The week before last, I tried to get a referral to get IVIG, which is for auto-immune diseases, and used in my case because it can pass the blood/brain barrier, and kill my OWN auto-immune system that is (believed) to be attacking and destroying parts of my brain.
The person who owned the clinic, who I explained the whole disease to, and who said he liked a “Challenge” and took me on as a patient responded that he could not get me a specialists referral ‘until he has read the case file’. I pointed out that it had already been two months and when WOULD he read the case file? He said he didn’t know but that (insert chilling music) “maybe this isn’t the place for you.” (oh how many times have I heard GP’s say that. He went on to explain that I need a GP who would take responsibility of my case (which we pointed out, that after a full explanation he DID – no, no, he said, he merely ‘transferred my documentation’ instead of taking responsibility of me as a patient).
LAST week, I needed a refill and used another walk-in where there was no patients, it being a beautiful day and a Sunday. The doctor there, Dr. M. was cheerful, and so, with no patients waiting I asked him, “How DO I get IVIG?” After telling him a bit about it. He said that I ask him and he gives me a referral, and he got out a sheet and made me a referral to a hematologist; I told the GP that I also had progressive Anemia and would need to see the hematologist for that also.
Linda and I virtually danced as we celebrated getting finally ONE of the many, many specialists we wanted, and we even got the one we asked for, Dr. H. (who we heard was very good). I however did not post the info on the blog but told a couple people by email. Just before leaving on Tuesday, we were called by the clinic which said, “The doctor needs more information regarding your referral.”
We came directly from up island, from vacation, and on Friday afternoon waited in the same office. I was confused. Linda said, “They wouldn’t call us in if there wasn’t a problem.”
We were brought into the room and soon one of the most angry doctors (a different doctor than last week) I had seen came in. I knew him as I had asked him to BE my GP. I did that when I saw him do a stick test for a UTI, and then send off the rest of urine for testing (what, actual science in medicine?) instead of the standard practice in Victoria of giving a prescription without a test. He said no, it wasn’t his thing, he didn’t want that and I was a complicated case. (Complicated case, I was to hear a lot of that, I heard a lot from my supposed GP when I was told I wasn’t his patient, because I need ANOTHER GP, due to my ‘complicated case’).
On this day I was meek and mild as Linda can testify, I did not raise my voice, use sarcasm or even question the doctor, I just wanted my IVIG! I wrote up this account immediately after coming home while we were both either crying or trying not to cry and Linda was wandering from room to room.
Enter Doctor in strong South Afrikaner accent : What is this about anyway? This case is too complex! This is a walk in clinic!
Elizabeth: I have a referral to get IVIG treatment and I wanted to know how to get it; Dr. M said a hematologist would administer it.
D: Peers at the letter, “Blah blah, MSA better served by a neurologist….” No, no, he won’t see you!
E: Taking out the reports on Progressive Anemia over now almost two years, “Yes, but we were also seeing him for…..”
D: (With force) He is NOT going to see you under ANY condition!
(pause) Linda and I look at each other.
D: This needs to be administer by a neurologist I guess, why don’t you go back to this Dr. A.-P.?
E: She recused herself.
D: Different Neurologists will have different opinions, so why isn’t this neurologist doing it, because you wanted something else?
E: No, she, Dr. M, ordered it done. The doctor who ordered it was the mentor of Dr..P and the case was referred upwards to her.
D: Well, just because He was a mentor means nothing, so you aren’t seeing any neurologists?
Linda: We are seeing Dr. PT…
D: (cuts her off and stares at me, speaking aggressively) “Well if you going to go shopping around for opinions, this is a walk in, you need a GP to handle this (Again, I think I am the only female in a wheelchair in the area to USE this clinic and I had the previous year asked him to BE my GP), this is complicated and someone needs to take responsibility. And here you are seeing all these different Neurologists. (this was said as if I was trying to commit a crime)
E: No, I am only seeing Dr. PT because he is a seizure specialist. All he does is seizures.
D: But he is a neurologist. Why can’t HE do the IVIG?
E: Because he said he will ONLY do seizures, and has sent me for EEG’s, only seizures.
D: Peers at form from Vancouver Hospital, “So who is this Dr. Sl? What did he say.” (the letter was CC to the movement disorder and the Genetics clinic)
L: “After the test he wrote to say we weren’t within his ‘parameters’ and so he wouldn’t be seeing us.”
E: Was he movement or DNA
L: DNA I think.
D: Well you need someone to assess you from the beginning.
E: (stares in horror…..’from the beginning?’)
D: Well you should have a family doctor. Who is this Dr. Jimmy
L: When earlier, no GP would take Elizabeth due to her complicated case, he was the doctor at Cool Aid who took her.
D: So why doesn’t HE do it.
L: He decided the case was too complicated.
D: (Looking at me) So who is your GP now, there is no point putting this on walk-ins, you need to find a real GP.
E: I have TRIED to get a family doctor, and have one, but it turned out that was a walk in clinic as well.
D: Well you need to find one, this is too complex. (Pause) You need to go back to back to Dr. A-P! (Slight pause) “If you try to argue in the slightest, I will not send off this referral at all!”
E: thinks of the Internist, who I waited 40 minutes after the blood work to be told, “You are fine, I can’t help you.” I was ushered out. I asked the administrator, “Um, I came down here, can I at least ask him a question?”
Adminstrator harshly: You have been told the findings, HE is a very busy man. (I was later diagnosed with hypo-thyroidism from the same test results).
E thinks of being at the counter to see Dr. A.-P. when the administrator says, “No, you can’t see T., you are BANNED from seeing him.” (he diagnosed me with MSA, she said I had nothing, it caused some office tension).
E: I’m not seeing him, yet.
Administrator: Well, your doctor needs to write a letter requesting a referral to see him, then I can respond! (???)
E: (having nightmares of the 18 months to see a neurologist, get referred to BACK up to Dr. M. who ordered the IVIG and would go, “I gave you the treatment protocol, why are you here?”)
E: (LONG PAUSE in office) I did go back to see Dr A-P after that letter.
E: Dr. A-P does not want to give this treatment.
D: You are certain.
E: Yes, she does not want to give this treatment. She did offer the tilt table, but I specifically asked if that would lead to treatment and she said no. She made that quite clear. Linda can confirm that.
D: Well, you go HERE and you go THERE, and I don’t think you are going to find ANY treatment or anyone who will treat you or take responsibility for IVIG in this town.
I feel as if I have just been hit by a car. Is this town that small, that no one can do IVIG treatment, or that the system only goes in circles.
Dr. continues: “No one in this city will take responsibility for IVIG, you will need to move to VANCOUVER if YOU want to get IVIG.”
E: “To get IVIG, I would go to Vancouver.”
D: “You would?”
E: “Yes. For IVIG.”
D: “Well, I’ll make this referral but, I don’t hope much……..(looking at paper) there are too many neurologist involved.”
D Takes the letter, tells the receptionists to send our originals we obtained by the freedom of information act from the Vancouver Hospital Clinic and to give them to the specialist. When he is gone as the administrator makes the copies, I ask for the originals back. “No problem” and we have them back. Never take originals into a doctors office, I remind myself.
A little later we talk:
Linda’s statement about the visit:
He took away all hope.
He took away all hope that we will get treatment in this city.
E says to L: He blamed me entirely!
L: Yes he did.
E: What did I do? Why blame me? Why get angry at me?
L: You don’t have a GP.
E: I tried, I have been refused now, what 28, 29 times, I even asked him!
L: He blamed you, it wasn’t fair, it makes everything uphill, it is acted as if it is all your fault.
Currently we don’t know if we got the Neurologist referral, or if like the Rhumatologist referral, we get the referral only to be accessed for arthritis, as the specialist only does arthritis. We don’t know if anyone in this city will take responsibility for treatment which is authorized to be done anywhere in this province.
I cannot go to the US, the treatment costs $18,000 (according to Dr. A-P). Dr. M. who authorized the treatment for six months as a baseline then continue with that or switch to a different drug depending on the results won’t sign a paper saying that it is impossible to get this treatment in Canada. Nor will she administer it. Nor would the neurologist she gave it to administer it. Or the one who treats seizures (but hasn’t seen me since……uh….dunno, a LONG TIME). Nor will any GP. No one will take responsibility for something that Dr. M has ALREADY taken responsibility for.
I now believe, that I will not be able to get a GP, have the strength to interview those GP’s to find one, have them review the case. Get an neurologist, a hematologist, a respirologist, a gastrointerologist (sic) and a few more. Have the tilt table test done to make a base line of autonomic failure. Then have the IVIG set up. It COULD be done in a week or two. But for the time to see a nuerologist, it is more likely if EVERYTHING went well, it would take 18 to 24 months. At the fastest, maybe five to six months for the neurologist instead of nine to eleven, one month (a miracle) for the tilt table, then another month for setting up the IVIG. It would be seven to eight months at a miracle. Or if I get hit by a car WITH my medical chart on me, maybe they would treat me at the hospital. However, they labelled the anemia and acute and needed immediate treatment and didn’t treat that!
So no, I don’t think I will live to see the treatment which may extend my quality of life. Nor, without the specialist, will I have palliative or even adequate pain medication. As Cheryl said, if they treated the thyroid, the anemia, and the auto-immune disease, then it isn’t so complicated anymore.
He took away all hope....that I can live, or live longer. Welcome back to Victoria.
8 hours ago