Should I be mad/upset with my doctor???

[jillmb]

After my LP test came back negative, my neuro suggested that I have an MRA and also have a blood test to check for "Cadasil". He did not go into detail about what "Cadasil" was, just something to do with the blood vessels in your head. But, he did say it was a very expensive test, my insurance would most likely pay for it, but even if it didn't, he thinks it's a good idea to get it anyway.

So, not really thinking too much about it, it's just a blood test to check for something else, right? Wrong! Cadasil is a very serious disease that is so rare, just a few people in the world have been diagnosed with it. There is no cure or real treatment, and it produces TIA's or strokes and greatly affects your life and life span. WTF!?!? There are many symptoms of this, and the only one I have is the white matter shown on my MRI. Oh, and it's also a genetic disease and no one in my family has ever had this or anything like this.

So, you can imagine my surprise when I read this online. I almost had a heart attack thinking that he thinks I might have this, and why the heck didn't he tell me anything about it? I am really mad and upset that I had to read about it online, I had no idea what this test was for!

I'm also the type when I'm in the doctor's office I have few questions, but when I leave I think of a million things I should have asked him!

Anyway, sorry for venting, the more I think of it, I just get so mad! Oh, and they were supposed to check with my insurance to see if they'd cover the test which I heard is about $3,000. Of course they didn't call me yesterday like they said they would, so now I guess I have to wait till Tuesday because of the holiday. I do not have $3,000 to pay out of pocket, and even if they do cover it, I don't even know if I want to do it. I have no problem doing the MRA, and see what happens from there, but this blood test has made me really upset!

Thanks for listening :-)
Jill

[CasinoKathy]

Jill, I understand completely why your upset! The doctor should have explained the test to you. I know lots of times I also forget to ask questions.

Hopefully your ins will cover the test. You don't have to be sorry for venting, we're here to listen and offer support and a shoulder to cry on if need be.

Good luck and hope that test comes out negative!

[RoyaleMSer]

I don't understand what the big deal is. It sounds like he is ruling out EVERYTHING including CADASIL by having you take the test. He's just doing his job so there's nothing to freak out about.

[mjan]

Jill..seems you are having yet another "test" of patience and not to jump to conclusions right away ok hon?

Its just some docs like to think out loud and it can scare a person to death sometimes. AND you do not yet know the cost of this test. What is charged and what the contracted amt agreed upon by your insurance are two different things. AND then your part is yet another discounted amt which you can set up a payment plan. It CAN work out.

So.. again.. although I can understand your anxiety while you need to wait..use your faith..try, if you can, not to upset yourself but rather follow the Serenity prayer by asking..what IS under your control.. and what do you need to turn over, using your faith..trusting that there will be answer for you.

You know you always have us my dear~HUGS!!

Warmly, Jan

[onlyairfare]

I think if you want to know more about the test, you need to ask your doctor, as he or she is not a mind reader. Many of us write our questions down and bring "the list" with us to the doctor's office, as it is often difficult to remember everything on the spot. And no one can force you to have a test. If you would rather not know if you have CADASIL, then don't have the test done!

I would think it is a good sign that your doctor wants to be sure about all the possibilities that might cause your symptoms, and orders all the necessary tests. Doctors do not control what insurers cover either, and if the test requires "Prior Authorization" before the insurance company will agree to pay, then the doctor's office has to wait also - until the insurer "gets back to them" with a confirmation code.

I don't see what good it does to get angry with the doctor after you leave the office, about things you didn't ask him while you were there. And to get angry at your doctor who is trying to help you, trying to investigate all the possibilities, seems counter-productive to me.

It is anxiety provoking to have to deal with illness and uncertainty, but why not try to relax and enjoy the holiday weekend. There is nothing to gain by being upset, and Tuesday will roll around soon enough.

[jillmb]

Kathy

Kathy,

Thank you for your reply! I think I'm just mostly upset because I was completely blindsided by this and if he would have even explained it to me the slightest bit, I would have know what to expect online.

Trying to get over it!
Thanks, Jill

Jill, I understand completely why your upset! The doctor should have explained the test to you. I know lots of times I also forget to ask questions.

Hopefully your ins will cover the test. You don't have to be sorry for venting, we're here to listen and offer support and a shoulder to cry on if need be.

Good luck and hope that test comes out negative!

[jillmb]

Raegan

The big deal was that he didn't give me any idea at all what Cadasil was, and when I looked it up online, I freaked out! If you look it up you'll see what it is, and the thought that you might have it, would make you a bit upset too, I would imagine.

On the other hand, I am very grateful for a doctor that is looking into everything and not stopping till he and I have some answers. I know from other people that after a few tests and an unsure dx for MS, they were kind of blown off by their doctor and told to come back for another mri in 6 months. This is not how I would want to be treated and am thankful to have him be so proactive in trying to help me.

But, as I explained in the beginning, the way I found out on my own was just really awful for me to have to go through, and I felt like my doctor could have gone into at least some detail with me about something so serious.

Jill

I don't understand what the big deal is. It sounds like he is ruling out EVERYTHING including CADASIL by having you take the test. He's just doing his job so there's nothing to freak out about.

[jillmb]

Jan

Jan,

Thank you for your reply. You are always so supportive and helpful; I love reading posts from you!

Jill

Jill..seems you are having yet another "test" of patience and not to jump to conclusions right away ok hon?

Its just some docs like to think out loud and it can scare a person to death sometimes. AND you do not yet know the cost of this test. What is charged and what the contracted amt agreed upon by your insurance are two different things. AND then your part is yet another discounted amt which you can set up a payment plan. It CAN work out.

So.. again.. although I can understand your anxiety while you need to wait..use your faith..try, if you can, not to upset yourself but rather follow the Serenity prayer by asking..what IS under your control.. and what do you need to turn over, using your faith..trusting that there will be answer for you.

You know you always have us my dear~HUGS!!

Warmly, Jan

[jillmb]

onlyairfare

You are right and I think I might have overreacted the first couple of days because I was so upset. I am very thankful for my doctor who is trying to help me, I just wish he was a bit more forthcoming about this, and I didn't have to find out online. I think that's what made me so upset.

I understand about insurance companies and the time it takes to do anything. I was just expecting a call since she told me "I'll call you tomorrow with the info" and then no call. I'm sure she didn't hear from them and I will find out more on Tuesday or Wednesday. It's just hard going into a long holiday weekend with all of this on my mind!

Jill

I think if you want to know more about the test, you need to ask your doctor, as he or she is not a mind reader. Many of us write our questions down and bring "the list" with us to the doctor's office, as it is often difficult to remember everything on the spot. And no one can force you to have a test. If you would rather not know if you have CADASIL, then don't have the test done!

I would think it is a good sign that your doctor wants to be sure about all the possibilities that might cause your symptoms, and orders all the necessary tests. Doctors do not control what insurers cover either, and if the test requires "Prior Authorization" before the insurance company will agree to pay, then the doctor's office has to wait also - until the insurer "gets back to them" with a confirmation code.

I don't see what good it does to get angry with the doctor after you leave the office, about things you didn't ask him while you were there. And to get angry at your doctor who is trying to help you, trying to investigate all the possibilities, seems counter-productive to me.

It is anxiety provoking to have to deal with illness and uncertainty, but why not try to relax and enjoy the holiday weekend. There is nothing to gain by being upset, and Tuesday will roll around soon enough.

[Debba]

Jill,
I just had to respond to your post. I totally understand why you are upset. As I said previously, I just had the CADASIL test. My neuro told me "I want to test you for one more thing, it has to do with the blood vessels in your brain and it can be an expensive test. I don't think you have it, but I want to make sure". Because I want an answer to what is going on I said ok. He never even told me the name of the test.

So a week or so later, a little box arrives from Athena (the co. that does the test). When I was looking at the paperwork, I saw the name CADASIL. So of course I Googled it. I was absolutely horrified. I was so scared and mad, just like you. Like I said before, it makes you realize there are worse things that could happen than MS.

Then, 2 weeks later I get the call about the cost of the test, and it makes me mad all over again! Luckily a call to my insurance made that all better.

Sorry this is so long, I just wanted you to know that I totally understand where you are coming from. I was shocked, mad and scared when I found out what the test was. Looking at it now that I am negative for CADASIL, I think the dr. might not have wanted to alarm me by throwing out another possible disease. I am also glad that he is ruling out everything, and seems to be moving pretty quickly compared to what some people on the board experience.

I think if I were you (and I was a couple of weeks ago), I would want to have the test. Now that the possibility has been raised, you will always be wondering. It is better to set you mind at ease and know for sure.
Wishing you all the best - keep us posted.
Debba

[jillmb]

Debba

Thanks Debba!
I know you understand what I am going through. Oh, I found out that my insurance co. will pay for the test, so I feel like I have to go ahead with it. I definitely want to know but I am terrified! I am having an MRA of the blood vessels in my head on Wednesday, so I am going to do that and see what the results are. Then, I see my primary doc. the following week for a physical, so I will talk to him about it. As you can see, I am totally procrastinating about this test!!!

Thanks again:-)
Jill

P.S. What is the "box from Athena" you mentioned? All I have to do is go to a local hospital for the blood test and they send it to MA from here. Am I missing something?

Jill,
I just had to respond to your post. I totally understand why you are upset. As I said previously, I just had the CADASIL test. My neuro told me "I want to test you for one more thing, it has to do with the blood vessels in your brain and it can be an expensive test. I don't think you have it, but I want to make sure". Because I want an answer to what is going on I said ok. He never even told me the name of the test.

So a week or so later, a little box arrives from Athena (the co. that does the test). When I was looking at the paperwork, I saw the name CADASIL. So of course I Googled it. I was absolutely horrified. I was so scared and mad, just like you. Like I said before, it makes you realize there are worse things that could happen than MS.

Then, 2 weeks later I get the call about the cost of the test, and it makes me mad all over again! Luckily a call to my insurance made that all better.

Sorry this is so long, I just wanted you to know that I totally understand where you are coming from. I was shocked, mad and scared when I found out what the test was. Looking at it now that I am negative for CADASIL, I think the dr. might not have wanted to alarm me by throwing out another possible disease. I am also glad that he is ruling out everything, and seems to be moving pretty quickly compared to what some people on the board experience.

I think if I were you (and I was a couple of weeks ago), I would want to have the test. Now that the possibility has been raised, you will always be wondering. It is better to set you mind at ease and know for sure.
Wishing you all the best - keep us posted.
Debba

[Debba]

Jill,
Sorry for the late reply, I have been away, but I have been thinking of you. As for the box, for some reason Athena sent me a box with all the supplies for a blood draw and then someone can out to my house to draw the blood. I thought it was strange - I have never heard of such a thing. Not sure why they did mine this way.

Have you had your MRA yet? Hang in there.

[jillmb]

Debba~

Oh, I see! I can just go to a local hospital where they draw the blood and send it out directly from there. I guess you weren't close enough to a place where they could have done that? There is just one place near me that does it, and it's about 20-25 minutes away. Actually having someone come to my house would be a lot more convenient!

So, I have my MRA tomorrow morning. I haven't done the blood test yet, but I'm sure I will do it sooner rather than later! Did you ever have an MRA done?

Thanks, Jill

Jill,
Sorry for the late reply, I have been away, but I have been thinking of you. As for the box, for some reason Athena sent me a box with all the supplies for a blood draw and then someone can out to my house to draw the blood. I thought it was strange - I have never heard of such a thing. Not sure why they did mine this way.

Have you had your MRA yet? Hang in there.

I think

I don't understand what the big deal is. It sounds like he is ruling out EVERYTHING including CADASIL by having you take the test. He's just doing his job so there's nothing to freak out about.

Reagan should be a wee bit kinder.

Anyway, I think if your ins. will not cover the test, Jill--just let your doc know and see if there is another way to check this out. Some docs are very cautious, and perhaps he has had an experience with this disease in the past. You never know.

[Debba]

Jill,
I wasn't sure what a MRA was, but I looked it up. Yes, I think I had one early in my diagnosis stage, but that was due to the history of aneurysm in my family.

I talked to my neuro again today. He wants to put me on Copaxone and also send me for a second opinion. I guess it is good he is being extra cautious. He wants me to go up to Boston to see a MS Specialist. He is just a regular neuro.

Good luck with your MRA. Keep me posted.