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.