast there. I decided a piece of sweet cardboard is not worth the risk of a seizure.

...Not when there is a box of Girl Scout Cookies right next to the bread!  After all, If I am going to be punished with a seizure, it may as well be for something I actually enjoy!

Not Otherwise Specified

I cannot claim to have read the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, Text Revision (DSM-IV-TR) for laughs. In fact, I can't claim to have read it at all.  However, as an Autism mom, a sick person and a ceaselessly inquiring mind, I have read far more of it than I ever thought I would and waaay more than I ever wanted to.  But  necessity is the mother of self-education ...or something, so over the years, I have read large chunks of the DSM.

I love the term Not Otherwise Specified (NOS). It is all over the place in the DSM. Wikipedia defines it as a "DSM cautionary statement" I see it as a universal "We don't really know why".  Of course, the "...-NOS" I see most often in life (both real and on-line lives) is PDD-NOS i.e. Pervasive Developmental Disorder -Not Otherwise Specified. This is the fancy way to say "kinda-sorta-not-really Autism" and is usually a big blow to the parent on the receiving end because the first glimmer of a thought is "oh no! A diagnosis!" followed immediately by "What the FUCK does that MEAN?" . And if this latter question gets verbalized in any comprehensible and socially acceptable form, the answer is unlikely to be very enlightening.  Because it is a catch-all diagnosis.  In the cutlery tray that is Autistic Spectrum Disorders, PDD-NOS is the long bit at the side where you put the potato peelers, corkscrew and funny-shaped serving spoon kids who don't quite neatly fit in with the knife, fork and spoon kids that are the Asperger's Syndrome, Autistic Disorder, CDD and Rhett's Disorder kids.

Of course "-NOS" is not only used in application to the Autistic Spectrum. It is all over the DSM and probably other diagnostic manuals too. It is one of the greatest cop-outs of the medical world. A fancy way to say "for unknown or unquantifiable reasons".  I really wish we could have used it in business. You know, back in the day when I was making recommendations about buying software or companies it would have been nice to slap a "Buy-NOS" or a "Pass-NOS" (or a "Run the other way FAST -NOS") recommendation on a proposal. It would have saved me a huge amount of time and resources to just tell Management what I knew in me gut to be correct. But I have learned that the medical world can get away with much shoddier work than the business world. That fact shocked me. It really did. But that is probably a whole 'nother post (NOS).

Many months ago, I was in a chatroom with a bunch of Autistic moms back when me medical troubles first started and we were talking and joking about what my eventual diagnosis might be. We figured that whatever it was: -even if it officially came back as One Sick Motherism. It would be Not Otherwise Specified. I think we eventually came up with Something-NOS. Fits. (pun intended)

So this week I had me physical and psychological examination for me SSDI claim. The psychologist was very nice and really listened to me. (OK that is her job, but she was good at it!). She said she wants to test me further but she did give me a diagnosis:

Cognitive Disorder -Not Otherwise Specified. Almost as unspecific as our chatroom diagnosis! Here is a definition that I pulled of of ..somewhere.

Cognitive Disorder NOS (not otherwise specified) is diagnosed when a patient has a syndrome of cognitive impairment that does not meet the criteria for delerium, dementia or amnestic disorders. They are often due to a specific medical condition and/or a pharmacological reaction.

Nice.

I do have more psych. testing scheduled so we will see what comes of all of this and if it boils down to anything more specific. I am not really surprised by the DX. I have known for awhile that me brain has been working below par. In a way, it is nice to finally have the validation, because I have mentioned the cognitive issues before to various doctors and been poo-pooed; told to get more sleep or eat better, reduce stress (what stress? I am home all day bored out of me mind!) or some other nonsense.

So at last someone agreed with me, which I guess is good, but they agreed that something is wrong -which is bad. And I almost felt sad about that but then I remembered a similar situation and a conversation I had with my friend AM a long time ago when I was moaning to her on the phone about Joe's diagnosis:  "I never should have had him evaluated" I said
"What do you mean?"
"well, now he is autistic"
What do you mean "now he's Autistic?"He hasn't changed, you know. He was always autistic. you just know about it now. So now you can do something about it, where you couldn't before."

She was right then and she is still right.

Humming...

I caught myself humming merrily as I pottered today.  Humming!

I haven't hummed in ages!  I must have been happy. I briefly wondered if I had lost my mind (which is unfortunately the first thought of someone like me who has been so browbeat by so-called professionals). So I stopped to take inventory:  I wasn't  engaged in any manic or dangerous behaviours . No online cruising for rabid men. No  extreme shopping. I didn't call every phone number in my old highschool address book.  Nothing remotely psychotic (unless cleaning counts!)  I was just ... Happy!  I stood back for a futher analysis and I realized what was the issue:  Nothing really hurt.  My hips, hands and feet were not sore. My brain did not feel like there was a brick in it and my vision was fine.  No dizziness, either. I felt almost normal.   That is a reason to be happy in my book.

So of course, I then went and ruined it by starting a new med: Topamax.  It is a tiny dose.  Mouse-sized, really, but I have such a history of bad reactions that #25 and I wanted to be safe. OK. Me moreso than #25. This is only his second medication attempt with me. He is green yet. Once the calls start coming from the ER he won't be so laissez faire.

The first warning sign was one of the usual ones: my right foot went numb. But I ate lunch and was fine: No seizure. So far, so good. I continued pottering and cleaning.  Then around four, I felt dizzy and ...not good. I went to lay down and I had a mild seizure sometime later. (and I could hear George outside the door, scrabbling, "MrrrurrOW").  It didn't last long or wasn't severe or anything, but it as a seizure outside of my normal pattern, which I don't think is good. I like having a pattern. It gives me at least the illusion of control. And I'll take an illusion of control over being out of control any day. 

The ...different thing I noticed most before during and after the fit was the weird sensation in my hands and feet -even on the left side. They felt electric and not quite tingling... I tried to think of the word and then I got it:

Humming...  They were humming.

Maybe they were happy. 

I wasn't.

Deja Vu All Over Again

Well, I saw #25 again today.  He was interested in the fact that the diet is helping but does not seem curious as to *why*.  His proposed solution is that I eat nothing but meat for the rest of me life, which is not really acceptable to me from health, lifestyle or cost perspectives.  Plus there is the whole risk of massive rebound seizures should I break me diet. That happened before, and I was hospitalized for over a week, so I am not exaggerating on that last point.

I had asked #25 to research a very rare thing I had discovered through one of my readers here, but the bugger never looked it up...

<sigh>

So we are going to try Topamax, which will cover the possibility of either migraine or epilepsy.  I am rather scared at the prospect of starting a new AED. I have have very bad reactions to them in the past. But what am I going to do?  I have to try something.

There was also talk (again) about trying to set up some kind of experiment where we hook me up to both an EEG AND a tilt-table at the same time and try to trigger an attack.  I am up for that, if that is what it takes.  I am curious to see what my health insurance company will make of it.

The reason all this is deja vu-ish is that I felt that the conversations we had today were all the same conversations we had had back in November when I first started seeing #25.  I don't know if this means we had veered off-course and are now back on track; if we have just veered off-track; or if we are going around in circles.

Fourth Time's The Charm?

...and it's not doctors I am talking about this time. I'm talking about books. That I write.  Because I have always been a closet (and frustrated) writer.  I wrote about three-quarters of a book several years ago. Then I wrote a children's book. Then I started a (different) childrens' series.   Nothing came of any of them. Partly because I didn't finish and mainly because I couldn't bring myself to peddle me wares.

I had kind-of hoped that this illness of mine and the enforced time at home would allow me to actually finish a book.  However, my brain had other ideas. It could not hold a plot and series of characters together if life depended thereon. I couldn't write!  I suppose I couldn't "create" if you want to get Orty and fanciful about it.

I think -looking back at how relatively well my brain has been functioning since I started this mental diet a few weeks ago- it was because my brain was literally being fried by its own electricity.

The poor fucker didn't stand a chance of creating anything under those conditions.

I mentioned that I had breakfast with a good friend a few weeks ago here.  Well, during that meal she looked me straight in the eye, smiled mischievously and asked "When is the book coming?". I had no answer for her. With the exception of this blog -which will hardly win any literary awards, I have not been able to string two decent words together for months.

There was a time when words came so fast and so easily that it was hard for my crappy typing skills to keep up. I used to wash dishes and fold laundry with words swirling around my head, composing paragraphs and chapters as I did mundane shit. I used to scrawl ideas, plots and lines on my palmpilot, little notebooks and random pieces of paper that I found. None of that hast happened in a long time. There was just no creative impulses left in my head.  The words were gone.

Until today.  Today I started me new book. OK. I only wrote a page and a line. But I started it! (Hurray!).  The words started to come as I wrestled to clean an eggy breakfast plate.  I think I practically tore a hole in the glaze, composing in my head, half afraid to put the plate down in case the words left me again.

The Numbering System May Need to Change

Now, as people who follow this blog know, I have a relatively simple numbering system for the specialists I have seen in relation to my as-yet-undiagnosed neurological condition. The very first doctor is #1, and the latest one is #26. I only included doctors who were specifically sought and consulted about these symptoms. I left out a few I happened across along the way. For example the orthopedist I consulted when I hurt my knee in a fall, -even though he was the first doctor to ever mention Ehlers-Danlos Syndrome to me: "Good grief! That shouldn't do that! Do you have Ehlers-Danlos Syndrome?" (haha). I left him out of the numbering system because he hadn't been specifically consulted about neuro symptoms (although I think they caused the fall in the first place) . I also left out the doctor from my work who told me she thought it was "ocular migraines" and then sent me home with Prilosec (a stomach medicine!). That was a simple oversight on my part and by the time I remembered her (I must have blocked her out!), I would have had to re-number a lot of people who followed, including #25, so I just left her out, even though it is a classic example of the kind if shit I get handed whenever I see a new doctor about my condition.

I refused to count the ER docs and various attendings, residents, interns, students, NPs, urgent care center docs and other sundry people who have variously tried (and failed) to treat me over the past couple of years.  Even though there are some juicy stories there, and a few characters who pop up all over the place, It would have gotten too complicated, too quickly.

So I kept it to specialists that I had specifically consulted. Simple  ...ish.

However, Back when I started that journey, I never thought to account for my disability insurance people and the Government. In the past couple of weeks I have been Summoned  to doctors' appointments by both of these parties. The disability management people want me to attend an all-day neuropsychological evaluation, presumably to rule in (or out) if I am crazy. And my Uncle Sam has scheduled me for a physical and psychological evaluation, presumably to verify that I can't actually work as I claim.

Now both of these are fine. These organizations are spending money (or planning to) to support me through my disability and it is only fair that they verify this using doctors of their choice. My good friend Vicks, did offer to help out. "I could have told them for free that you are nuts.  Mind you, I would also have told them that you have been nuts for years, but the seizures are a new thing, so they can't be because you are nuts. They have to be something physiological".   You can't really argue with logic like hers, although you can (and I have)  ask yourself why I have stayed friends with her for so many years?  But she answered that already. Because I am nuts!  It all fits in a very Vicks sort of way.

However, now that these new third-party-imposed docs have been thrown into the mix, my doctor numbering system, which I worked on for... -maybe ten minutes- has been knocked out of whack. I guess I could keep it simple and call these new doctors #27, #28  and #29.  However they don't quite fit in with the system in that I didn't choose them, and I don't know if they will be just one-time deals or if I will be required to check back with them on a regular basis.

And the other factor is all the doctors who drop off the list. The ones who just shake their heads and say they cannot help me. The latest additions to the "out of ideas" club are #6 (no shock there) and my endocrinologist, who I think was #10 or #11 (the list is on my other PC). 

I was quite disappointed in the endo, to be honest.  I had high hopes for the guy. He seemed to be an independent, out-of-the-box thinker who  genuinely wanted to help me.  Also, as I *know* there is a strong metabolic component to this whole puzzle, I was hoping this guy -who specializes n diabetes and other metabolic disorders, would be able to piece it together for me.  If not him, then who?

He can't. He tried. Last week -after just over two years, He gave that sad-smile and headshake combination I have come to recognize as he international medical symbol for "I give up"

And so I got home disappointed, but not beaten and I stepped back and took a little headcount of the doctors who are still on-board with actually trying to help me:

1. My PCP
2. #25
3. #26 (AKA Dye Guy, who I think is about to exhaust his last idea. He only lasted a few months!)
4. My neurosurgeon

Four. Yes. I still see other docs for other stuff. But the rheumatologist or the cardiologist can't help with seizures. So I am down to those four. And the options seem to be narrowing.

Except for the three (or more?) doctors who have been imposed on me by third parties, of course. And honestly -although I would love to think these guys may be interested in helping me, I don't hold out any hope for that.

I guess for now, I will leave the original numbering system intact. I am going to number  the docs my private insurance company sends me to see as A1... through whatever.  The government sponsored ones will be US1-whatever.

Confused yet? Yeah. Join the club.