I forgot this yesterday, sorry​ - My MSAA Community

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I forgot this yesterday, sorry​

RoyceNewton profile image
16 Replies

Advice time again, do you have to get an MRI? They actually have open machines. it is like going into 2 slices of bread. Wide open on the sides, makes it a little less claustrophobic, still did not work for me, so I went to VALIUM. Take as prescribed and sleep through it, remember not to drive home, I have not driven in years so no big deal.

Got to go get blood work. Immediately say YOU faint, ask for the smallest gauge needle. The bigger the number means smaller needle. No matter what they say ask if they can use a "butterfly". I believe they use that for children. Trust me though, if they will use it, get them too.

Next, last time I checked YOU are the paying patient. Never ever just take the medication because the Dr says, and they are DR's. ASK what for and ask for proof. When you do not understand something ASK. They are messing with your Central Nervous System, do YOU not think that YOU deserve a good answer as to what is going on, what results, what side effects? They do have chemists, Pharmacists, develop a relationship and ask them as well. Always ASK somebody.

This is why I say LEARN about your illness. It will make YOU more comfortable with your treatment and less able to be financially conned. ASK for proof, "does that really work, where can I see the proof, what results and how soon will I see them, what will those results look like?"

Be educated do not let yourself fall for charlatans or do procedures YOU do not HAVE to do.

One of my favourites are spinal tapes, still never done one and NEVER EVER will, stand up for yourself. Do not let yourself be pushed around, YOU are the boss, remember.

Always ASK. Be educated and learn. But try not to be too scared or paranoid, most ALL medicines do have some side effect. Just be AWARE do not just do things because somebody said unless it makes sense and is right for YOU.

Royce

As we continue our journey, just chatting.

16 Replies
Kenu profile image
Kenu

Great advise for newbies and good reminder for the rest of us 👍. 🐾😉Ken

RoyceNewton profile image
RoyceNewton

A success I learned something new today.

kdali profile image
kdali

The gauge of the needle and use or not of butterfly has a lot to do with the patient’s veins, age, type of tests ordered, amount of tubes to be collected and what the clinician is proficient using.

RoyceNewton profile image
RoyceNewton in reply to kdali

they use a butterfly on me because I am a wimp and ask for it. I would make a terrible druggie, which is amusing because of the huge amount of pain pills I was poping daily for TN

kdali profile image
kdali in reply to RoyceNewton

Sometimes using a butterfly results in multiple attempts though because they clot off too easy or if the person isn’t use to having to hold the wings, when they go to stick it’s awkward for them. Sticking the hand is usually more painful than the arm. There’s a buzzy bee or ladybug they use for kids getting shots, you put it above the site they are sticking and the vibration interrupts the pain signal to the brain and might be handy for you if you get blood draws often.

RoyceNewton profile image
RoyceNewton in reply to kdali

never heard of this but it is for those anti-needle people like ma.

kdali profile image
kdali in reply to RoyceNewton

Amazon.con has them!

cheshcat profile image
cheshcat in reply to RoyceNewton

Sometimes they have to break out the butterfly for me but it's because of my awful veins. I prefer them to get it out the regular way, it's less painful for me, but sometimes that butterfly has to be broken out.

I wonder if they can use the numbing cream? They used that for my youngest because she has severe anxiety. What I've done for her too is have her focus on a breathing app on my phone.

kdali profile image
kdali

Truth, but I think it’s more the sequencing that needs to be done or entire lesions are missed because the slices in the open scanners are larger. I looked it up and Lois is right, most open are less than 1.5 and the images are less useful. But if it’s that or nothing, do open! I was thinking about the difference in regular brain/spine and MS protocol brain/spine, and once you’re diagnosed (or if you’re lucky and your MD orders it that way initially) they will run a package with more slices.

Ethyrum profile image
Ethyrum

I had an (closed) mri in February. The opening was MUCH bigger, compared to the machines I was slid into over the last 22 years. I found it to be notably less claustrophobic.

kdali profile image
kdali in reply to Ethyrum

Thats great! I’ve never seen an open one to know the difference. I’m ok in the tube, but the face cage they use at some is a little much in my opinion. You’re either going to stay still or not and that thing isn’t going to keep a leg still anyway.

JMWCO profile image
JMWCO in reply to kdali

The face cage for the mri I’m told is the focusing lens for the brain. The mri I was in for my brain vs spines were two different closed MRI machines. I find it interesting to look at the scans after and see the slices and know that’s YOU. Odd feeling looking at your own stuff but good to be aware.

kdali profile image
kdali in reply to JMWCO

Ahhh, ok, ty! I always bring a disc home to make sure they loaded the software so my MD can view it (she’s an independent practitioner). The first one was creepy because it was ME and those were MY lesions. My last one the radiologist actually read in detail, which was a nice change from “yep, looks like MS”, so my MD didn’t feel the need to look at the disc.

Ethyrum profile image
Ethyrum in reply to kdali

I get a copy of the MRI on a disc as well. You’d think I would be interested in looking at it since I teach a college course about brain function, but I haven’t looked at them in over a decade. I just keep them all rubber banded together and then take them with me to appointments. When I went to Johns Hopkins a year and a half ago for a consultation, the neurologist said my MRI would be very boring to his residents. When I went back a few weeks ago for a second consultation, he didn’t say that :-(

kdali profile image
kdali in reply to Ethyrum

Yikes, that’s terrible. I’ve looked at many MRIs and CT scans that were exciting and I want no part of that for myself. Boring please!

RoyceNewton profile image
RoyceNewton

see we really can learn from asking and listening.

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