Friday, July 18, 2008

The Doctor is in, but I am OUT

I need to keep this short so the good news is that the MRI is a dud. They looked at T-1 to T4 and after the chief radiologist came down and they did it again they decided that the signal increase in that section was no longer evident. There were however significant “artifacts” which have no explanation. It turns out that no more of the spine or head was MRI’d and that is NOT why I found out today that I am going to the Rheumatologist. Though the doctor has intervened and got my appointment moved up from December to September. Also, he is speaking individually with the pain specialist so I can get in there quickly as well.

So what is the deal? That is what we asked ourselves while we were in his office. The lab results were back, the neurology report was read again and I explained, in detail how in SCIENCE there are baselines and objective reasoning. And proof! And if we look at nerve destruction as starting at 0, minimum at 1, medium at 3 (mild to medium as 2), severe as 5 and non-function at 6/7. Then to go in one year from 0 to 4/5 and write that in a letter. To write that I have autonomic failure (believed peripheral), and that I have also an auto-immune disease which MIGHT be the cause of one or two of these problems should be accompanied by a list of diseases which can produce such results. Since as a scientist I found it hard to believe, which this neurologist states that I am now at level 4/5 nerve destruction but non-degenerative. That I am supposed to believe that THE VERY DAY I was tested, whatever was destroying my nerves (still unknown) decided to stop.

The Doctor couldn’t understand that. So I said to him, “This woman, told me that she did a Nerve Conduction Test, a scientific test, which showed that I will NEVER walk again unaided, never eat food normally, never write normally again. And without any EVIDENCE says I shouldn’t worry this happened in a year, that it won’t continue and she will see me maybe in six months. Would YOU worry doctor? Would you?”

He didn’t know what to say except that she was doing her “due diligence” in ordering tests to rule out possible causes. He turned and said, “Like, you tested negative for Syphilis.”

I was ALMOST speechless, “Syphilis! Syphilis? This doctor says I have a NON-degenerative disease and tests me for SYPHILIS! (Syphilis until recent medicines degenerated the brain to death).”

It turns out that not only are the four indicators from the LAST bloodwork on Anemia are worse. There is even a little graph over time. I am now at the “Critical Level” for all women (that means I would be anemic if I was 5’3”, instead of over 6’3”). That level just isn’t for my hemoglobin (the pigment that makes blood red and helps it carry oxygen), and hematocrit levels (how many red blood cells in a given area) but also two other critical indicators. But the doctor does nothing. I ask about the B-12 and it has shot up, not in the 160 but up at 250+; the folic acid is fine, the iron is fine.

He asks very specific questions to Cheryl about the seizures. But doesn’t seem to notice that a) I am about to pass out and b) I am about to burst into tears due to frustration. Cheryl and Linda both independently say this Doctor seems a little dense in terms of observation. Even with Cheryl he was only interested in certain phrases, then once he found I didn’t pee myself….not interested. Said that they eye pointing down while the other stared out sounds like the nerves on one part of the face were paralyzed. But that is it, no follow up. Later that day, I am contacted by the duty nurse for VIHA; E. the nurse who said, “Why should I care?” about the seizures wasn’t there, this is the EVENING nurse. She is very concerned. She is changing my care plan. She wants me to put up a protocol chart by my computer on how to keep airway clear and other common practice for workers while she will forward the report to my GP and get my care workers to have further information and maybe training. The surreal nature of the difference between two nurses is striking. This nurse, K., wants to know why my doctor didn’t give me Dilantin to help stop the 3 grand mals and 5-10 other seizures I have a week. I told her I would ask him that, but maybe she could suggest it too. (My GP actually prescribe me something….forbid!).

My GP seems frustrated because all I keep bringing him are big problems, these seizures now, plus an autoimmune disease, plus autonomic failure, plus nerve damage/failure, AND pain. But for some reason he believes the pain and is talking to the guy to get the first available placement. Why? Linda and I can’t figure it out, we think maybe this way he doesn’t have to be responsible. He is VERY up on going to an independent neurologist in the states. By why the hurry? He is acting like, since there is no CONCRETE evidence, why shouldn’t I just get up and walk (except the othastatic hypotention), and stop taking oxygen and all pain meds. Except I did just that a couple days before and my 5 minutes of, “Hey look I’m better” cost me 4-5 hours of seizures, pain, nausea, and a day of fatigue.

I tell Cheryl a few hours after when I can only feel like killing myself that I feel stuck between two worlds; both which I cannot live in. The last time I lived mentally in the world of doctors, seeing what they want, and only looking at me 20 minutes every month or two, telling Linda that seeing my arm blue and fingers black isn’t “objective evidence”. The last time I stopped all my meds and Linda had and my night care worker had to hold me down with a towel in my mouth that evening while I screamed and screamed in pain. My GP, says he can’t see any change in my condition when EVERYONE around me, even people who just look at pictures on my blog can SEE a change, even while I am still trying to exercise three or four days a week. The medical establishment is ALMOST ready to accept that something might be wrong, and the results warrant further investigation. I can’t live there but I have no desire to run back to the “Oh great, I’m degenerating and dying, and I WILL die, because even going to the hospital and getting heart and seizure treatment there isn’t replicated at the GP or specialist level (the hospital is ignored, or worse insulted as “not ACTUALLY specialists). Having it documented in hospital means nothing if you can’t Grand Mal AND pee yourself for the GP in that 10 minutes. How do I fight that? How do I fight the GP who GOT the hospital report on partial stroke and seizures and CANCELLED a head MRI? They have a whole spine and head and like an architect who decides to look at one pillar while half the building is collapsing goes, “I don’t see anything here!”

Anyway, that is all mute because we now know WHY I am seeing the pain specialist and Rheumatologist so quickly. This is what the Canadian Blood Service says about Hemoglobin and anemia: it takes 56 days to renew the full blood. This is in case of trauma and severe blood loss, but in that case my levels would be going up…not down. Likely causes: low B-12 (fine), low iron (fine), low folic acid (fine). Less fun causes: internal bleeding (none of that level, Cheryl has been checking the last few months), and celiac disease (tested in this last batch – came back negative, again), extra heavy periods (nope). “Serious medical problems are more likely in individuals with lower hemoglobin levels.”

Okay, now we get to the fun stuff (Mednet): reaction from Chemotherapy (nope), reaction from prolonged exposure to radiation (nope), trauma (nope). Bleeding colon cancer (nope). The two which are left as ‘common’ with are consistent with the hemocrit levels are some form of bone marrow cancer and the dying of the kidneys.

By the time I got to here, I was feeling a gut punch and thinking, “Wow, I REALLY wish I had come back positive for Celiac disease.” Linda called and I read her what I had found. She faxed the lab to get all the results. Maybe tomorrow. You may ask, Why didn’t I look up this stuff when I was first anemic? I didn’t want to know. I was tired. But I couldn’t understand my GP GRAPHING my decline in each area of anemia but not treating me. WHY? DOCTORS TREAT PEOPLE, WHY ISN’T HE TREATING ME!

Because if he can’t give me iron, or B-12 or any other tests, there isn’t a “magic pill” which will make the anemia go away. Yeah, the thyroid is dying, or dead, and maybe the adrenal gland. And I have an auto-immune disease, vascular degeneration control, autonomic failure, TIA’s, seizures, and strokes, my intestines don’t work, nor my BP, or oxygen conversion. We are trying to buy a machine for $5000 to keep blood with oxygen going to my HEAD (blue fingers okay as long as the LIPS turn back to pink). And now, he has this wonderful graph evidence that something is horridly fucked up in me; cancer, dying kidneys, something affecting my bone marrow AND cell production or kidney secretion, or all three or who knows. So he is getting me pain meds and getting me a specialist in less than two months, in a city that only has two. That’s what he can do. Last time they checked my white blood cells were okay. I dunno when that was. Should I be hoping a wack disease comes up positive than we keep going further into this horrid body jungle of dying WHILE alive?

I guess I can see why my GP is overwhelmed. What IS working on me? I think my pancreas is still okay! And hey, that T-1 to T-4 is sort of clear except for a number of artifacts. Cheryl, cheerful Cheryl thinks that might be lesions. I think if they did a full brain and spine MRI they would have found a whole worm farm. But do I have six months to wait for another referral?

Anyway, maybe I will be lucky and start vomiting blood tomorrow and not worry about this anymore?! (see, that would actually explain this type of anemia, if I did that regualarly!). Oh, and the kicker, apparently, my levels have put me too unstable to recover from surgery. Not that they are offering yet.

Um, the good news is…I have friends, I have today. What will be worse; this period of unknowing or the tests and the news ahead? I am off for a BBQ. I very wish I had some super news to give. Honestly, I though anemia was studying too much, or me being 16 and a pouty goth all over again. I just didn’t know why he didn’t give me iron pills or whatever.

Give me a day or so to get used to it. I kind of thought that what I had already was, well, enough.


Lisa Harney said...

Not trying to extend a false hope here, but I've found that the list of possible causes for some symptoms can be less than complete - sometimes less scary things somehow get left off the list. No idea if it's applicable here, and I can't find anything right now that you didn't mention.

Of course, I discovered that when I was obsessively tracking down symptoms.

Anyway, I hope the anemia doesn't turn out to be a sign of cancer or kidney failure. I also hope your GP pulls his head the rest of the way out of his ass. :(

Sympathies on another exciting doctor day.

Carapace said...

May I be very American here and ask why you haven't put massive legal proceedings in motion? Is there some weird quirk of the Canadian legal or medical system that makes it inadvisable to sue a doctor who has not done MRIs on a person with clear neurological problems, does not prescribe seizures meds to a person WITH SEIZURES, and hey-! may have managed to ignore cancer?
Gad, really at this point I'd be happy to bypass the American stereotypical action in favor of the Texan stereotype, and just wreak some pointless violence on people.
On side? I guess? if it IS cancer, there are at least known courses of treatment.
Also, you may want to ask...whoever will give you pills about taking Verapamil. It's what I'm on for the head stuff, and it's a blood pressure med too.The head stuff is slightly off label, so it's one of those things a lot of doctors won't suggest. Not sure if it's for you, we've got very different health, but you could ask.

SharonMV said...

Dear Beth,

I know some of the frustration & fear you are dealing with. Just today, I was thinking - maybe it's time to get my WBC checked again, maybe I do have leukemia. Or maybe it's just an infection in one of my joints - an idea the rheumatologist scoffs at. And I still have to find an endocrinologist to deal with my adrenal problems. And I need to get my thyroid checked again as I think my synthroid levels need adjusting. Not to mention the Lupus flare that never stops & that despite treatment for my CVID (immune deficiency), I've come down with yet another sinus/respiratory infection. But when I saw the ENT last week to get a culture (so my internist could presribe some targeted IV antibiotics), he said i didn't need a culture (time for a new ENT). Maybe, I'm not getting better - the thought crosses my mind - maybe there is some other system failing that I don't yet know about. It doesn't help that the Lupus flare/infection combo always messes with my mood & thought processes, making these worries & anxieties worse.

All this is in preface to saying, that I can't imagine the frustration, fear & anger you must go through. At least I have a couple of good doctors (one very good) and I'm getting meds & treatments for my illnesses. And my symptoms are not as severe and disabling as yours nor as frightening. I'm sorry that you've got this anemia to face now, but at least the GP is now doing something about it. And having your pain managed better will help. I wish you could get some treatment for the seizures. Maybe if you just camped out at the GP's office until you had a seizure for him to witness, he'd do something. But he's probably have to discount his own observation since he's not a specialist.

Please don't think about all the worst things it could be - or try to minimize the time you spend thinking about it. Enjoy the day, the BarBQ and your friends.


desdemona said...

"Bleeding colon cancer (nope)"

Have you had a colonoscopy? (yeah, I know, just the thought makes me go noooooooooooooo) but you did write about passing blood clots instead of "regular" poop....
You know, how much worse can it get and maybe there is treatment?

Anna said...

I have no words. No evidence/facts????? I thought they would hook (right word?)you up to machines 24/7 and monitor your body to see what happens inside.

There really should be a doctor House in every city, there really should.

Neil said...

Hi: Sorry about the plot spoiler. But I assumed that we were the last people on Earth to have heard about/seen Blood Ties.

The doctors are idiots. Do they think that if you truly believe them, you'll be able to walk again?

Yes, you have friends. Barbeques are good, online friends acceptable.

But I wish I could give you hugs in person.

Gaina said...

Well, I didn't understand any of that so god knows how you must feel!

Can't he answer a simple question like, 'What did you find on my MRI'? What's an 'artefact'?

Theodora said...

It's a very good thing your pancreas is still working! You would not like diabetes with your trypanophobia and the failure and subsequent cancellation of Pfizer's inhaled insulin project.

I am on MDI (multiple daily injection therapy) and I go through a box of a hundred syringes every two weeks, in fact I have a flowerpot full of used ones under the sink... but even with the pump, there are needles.

So let's hope your pancreas keeps chugging along!

Lene Andersen said...

Oh, for FUCK'S SAKE!!!

Meredith said...

Oh. My. Goddess. Your GP is a bastard. Seriously! I had a similar one when I was 3 - wanted to cut me up in the stomach while my EARS were inflamed! And nearly everyone I know reports their doctor seems to be like that or worse - psych ward a LOT worse. Gah.

Well. I hope SOMEONE will finally find what's going on with you, and at least stops it. We wanna read you for a long time, right? :-)
(Fiction is always better than reality: House'd fix you in a week to the level of running :-/)

I loled at te "extra heavy periods" part - I experienced that one and my blood results prett much looked like yours. Luckily that lasted for the first 2 years of my "woman life"... extra painful AND extra bloody, lasting for almost a week. Then I was given a bunch of bad-tasting things and was made some sort of weird exercise and it took 4 months but now it's kinda normal. *sigh*

Perpetual Beginner said...

Reading this feels like what talking to my MIL felt like when she was sick. She was bounced from specialist to specialist, with weeks or months in between appointments, because nobody wanted to treat until they had a diagnosis. They refused to deal with what was sitting there in front of them (tiny woman, dropping weight drastically and continually, with massive digestive/intestinal symptoms). She saw her GP, a gastrointestinal surgeon, an oncologist, a hemotologist and so on and so forth. Any one of these people could probably have treated her sufficiently to give her relief if they had stopped hunting for the diagnosis long enough to actually treat symptoms. Instead they just kept bouncing her around without treatment (scolding her all the way about not eating enough), right up until she died, three days before she was supposed to go back to the oncologist.

I'm still pissed about it.

cheryl g said...

Not impressed with your GP all that much now that I've met him. These doctors need to get over the fixation on whether you pee yourself while having a seizure.

I can't believe that I am actually wishing you were bleeding internally at the moment so we had a "good" explanation for the anemia.

spinningtransformation said...

he didn't even prescribe iron? WHAT THE FUCK IS WRONG WITH THIS MAN?????

sorry - that probably wasn't helpful. I just don't know what else to say...

Do you have a date for a rheumy appt? who are you seeing now?

shit... Christina

yanub said...

Fire him. No, no, no, don't tell me about how you will have to start all over. You take your records with you, and you won't be starting all over. In any case, better to start all over with a doctor who didn't graduate in the bottom quintile of his class than stay with this guy who got his degree free with six box tops and a SASE. You fire him, you still have your pain specialist appointment. Staying with him is just enabling his abuse of you to continue. And he is abusing you. Don't let him continue.

FridaWrites said...

Oof, so sorry everyone is so incompetent. I can't understand why they feel they have to have TIAs and seizures replicated in front of them--it's incredible these doctors don't take one another's evidence.

In the US, you can get iron over the counter if that level's low.

In a bit of disbelief that they didn't do a brain MRI at least. That's not right. I hope the anemia improves soon so you have more energy and feel a little stronger.

sarah said...

wow, my head nearly exploded trying to comprehend all of this. and I'm still not sure I understand the Dx.

This may be a really lame comment that you've already dealt with, but does canada have independent living centers? I've had such a ridiculous time trying to get a new wheelchair that I called my local center for independent living to get one of their advocates on the case. they meet me at the appt. and help me get what I need. basically, they play bad cop so I can play good cop and stay in the good graces of all the gatekeepers (drs, etc). lately I take my father to my appts where I get hassle, again to play bad cop, but mostly just to be a big scary dude in the room, which does help.

i think i may have to make a flow chart of this last post to make sure i'm following.

em said...

Oh that feeling of being able to live in neither world. I'm reading you. I care. I'm grateful that the GP is finally getting off his ass and doing something for you.

Dawn Allenbach said...

I know nothing I can say will help, so . . .


JaneB said...

Hugs. at least your three days of doctor-world are over - hope you get a break soon! wish nice man at hospital who began treating one of your symptoms was a GP, eh?

rachelcreative said...

Utter utter crapiness.

[Insert long string of swear words here]

I too feel a niggle of concern over that congealed blood poop you blogged about a week or two ago. I hope you are being honest with yourself about the significance or not. I am sure you are.

I don't think you should feel at all bad for not chasing anemia yourself earlier. Doctors are supposed to be there to watch out for this stuff - even though this is clearly not happening.


I echo an earlier comment that answers are not simple on dx but that now it is time to treat the symptoms. You need the best quality of life available to you.

I am so sorry that you have to continue to fight for what is supposedly a basic human right in western society.

Veralidaine said...

Arrrgh. What a doctor roller-coaster! First he's helpful then he's not then he passes the buck and now potential cancer/kidney failure? What you have already IS more than enough for any THREE people!

I hope you get to Seattle to a real neuro soon. And thank goodness for small favors, like the doctor getting you an appointment with (YET ANOTHER) specialist.

But... I'm sure this has been said on your blog before... the problem with the medical profession is what they call the people who graduate at the bottom of their class in medical school.

They call them "Doctor."

Perpetual Beginner said...

No kidding, Veralidaine.

I took the MCATS back in 1995. They're in several sections with 20-30 minute breaks in-between, during which the testees would sit around chatting. I have rarely been more horrified. These supposedly bright students, all applying for med school, were having serious discussions about which letter they should fill in when they didn't know the answer. At one point about 3/4 of the group admitted to filling in said choice of random letter for the entire "dark matter" section in the hard science section because they didn't know anything about dark matter. Which would be fine, except the section opened up with a two page article on dark matter which contained all information needed! It wasn't even questioning science knowledge, just science reading comprehension.

One of my little recurrent nightmares is of going in for surgery someday and recognizing the surgeon from that room. There wasn't anybody in there I'd have trusted with a scalpel in their hands.

I scored well (96th percentile), but ended up being one slot too low on the wait list for the state school, largely because I wasn't a South Carolina native.

Elizabeth McClung said...

Thanks for your concern, sadly I can't drop the GP becuase.....he is the last one left, and better than the last 4. 25 other GP's have all turned me down as well as 3 or 4 accepting me then turfing me once they got my file. Because in socialized medicine they get paid the same for "complex disease" as for cold - and as one said, "I can have five people at least for the amount of time it would take to treat you"

The Iron IS sufficient, the blood from a month ago was not, and no GI bleeds, we have been checking. So....dunno.

I guess just focus on postcards and getting by and try not to think about it? I don't know!

abi said...

And this is the new, improved version of your doctor? Bugger.

Celiac would have been such a lovely diagnosis - so easy to treat. Have they removed bits of your intestine to check for damaged villi (microvilli?) yet? Apparently the blood test is not always accurate. Actually, tests for this are frequently no good unless there has been gluten in the diet recently, and often for 6 weeks in reasonable amounts. Sorry - will drop this now - I'm not being helpful at all.

I take it they didn't find any aliens on the MRI. Is this why they have to re-do it? Or is an 'artefact' code for an alien? Does he need government clearance to let you know your MRI results? The plot thickens. Which is not helpful. Again (but it was the plot being unhelpful that time, not me. I was being very helpful indeed with my inductive reasoning).

I hope tomorrow (today?) is more helpful.

Heather said...

Well damn. There goes my hope that you were growing an alien.

And given your whole bowel situation I'm thinking more iron (which can constipate) when your iron levels are okayish would be no fun at all. (No I can't quite believe I am talking about your bowels.)

And hurrah for a sensible night nurse: maybe someone in the Kremlin (aka the VIHA) would leak her work schedule so you could talk to someone sensible from time to time.

Anyhoo: I hope the BBQ goes well and fun is had. And then some rest. You know, REST. So there can be more adventures.

Elizabeth McClung said...

Hi everyone,

Linda here...

Just wanted to let you know we're visiting Cheryl tonight so you may not get a blog.

Probably tomorrow though...

Have a great weekend all.

Dawn Allenbach said...

I think you need to mention the massive blood clot coming out of your rectum. I really believe that could be it. I know, I know -- a colonoscopy gives me the shivers, too, but my dad says they give you happy happy drugs so you don't remember.

Seriously -- 'fess up about the clots.

A Bear in the Woods said...

Hi Elizabeth,
I hate the feeling of not being heard, and of being negated.
I'm reading, and I'm hearing you. I wish I could do more, but I want to be with you for this trip.

Lisa Harney said...

You three have a great weekend too. :)

Elizabeth McClung said...

Thank you for all the comments, I will need to spend time doing the comments coming back tomorrow. But I DID do a short post today (HA, take that Linda!). Cheers all.

SharonMV said...

Hi Beth,
I wanted to mention that anemia can be caused by autoimmune diseases. It often occurs in Lupus. I had mild anemia. In my case it turned out to be iron deficiency anemia. But other types of anemia (like hemolytic) anemia can occur in Lupus and other autoimmune diseases. Or it could be idiopathic autoimmune anemia. These are not as easy to treat as iron deficient or pernicious (lacking B12) anemia, but they are treatable. It's probably more expensive to treat them and to investigate to find a cause. I wonder if that's why your GP waited till you got to this magic number before your allowed treatment.

Also I was wondering if you get any treatment for your thyroid. Are you hypothyroid? If you are low,(or high). I hope the doc is treating that. I think low thyroid can be associated with anemia.

I read your post for tonight & am glad you are visiting Cheryl & the USA. Try to relax & rest amidst all the fun.