Migraine 3rd MRI-waiting for results (the long game)

[Decode]

Had my 3rd Head MRI the other day. Booked to discuss the findings with my neurologist in a couple of weeks. Yet weirdly I can't stop thinking of the possible results.

My previous scans showed a 1.9cm Pineal cyst. I saw the scan and couldn't even see my pineal gland. It could have grown or shrunk or completely disappeared. It may not have even been a cyst to begin with. Waiting is agony.

I had a recent Hemiplegic Migraine attack which was very bad. Mobility was awful that I am still recovering with a walking stick to this day. I still get nerve pain and weakness on my left side.

However looking back at it now, was it just a Migraine?

My grandmother had MS, and my anxiety and worry is probably making a big deal out of it; but what is the difference really between Hemiplegic Migraines and MS?

From the internet research , it doesn't look that different from the external symptoms of a person.

So anyways apparently my MRI could show if I did have a MS flare which is interesting.

Ah, sorry for ranting! I am one of those who wants to know straight away (be diagnosed asap) so I can prepare so that's probably why my brain is overthinking this.

Thanks for reading! Please comment about any of your experiences. It always warms my heart to know that I am not alone!

[1518]

Hi, it’s really hard waiting isn’t it? I hope the news is good when it does come. Like you I have hemiplegic migraines but they have changed over the years and the hemiplegia is much less noticeable. I have all sorts of weird symptoms now and it’s hard to believe they are “only” migraine! Fortunately or unfortunately depending on how you look at it, all of my scans and tests don’t show anything that would account for them and so migraine it is! It really doesn’t help that it’s so misunderstood by those who don’t get migraine, who think it’s just a headache- wouldn’t that be nice, just a headache! I really hope that you find some relief for your symptoms, best of luck.

[Decode in reply to 1518]

Thank you! Yeah annoying when people think it's just a headache. When I say Hemiplegic migraine, they have never heard of it so I say its like a stroke and the horror on their faces is priceless. Hope you find relief too!

[BitBrokenBrain]

I hope you’ll share the results if you’re comfortable. Are you SHM or FHM? I do wonder often if my hemiplegic migraines are more that just that. I’ve only known a few people with MS and none of them experience the facial droop and paralysis- just the weakness in their limbs (along with their other symptoms). My brother has myasthenia gravis and does get a little “melty” looking in the face sometimes, but not like we do with HM. I’ve had a spinal which got contaminated by the stuff they used to numb me (basically sunburn spray). They could only use it to rule out a few things, but not MS. It’s not something I’m eager to repeat though, because I have an allergy to the numbing stuff they normally use and still feel pain in the puncture area 2 years later, when I bend. Hoping for a good outcome for you, but one that comes with answers that help you manage what you’re living with. 💙

[Decode in reply to BitBrokenBrain]

Thanks. I think mine is FHM as my cousin has them too.

[Swim21]

So have you now had the results? Im having my second mri in a weeks time

Last one being summer 2020. I had ct and venogram too. First mri says 1.9 cm lipoma not causing any problems. Have had chronic migraine now for 10 months and tried all usual drugs and Fremenuzab/ajovy and Cefaly machine and Botox x1. Nothings touched the pain yet and im terrified were running out of options. Do you have ms symptom of facial tingling/pins and needles? Ive had this very severe since summer 2020. And light and noise aversion all my adult life. I had a cranial hemorrhage in September but no one was bothered as outside the skull. I sleep a lot , am well hydrated and exercise a lot swimming wen pools open and walking when theyre not. I couldnt be more healthy for 58. Yet im told everythings normal.”Just” chronic migraine.

Well my trigeminal nerve isnt happy for sure. Interesting the neurologist told me botox would block pathways and the pain moved ! Like it found another alley to go down. Am interested in your outcomes and cooing strategies and wish you Luck.

[Decode in reply to Swim21]

Hi So I planned a telephone appointment to discuss it but no phone call at all happened on the day it was meant to.

I did however get another appointment with a different neurologist via a different hospital system which could be to discuss the MRI or was a simple referral somehow. Should hopefully find out more in a week's time about that.

So no I am still in the dark.

I wish I could claim to be a healthy individual but always had problems with my weight and I only lost weight last year. I miss swimming! I do Zumba (at home), walking and tai chi when I am feeling up to it! Off my diet at the moment and need to get back to it!

Chronic migraine for me seems to be eased by Botox but not my HM.

Am interested in your outcomes, cooing strategies (sorry it made me lol so much that one) and wish you luck too!

[Swim21]

Coping* strategies

[Decode]

Update: I finally have my MRI scan result and the cyst has stayed the same. This has remained the same since 2018. Is that normal? I now have a neurosurgeon assigned to my case and he said he agreed to an annual MRI scan to keep an eye on the cyst. ABOUT BLOODY TIME!Also no signs of MS. Phew!

[SimonHunter in reply to Decode]

Hello was diagnosed pineal gland cyst July 2019 after mri scan for tinnitus had follow up scan feb 2020 still the same but now booked in for mri scan with contrast next week . Only thing they said was it was very small but I’ll see what happens next week

[Onthemove1971 in reply to Decode]

this is such great news, I know you feel better!

[SimonHunter]

Had MRI scan with contrast on Tuesday and got results today Wednesday from neurosurgeon and this being my third scan over 3 years still no change in size of cyst and he’s put me for follow up scan 2 years time but if any change he’ll bring scan forward but he thinks it could be something I was born with

[SimonHunter]

My symptoms of pineal gland cyst . Left side of head above ear tinnitus and feeling of pressure and if I don’t wear a hat gets very cold .Been the same over the years even after the MRI scans but scans clear no change in size of cyst and consultant says just part of it also have APS syndrome