I have been diagnosed since 2013 I had several neurologists and none of them recommended a MRI until now.
I get claustrophobic in confined spaces. My new neurologist wishes for me to have one. Any advise on how to cope while taking the test? Change neurologist?😅
What's the purpose? is there some doubt as to the diagnosis?
I'm skeptical as to the value unless they are attempting to rule out/in another condition that the MRI is likely to reveal. Your typical retail MRI doesn't really tell you much about what PD is doing to the brain. 18FDG and SPECT might be better but even then, how will it inform treatment? if the scan suggests half your brain is missing, how will the ensuing treatment be any different than if it didn't, given that the purpose of the treatment is to alleviate your symptoms and improve your QOL?
I'd ask why they want it (they should have explained it when they suggested it, given how hard and expensive it can be to get to talk to them) and go from there.
You raise some important issues to consider. I was not told the reason other than establishing a baseline for the future. Thanks for your input.
I agree with kevowpd. A baseline for what? Since PD is not diagnosed with an MRI, what are they wanting to track?
Only a DAT scan can give any information about having PD and that has an 80% accuracy.MRI can show brain damage, shrinkage etc.
Thanks for responding.
Parkinson’s can be difficult to differentiate from other parkinsonian syndromes or essential tremor. DaTSCAN, which measures the density of nigrostriatial dopamine transporter sites, may in some cases help the clinician make the correct diagnosis. However, its clinical utility has been questioned, as most evaluations have compared DaTSCAN with clinical examination, which has itself been found to be incorrect in 6% to 25% of cases. (1) The ideal gold standard comparator would be neuropathological diagnosis at post mortem.
My symptoms respond to parkinson’s medication I have very little doubt about the accuracy of my 2013 Parkinson’ s diagnosis and I am claustrophobic so my motivation for the test is low.
My new neurologist wants it done to establish a baseline of the status of my brain. There might be some benefits so I might do it.
Thanks for responding
when my husband saw a neurologist for the first time in 2017 to try to determine if he had essential tremor or Parkinson's the doctor ordered an MRI which according to him was to see if there was anything problematic going on and a few hours after the MRI he had shingles
I had a fractured skull, but I got a CT scan in July 2021, but that was to discover what damage the fractured skull had done to my brain, a double seizure in Jan 2018, I was in hospital at the time I had serious reactions from AZ vaccine, so it was a general 'maintenance' look around, I have been on the verge of confirmed PD for many years, even been tested twice, both times negative 🤞 I myself am claustrophobic, remove doors from rooms, move furniture especially in my bedroom, I live by myself, too old now to move in with anybody else 68, but if taking a MRI make sure you do tell the relevant neurologist [I've had that many MRI's over my lifetime I am oblivious to the claustrophobic angle now!]
at dx i had mri to determine nothing else in brain tumour etc. was told congrats nowt wrong with brain its pd🤔
Same for me. Wasn't it exciting to know it was "just" PD? 🙄😄
Thanks for replying. Is there a silver lining in having PD? 😁
Don't think so. Just lack of empathy from doc
I had a couple of MRI scans for research purposes. It was an interesting experience.
I don't see any downside to having a scan, unless you have to pay for it yourself. It might show whether you have any problems apart from idiopathic Parkinson's.
When i was first diagnosed i had really mild symptoms and refused medication. Iwas never suggested an mri but suggested and had a DAT scan which was a definitive diagnosis that I had PD.
Thanks for replying.
80% accurate that it's PD
There is a lot they can tell with a brain MRI. My husband had one in 2020. Of course the report uses a lot of big words that you have to look up, but basically they could tell that his brain was aging faster than it should for somebody his age. This along with some other tests led to the Dat scan that confirmed his Parkinson's. It does also set up a baseline. He might be getting another brain MRI this year just to compare. The doctor can give you something like a mild dose of Valium to calm you down in order to be in the machine. It will help. They also asked my husband if he would like to listen to music which helps -just close your eyes, and with music you can't hear the banging of the machine. Between a sedative and music you shouldn't have a problem, but they do have an emergency button if you need to get out in a panic.
Thanks for responding to my question.
The MRI can determine and thus rule out other causes of your symptoms (e.g. stroke, tumors, PSP). All of the four neurologists whom I consulted thoroughly examined the MRI scan in order to make their diagnosis.
I had one, they gave me Valium. I'm totally claustrophobic . They put your head, or they did mine, in an enclosed case so it can't move. with the valium I didn't freak out. I had a syncope episode - this is why they did the MRI on the brain.
Thanks for your input. Iam already freaking out thinking of having my head confined.
It's not actually confined. More like a cage looking thing. I have had two brain mri and I took half a Valium and listened to yoga nidra while in there. It can be remarkably short if you go to a good modern lab. When I was diagnosed it was based on simple observations and I needed to know and was trying to make them wrong. So I kept looking for another neurologist until I came to my current one whom I love and she was happy to order mri of my brain and has since done a recheck too. There is a tiny blood vessel something in there and that is good to follow imho. Small strokes can happen without us noticing. And they can definitely be avoided in future by minding your stress levels. Hope that helps.
I had one to rule out rumors or other issues first. Then did the dat scan.
Thanks
I had one which showed that my brain was older than expected for my chronological age. I have both restless leg syndrome and claustrophobia. (I think my claustrophobia started when I was probably about 7 or 8 and my grandmother was babysitting me and my sisters and brother. This was a rare occurrence, I don't think my grandmother liked kids, and certainly not 5 at a time. So, my grandmother didn't alter her behavior much to baby sit. This meant that we watched the Saturday night movie on TV about a man who buried his wife while she was still alive. Just thinking about it still gives me shivers to this day. Thanks grandma.)
Anyway, when I got an MRI I was able to schedule one at a location that had "open" MRIs. So, it's kind of like your head is in the space between two large pancakes in a small stack of pancakes. This allowed me to have my arm out the side and move it around to help alleviate my restless legs.
Has the neuro explained exactly why h e/she needs the data from the mri? Can they get it from a CT scan? The reply might convince you or not. Apparently, an mri scan can only be used to detect one condition at a time 6im - except for a head and neck scan .I came out of mine crying, because it took too long and I find it difficult to stay in one position for 20 minutes. I pressed the "let me out button" but the nurse persuaded me to go back in as I only had 3 minutes of the procedure left - I don't think that was true.
Sounds awful. I can see the same happening to me. Thanks for sharing.
They could have given you a break. That's terrible.
I was told by my neurologist that the MRIs (three) are required to see if i am a candidate for DBS. Because I have stents in carotid arteries. She said the Surgery center ( probably UC San Francisco) would need them
Thanks for your input
interesting. Thanks
Ask for an open MRI . They can also give you headphones and play music that you like to hear. I also asked them to talk to me in between tests .Close your eyes before you go in the tube and don’t open them until you are out of the machine. You will also get a panic button to use if you need to. Good luck
Thanks for your input. It’s going to be hard for me. I was panicky in the open MRI seat for my knee. Imaging that the sides of the seat were adjustable and could crush was enough.
The first time I had an MRI they had to put me in. Bring me out at least four times before I was able to complete the test. I did fine keeping my eyes closed before I went in was very helpful again good luck to you.
I had a MRI in 2022 when I was being evaluated for DBS. I am not claustrophobic, but tremor dominant. I am usually well controlled with medication, but the slightest amount is stress sets me off. However, I refused sedation when it was was offered . Big mistake!!
Needless to say, I spent over an hour in the enormously loud tube, with jaw tremors and the scans were very fuzzy and barely readable. I wonder why they continued with the scan, and didn't terminate the scan because they should have known that they would get a poor result.
So, if you decide to go through with it, do ask for sedation, not just Lorazepam which is usually offered. Otherwise, it's a waste of time, money and effort.
BTW, I chose not to get the DBS. So a repeat MRI was unnecessary.
Hope this helps.
Hello, It's very uncomfortable to feel claustrophobic. I focus on breathing before I go in. I also put the ear plugs in my ears and cover my eyes before the device puts me in the tube. I never open my eyes while I'm in there and continue to focus on my breath and breath into different parts of my body. Hope someone gives you what you're needing.
Thanks for your support
I have had three of them during my 14 year journey of PD. They were all related one way or another to pd symptoms. 1. Approx 7 yrs before dx when we were investigating why I was having laryngeal spasms 2. After the tremor began, drs were eliminating the possibilities of stroke Brain tumour etc and 3 before I underwent dbs surgery a few years ago.I discovered how claustrophobic I was after the first one. Spoke to my doctor and he prescribed a tranquiliser to calm me down. It worked but I would not have been able to drive. I was glad to get home so I could sleep it off. If you think that it might work for you then you inform the medical staff member who is looking after your MRI and he/she will give you the medication at the right time before you go into the procedure. For me it was half an hour beforehand and easy peassy process after that.
I believe your neurologists want to confirm that there is nothing else going on in your brain. I think you will find that it is a normal process to eliminate other factors.
Thanks for your support. I am looking forward to easy peassy.
Had a DAT scan. Large metal plates rotate around your head 1/2" from your nose for 45-60 minutes, not fun. Came back positive.
I felt the same. I asked my doctor for a tranquiliser and he gave me two tablets of Valium. to take on the day. I only took one, and felt quite calm throughout. There is nothing to be afraid of,, honestly. (Don't take more than one at a time htough!)
I had an MRI to rule out previous stroke damage. I am very claustrophobic. I was given a sedative (Injection? Can't remember) and had no problems. I was aware of lights flashing, some noises. I think it was just the top of my head in the "tunnel", certainly not my whole body. Not unpleasant at all, and I was not woozy afterwards. Good luck!
1) as others have said, there’s no reason to have an MRI for the purposes of evaluating PD… the fact that you doctor didn’t tell you why they ordered this is pretty unbelievable. 2) if you are going to have one, you can have any number of anti-anxiety drugs prescribed. You also want to make sure that everybody involved in the process is aware of your claustrophobia concerns.
Have you had success with B1?
How long have you had PD?
Dopamine agonists turned me into a compulsive monster. Have you had similar experiences?
Have you had migraine headaches?
Have you experienced an apparent episode of neuropathy and successfully fixed it?
