Pre-MRI, Pre-Diagnosis Anxiety
August 8, 2018 11:18 PM   Subscribe

I'm currently awaiting an MRI to see whether I have spinal inflammation or lesions. I made the mistake of looking at Dr. Google post-appointment and now I'm freaking out. Any personal anecdotes about dealing with type of potential diagnosis and/or anxiety would be extremely welcome.

Last week I asked a question about a numb torso and, based on the advice given, I got myself to a neurologist quickly. After an assessment, he speculated that I have spinal inflammation (or something along those lines) and is trying to get me an MRI within the month. I checked out what this means and it seems... scary.

At the moment I'm not really sure how I can focus on anything until I get my MRI, and I just foresee a month of imagining a future bedridden and incontinent. It also looks like spinal inflammation is often caused by autoimmune diseases, so I'm terrified I will also be diagnosed with one of those eventually.

I shouldn't have googled any of this but I did, and now I can't unread it all. I read some older threads about dealing with the pre-diagnosis waiting and they helped a bit. I'm wondering if any of you have had to deal with or have experience with my particular potential issue or, if not, specific things you have done to deal with this limbo state. It sucks very much, I'm scared, and I can't even think of ways to distract myself.
posted by thebots to Health & Fitness (7 answers total) 1 user marked this as a favorite
I am so sorry you are going through this. I went through this recently (spine issue, MRI, googling revealed terrifying possibilities involving paralysis and/or death) and it was frightening. I feel your pain!

I found it helped to talk things through with people who were kind and understanding and affirmed that I had every right to be scared and didn't try to minimize things. Interestingly, this helped me feel like I could just let it go for a bit and think about other things. Do you have anyone like this you can talk to? If you have EFAP through your job, you could book an appointment with a counsellor.

I also watched a lot of funny and non taxing Netflix shows, read light and funny but engrossing books, and listened to interesting and lighthearted podcasts. (There are lots of AskMe threads with great recommendations.)

Occasionally I allowed myself to just get in there and wallow, imagine the worst case scenario, and then tell myself, okay, if that's what happens you'll deal with it when it happens.

Good luck--I hope that you receive good news after all this! I did end up being diagnosed with something, but it's just abnormally early onset of a common and manageable chronic condition. It wasn't the cancer I was worried it would be.
posted by hurdy gurdy girl at 12:37 AM on August 9, 2018

If this helps at all (ignore if not) - I had a similar numbing issue and when I had a grey spot in my vision about a week later, they gave me an MRI and found some lesions on my brain and one on my spine. So, I have MS - but both symptoms cleared up within a week of taking prednisolone (a steroid) and I have not another flare up in over five years. I get yearly MRIs and see my neurologist at the same time. I have other things like I am more sensitive to heat and get tired sooner, but that is just as likely to be age as any kind of MS issue. I have a friend who was diagnosed 10 years ago and she uses a cane sometimes in the winter and takes regular medication, but she is still working and living a very similar life as before.

These are just two stories, but I want you to know that even the scary sounding stuff is often just an annoying thing you get to deal with now and not a huge life-altering thing. If something bad is found, take time to grieve and share your info with the people you need to lean on. You don't have to tell everyone right away.
posted by soelo at 7:24 AM on August 9, 2018 [1 favorite]

I have cancer, so this is kind of my life right now. I'm looking forward to the answers.

My therapist said something early on that has been very helpful to me. It was the simple statement, "You don't know what's going to happen." That seems simple, but really, it's very helpful. Whatever this turns out to be, it's highly unlikely that there won't be treatment options. And you may do very well with treatment. There's just no way to know.

Another thing he did that was really helpful was pointing out that I had told him I was worried about how much time I had left, then said that I just wanted all of these tests to be over, so I was wishing that the time I do have would go fast. That has really helped the way I think. It's a cliche to say you should really enjoy each day, but it's true. Even though these days are very stressful, they are days that you have with beautiful things in them - even if it's just a flower outside the window. I don't want to downplay how hard it is to get into this mindset, but if you can appreciate that these are days that have been given to you and that you are lucky to have, even when they're hard, it can really help.

I also spend a lot of time thinking about the randomness of the universe and how lucky I am in many ways (warning: this paragraph could be more upsetting to some people, but it's helpful to me). I could have died at birth. I could have had brain cancer at three or died in a car accident at eighteen. I could be living in a country that's at war. There are so many people who will leave their houses today thinking everything is fine and never go home. Again, I don't want you to feel like there's anything wrong with you if you aren't feeling particularly grateful right now, but it really makes a difference if you can learn to think that way at least some of the time.

And if you feel like whining, you can whine. Nobody should tell you how to deal with this.

Good luck to you. I hope for the best possible outcome.
posted by FencingGal at 7:27 AM on August 9, 2018 [5 favorites]

For me, it was the not knowing that made things worse. I had to basically push the questions out of my mind and stay the fuck off the internet because every little thing I read made things seem like it was going to be even worse.

(Fun tip for neurologists: don't text on your phone to the MRI folks while I'm in the exam room with you saying that you're getting me in for an MRI in a few HOURS--THAT DOES NOT HELP MY ANXIETY ONE GODDAMN BIT.)

So at least the fact that they're not doing that means that it's not something too terrible. The only thing that worked for me was to just do other things and not look up my symptoms or anything about being sick on the internet (easier said than done, I know).

(As it turned out, I do have an autoimmune disease but mine is currently controlled with medication and monthly infusions--so even if you do wind up with something--there are options!)
posted by sperose at 8:10 AM on August 9, 2018

When my doc got me in to for an MRI in three days, I was similarly panicked.

I came across this maxim:
worrying is like praying for something bad to happen
and it helped me take a step back. I could spend time deep in anxiety, or I could think about the good things in my life now.

(MRI showed nothing terrible.)
posted by Jesse the K at 12:34 PM on August 9, 2018 [2 favorites]

Thank you all so much! I feel appreciably better. And @soelo your personal experience helped me focus a lot on the reality of the situation, I appreciate it. Any other insights are still welcome though!
posted by thebots at 1:24 PM on August 9, 2018

What helps me greatly is acknowledging that there's no way to fix it without going through the tests and the waiting. Once I have a test scheduled I can let the anxiety go, because the test is what is going to help me get better and until that test happens I have nothing to do, no responsibilities.

Maybe you can call the office again and inquire about when you can schedule the MRI? ASAP is preferable but having a date on paper is the next best thing.
posted by lydhre at 7:15 AM on August 10, 2018

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