An update

[Daisycat]

My first MRI report said white matter lesions most consistent with a demyelinating disease , most likely .... Other causes of demyletion are thought to be unlikely at this time. I have that fist one memorized word for word since I have googled pretty much every single line in that thing 10 times. I do have some medical background but neurology is defiantly not my strongest point. I basically just learned what damage to each part of the brain/spinal cord can mean for an animal. This reminds me I should look over my old school notes….

I don’t bring anyone with me to the regular appointment , but for any testing I have always had my bf there. I am still ashamed of this so I don’t want anyone around when I am talking about this. After my first MRI I was told you have this and that was it. They did do some other rule out testing but in my opinion it wasn’t enough.
I realized I have been in 100% denial for the past year and now if I have to accept this I am not sure if I will be able to handle it. So maybe it is better for my Dr to wait till my next appointment (December). I had one with him 2 weeks before this MRI.

Now I figure I am going to pick 3-5 things a month from my bucket list. This month and next is losing 10 pounds, getting my next 5 piercings, dying my hair the unique colors I have wanted forever, going skydiving, having my dog win a race at the dachshund races , go bungee jumping , and get my cat’s paw print tattoo on me. (Although that’s going to be hard since she was not a fan of us trying to get a copy of her paw print)… Well and to win HQ but that’s never going to happen because that app and game are evil but at least that’s something I’ll always have to work for.
I even asked about this being CIS and my neurologist said, “No that’s not a thing.”
It very obviously IS a thing since I spend 6 hours reading about it when I was in that prison/hospital last year.

[Seasha]

Had my mri today... only thing my dr told me in a very rude and short response was “no active or new lesions”. Didn’t answer me about when I asked if there was any change to existing ones.

Daisy - have you thought about going to a new MS doctor? One who will be open to discussion, take their time with you and answer your questions? I went through 4 of them before I found a good one. It irks me that this doctor was rude and dismissive of you and telling you that there's no such thing as CIS. You deserve better!!

Good luck on your "bucket list" - Some sound really fun. You are brave to try skydiving as it's not for the faint of heart!

[Daisycat]

Daisy - have you thought about going to a new MS doctor? One who will be open to discussion, take their time with you and answer your questions? I went through 4 of them before I found a good one. It irks me that this doctor was rude and dismissive of you and telling you that there's no such thing as CIS. You deserve better!!

Good luck on your "bucket list" - Some sound really fun. You are brave to try skydiving as it's not for the faint of heart!

I am looking into a new neurologist. I have found one I want to see , but I need a referral from my PCP and he is on vacation until Mid of next week... so I have to wait. And I am really excited for some of the things on my list... going to have to save up some money for some of them though. I know my PCP will call in the referral for me ( he offered to do this a year ago, but I just didn't even want to think about it)

[Daisycat]

So my response from my "neurologist" was this- "will discuss at next visit". I am sorry but that is NOT good enough for me. That response is letting my imagination run crazy and the lack of caring from this man is infuriating. I have already looked into two different doctors and thankfully neither of these two need a referral. Why would he refuse to give me an answer about my tests? I read the lab result (they were the most poorly written things I have ever seen).

It told me nothing and I am usually pretty good at decoding the medical speak of these reports. All I know at this point is nothing new or showing signs of being active. I don't know if anything has improved (which I know possible at times). I am so angry right now that this man can't even have the decency to answer my questions.

At least this will help with my weight loss goal since I have been throwing up non stop for the past week from nerves. I was hoping it would go away after I got my results but apparently since I am not getting full results for who knows how long I get to spend the next few months throwing up.

[sarabeach123]

Hi Daisy,

It seems unfortunate to me that you are able to get a report right away from your MRI without having an MS neurologist go over it with you. It wasn't particularly bad in your case because it was good news, but in general, I think it is terrible to give a patient a report without having it explained to them, in case there was not good news! As terrible as waiting is, I think it would be better to wait to get the information from the neurologist.

Everyone's experiences are different depending on what part of the world they live in, so I realize there might be a different system at your hospital. For me, there is only an MRI technician present when I get my MRI and they aren't allowed to say anything at all. Then later (perhaps later that day, or perhaps later that week) a radiologist reads the scan and writes a report. They send it to my family doctor and my neurologist. I don't even bother looking at the report until I meet with my MS neurologist. My MS neurologist knows so much more about looking at the MRIs for MS than the radiologist, and he explained to me a mistake the radiologist made on one of my reports. My MS neurologist will bring up the scans and show me everything on the screen. This helps with my anxiety a lot. I like to see exactly what is going on and have him explain it to me. Of course, this doesn't really mean I become an expert or anything, but it makes me feel better!

My MS neurologist doesn't even read the reports that the radiologist writes. He reviews the MRIs themselves.

Usually the wait time between getting the MRI and having the appointment for a follow up could be 3-4 months, so I try not to think about it - easier said than done sometimes!

If you are seeing a general neurologist, you really need to see one that specializes in MS.

[Daisycat]

I have switched to a new neurologist since my old one is terrible. I don’t think he understands that me finding out if there was *any* improvement from my last MRI is basically me finding out if I have a future or not and telling me to wait till December is rude and unprofessional. I also do not think he understand that I cannot eat or sleep or do anything but Dr Google right now. If any of the Drs I worked with treated their patient’s this way they would be fired and lose their license.

[Mamabug]

Now I figure I am going to pick 3-5 things a month from my bucket list. This month and next is losing 10 pounds, getting my next 5 piercings, dying my hair the unique colors I have wanted forever, going skydiving, having my dog win a race at the dachshund races , go bungee jumping , and get my cat’s paw print tattoo on me. (Although that’s going to be hard since she was not a fan of us trying to get a copy of her paw print)….

wow! You've got some exciting plans. All of us should practice goal-setting on a regular basis. And re-evaluate them from time to time. But probably not all of us set such ambitious goals.

You go, girl! And, be sure to give yourself some grace if it takes you longer to accomplish it than the time frame you for yourself.

[trevvian]

I have switched to a new neurologist since my old one is terrible. I don’t think he understands that me finding out if there was *any* improvement from my last MRI is basically me finding out if I have a future or not and telling me to wait till December is rude and unprofessional. I also do not think he understand that I cannot eat or sleep or do anything but Dr Google right now. If any of the Drs I worked with treated their patient’s this way they would be fired and lose their license.

It's good to find a neuro who "gets" you! I have to admit, I chose my neuro because of a greyound named Ben. It seemed to me than any doctor who fosters dogs must be good people, right? Also he laughed at my jokes.

I do think doctors probably get jaded in a way that came come off as insensitive. To them, no progression is good news, and they know it's a life-long disease, so what's 90 days to get more info? Whereas to me, as a patient, it seems like an eternity. That doesn't excuse not going through your results in detail, but I suspect it's common.

I have kind of gotten over the "waiting to see if I have a future" phase in favor of living in the now. I love your bucket list and wish I had the guts to do half those things!

[Ant1981]

Dr. Google

I’ll just say one thing... my neuro said don’t read everything on the internet. You must have read that you can absolutely live a normal life with MS by now too. You had double vision as your predominant sx, my flare was terrible, couldn’t walk and was in a wheelchair for 2 days, now I feel great! Doing very well. So your life is not over.

[Daisycat]

I think my problem is I don’t have a real dr so I have to use dr google. I know how bad it is. I deal with people who use dr google every week (my practice manager is starting to make me do all “dr google” questions to show me how evil it is)- since she knows how this is effecting me. .

I feel great now and that’s why I’m going to finish my bucket list. I’m not going to live one day with any disability. (Well anymore than I have too). Not going to do anything crazy but for now I’m going to work on my bucket list. I am getting 5 piercings October 15 and my tattoo of my dog outline next week. Still need my cats paw print somehow.... .

I’m going make sure these next 5-10 years are amazing but when my mris start to show decline I’m going to make use of the company over seas that believes like I do that people deserve to avoid certain suffering. I wasn’t sure I was going to join them but after my neurologist treating me like a piece of trash and realizing this is how I’m going to be treated more and more it made my choice easy

[KoKo]

Daisycat

I think my problem is I don’t have a real dr so I have to use dr google. I know how bad it is. I deal with people who use dr google every week (my practice manager is starting to make me do all “dr google” questions to show me how evil it is)- since she knows how this is effecting me.

Good luck with your search for a new doctor.

I feel great now and that’s why I’m going to finish my bucket list. I’m not going to live one day with any disability. (Well anymore than I have too). Not going to do anything crazy but for now I’m going to work on my bucket list. I am getting 5 piercings October 15 and my tattoo of my dog outline next week. Still need my cats paw print somehow.....

So glad to hear that you're feeling well. Looks like you have some interesting goals to pursue!

Take Care

[Daisycat]

So I have a cd with my mris on them. Gonna figure out if looking at them sober or drunk is better. Haven’t drank since March but for this I might need something...I have my first vacation next week so maybe I’ll wait till then since I see myself analyzing every inch of that thing.

[Ant1981]

DMD

I think my problem is I don’t have a real dr so I have to use dr google. I know how bad it is. I deal with people who use dr google every week (my practice manager is starting to make me do all “dr google” questions to show me how evil it is)- since she knows how this is effecting me. .

I feel great now and that’s why I’m going to finish my bucket list. I’m not going to live one day with any disability. (Well anymore than I have too). Not going to do anything crazy but for now I’m going to work on my bucket list. I am getting 5 piercings October 15 and my tattoo of my dog outline next week. Still need my cats paw print somehow.... .

I’m going make sure these next 5-10 years are amazing but when my mris start to show decline I’m going to make use of the company over seas that believes like I do that people deserve to avoid certain suffering. I wasn’t sure I was going to join them but after my neurologist treating me like a piece of trash and realizing this is how I’m going to be treated more and more it made my choice easy

Get on a DMD and no one knows wat research will bring in 10-15 years so I think the future is bright.

Chin up!

[Daisycat]

I use copaxone and that’s my best option when I eliminate the ones that cause immune suppression, require hospital stays, or don’t have copay assistance. I’m saving more money now that I’m only doing the minimum on my student loans but I have other things I want to do while I can. And I don’t think they will ever cure this... there is way to much money in treatment

[gargantua]

there is way to much money in treatment

Hopefully lots of it goes to research! They cured smallpox...