Recently had my first MRI (awaiting results question)

[space8]

Right before Christmas I had my first MRI of the brain. The nurse said that the results would be available around a week later. Five days after the MRI I got a letter from my doctor with a time for a new appointment to their office two weeks later. Usually your results should be available through your chart online but I haven't seen any updates as of yet, and I'm sooo impatient.

I get that it's probably nothing serious since no one has called me about the results, but I'm overanalyzing what the appointment might reveal. I'm going between "is this a sign that they've found something and want to tell me in person or a sign that they haven't found anything and want to discuss how to proceed".

Does anyone have experience of being told their results after an MRI? Should I prepare myself for something or nothing? I know it's impossible to say anything for certain but I'm just so jittery about this. If they found something treatable that would of course be a huge relief. I'm not from the US so I suppose the procedures differ between countries, but anyway!

 

[BrightCandle]

My MRI showed nothing interesting to the operators. Admittedly I am concerned they just didn't bother/didn't know what they were looking for so didn't recognise the more subtle things instead looking for a giant tumour. However as far as I know its pretty common for standard MRIs to show nothing at the moment all the MRI tests that showed something are modified, looking for particular molecules with different frequencies.

 

[space8]

Sorry to hear that @BrightCandle. It's so frustrating to never find anything when you're ill, even though it's also a relief when it's nothing serious.

You could possibly ask for the scans and get a second opinion by someone? I've read posts by people with e.g. MS when researching how the answer from the MRI will be delivered and have already encountered a couple where the lesions were initially missed. Not that it's likely MS in our case when it comes to ME related concerns but it's never reassuring to know that things can easily be overlooked.

For me they scanned the pituitary looking for an adenoma since I've had some hormonal issues but since my doctor didn't call with the results I'm suspecting that they will just say that it's nothing and will want to discuss how to move on from here.

I'm happy I got to do an MRI either way after all these years since neurological symptoms have always been part of the picture for me (twitching, internal vibrations and such). So I'm hoping that they would be able to see other changes not related to adenomas as well so I can at least exclude that there is something wrong with my brain affecting my hormones/neuro symptoms.

 

[lenora]

HI....You're afraid and that's perfectly normal. You must be in a smaller area because hospitals in large cities tend to let you know right away....negative or positive, you're told and not always by the doctor.

It's possible the doctor wants to talk about more than one condition and you should take someone with you. Ask if they have a patient portal and sign up for it. I find that I often find out results before the doctor does. I know a lot of doctors are being help hostage (so to speak) because of COVID and the respirator virus in newborns and children. Even those who aren't pediatricians, say, so that could be a reason for the delay.

I've had this for probably 35 years or more now....so I tend not to get too upset. I have many things wrong and I just can't go into overdrive with all of them. Talk to someone close to you who understands the situation....it will help. Over the holidays, it's almost best to expect anything. So many people take time out and we're facing burnout by a lot of our medical personnel. Feel better. Yours, Lenora

 

[BrightCandle]

You could possibly ask for the scans and get a second opinion by someone? I've read posts by people with e.g. MS when researching how the answer from the MRI will be delivered and have already encountered a couple where the lesions were initially missed. Not that it's likely MS in our case when it comes to ME related concerns but it's never reassuring to know that things can easily be overlooked.

I didn't get this from my GP, I haven't been able to get a test for anything nor a diagnosis in 10 years. I paid for this myself privately. But 10 years in my ability to pay for private healthcare is gone so I couldn't do that even if I wanted to. So now I just get no healthcare which is the same situation for most ME sufferers, no diagnosis and no access to healthcare. There is a reason only 10% have a diagnosis and its not because they didn't go to their appointments or get second (or third, well now it would be 109th) opinions.

 

[space8]

Totally understandable @BrightCandle! And that's awful. I was thinking something like posting it online too and asking some forum dwelling radiologists to take a look. I think I've seen them do that sometimes. But I know what it's like to just give up hope and feel defeated at the thought of trying to get that 109th opinion.

I haven't gotten any help either in the last decade and can't remember the last time I went to the doctors for fatigue related concerns. I decided to try one last time and was pretty much forced by family members to go. I cried the entire day before the appointment but was lucky enough to have some findings not previously seen upon examination in the office and that's the first time I've been taken seriously by a doctor in forever. It was such a wonderful relief, so that's why I'm scared the MRI will show nothing because then I'm back to having zero hope of ever improving or being believed by anyone.

I've had some findings in my bloodwork but whenever they do find something it's always inconclusive. They also suspect I might have a very rare genetic condition that they can't even test for and can't explain how it's affecting my health overall so everything is up in the air and weird. I'm 15+ years into this and very over it too.

 

[Belbyr]

I've learned through 17 years of illness to not worry about anything until there is something to worry about.

 

[space8]

I've learned through 17 years of illness to not worry about anything until there is something to worry about.

Well, that's a good point but easier said than done sometimes!

Right now I'm mainly worrying that it will be nothing since I'm tired of experiencing all the symtoms I do, and getting small indications of things wrong without ever getting conclusive answers. It would help a ton to have something tangible to work with. I have never officially been diagnosed with ME/CFS. It's been a suspicion. Most of my symptoms point to it including PEM. But then I have a bunch of other atypical stuff. So I can't help hoping that they'll finally find something!

 

[hapl808]

It would help a ton to have something tangible to work with. I have never officially been diagnosed with ME/CFS. It's been a suspicion. Most of my symptoms point to it including PEM. But then I have a bunch of other atypical stuff. So I can't help hoping that they'll finally find something!

I also have the symptoms like extreme PEM, but then a bunch of atypical stuff (possible MCAS or even hypersensitivity pneumonitis), muscular issues (but not exactly like MS 'usually' presents, and not really MD, maybe EDS but not hypermobile), and so forth.

Diseases 173, Doctors 0

I tried to think of one thing that they really helped with so I could give them a pity point because I hate to see a team held scoreless, but I couldn't come up with anything.

 

[space8]

HI....You're afraid and that's perfectly normal. You must be in a smaller area because hospitals in large cities tend to let you know right away....negative or positive, you're told and not always by the doctor.

It's possible the doctor wants to talk about more than one condition and you should take someone with you. Ask if they have a patient portal and sign up for it. I find that I often find out results before the doctor does. I know a lot of doctors are being help hostage (so to speak) because of COVID and the respirator virus in newborns and children. Even those who aren't pediatricians, say, so that could be a reason for the delay.

I've had this for probably 35 years or more now....so I tend not to get too upset. I have many things wrong and I just can't go into overdrive with all of them. Talk to someone close to you who understands the situation....it will help. Over the holidays, it's almost best to expect anything. So many people take time out and we're facing burnout by a lot of our medical personnel. Feel better. Yours, Lenora

Thank you so much for replying @lenora! I can't believe I missed your response since I didn't see it at first. Only now after a night's sleep. I'm actually in a larger city but we don't have private healthcare here so perhaps you get a little faster care when going privately. So you're prioritized after need. I think they take a first look to exclude any acute issues and then put you on a pile to look more carefully for later.

It's mostly my revisit that's taking a little bit of time. But I can't tell if two weeks waiting time is quick or not. I usually wait over a month for any appointment so it's quicker just not acute. That's why I'm overanalyzing things. It's also the week after a holiday as you say and I think many take the first week off from work since kids in my country are still off from schools, so anyone with children might also not be at work right now.

I was considering bringing someone. Though I'd prefer to see my results in my chart online so I know what to expect or if it's truly necessary. I just keep thinking what it means that my doctor didn't just call but actually ask me to come in, but it could be like you say that they might want to talk about more than one thing. Or just conclude that there was nothing and ask what we should do moving forward.

Very sorry to hear that you've been dealing with this for such a long time! But it's good that you've managed to take a zen approach! That's always helpful. I've been feeling really hopeless the last couple of years so this turned out to be a very important occasion for me. I didn't even ask about the MRI myself. I just got it like that. It was a really happy surprise after not getting help at all for so long.

 

[space8]

I also have the symptoms like extreme PEM, but then a bunch of atypical stuff (possible MCAS or even hypersensitivity pneumonitis), muscular issues (but not exactly like MS 'usually' presents, and not really MD, maybe EDS but not hypermobile), and so forth.

Diseases 173, Doctors 0

I tried to think of one thing that they really helped with so I could give them a pity point because I hate to see a team held scoreless, but I couldn't come up with anything.

Same here! My PEM can also get pretty extreme. My ME/CFS symptoms (I say symptoms since I'm not officially diagnosed) has gone from moderate/severe to mild/moderate and that's great but I just have all these things wrong with me from metabolic stuff to my nervous system and hormones but nothing clear. So frustrating. I also have very MS like symptoms but it's probably not that at all either.

Sorry to hear about your confusing journey as well. It's so upsetting to almost have a bunch of things but never clear answers. And I'm also sorry that no one wants to look into your case. It's truly so sad that many of us are left without any care at all.

I've had two doctors being actually helpful (and this one I'm seeing now might be a third - I'm super grateful for the MRI. I didn't even ask for it and I was so surprised that someone wanted to help like that). But other than that I've almost only had unproductive meetings with doctors who just stared at me.

 

[hapl808]

Sorry to hear about your confusing journey as well. It's so upsetting to almost have a bunch of things but never clear answers. And I'm also sorry that no one wants to look into your case. It's truly so sad that many of us are left without any care at all.

I've had two doctors being actually helpful (and this one I'm seeing now might be a third - I'm super grateful for the MRI. I didn't even ask for it and I was so surprised that someone wanted to help like that). But other than that I've almost only had unproductive meetings with doctors who just stared at me.

I guess I've had some doctors who wanted to look into it, but in the end all the testing kept crashing me and I went from moderate to moderate/severe and more into severe. And all the testing came up with nothing - just ruling out stuff like ALS, etc. In the last 5-10 years (I've had it for 25 years), I've seen two neurologists, two rheumatologists (one an ME/CFS specialist), a neuromuscular specialist, a pulmonologist, a cardiologist, a naturopath, acupuncture, multiple physical therapists, GPs, multiple ID, and so forth. Exhausting and for me was sadly a waste of time. Probably missing something major, but now doctors don't want to deal with me anymore because I can't even get blood work without a permanent crash.

 

[Zebra]

@space8

After you've had your follow up appointment and received your MRI results, I hope you'll return to this thread and let us know what happened.

Good luck and hang in there!

 

[space8]

I guess I've had some doctors who wanted to look into it, but in the end all the testing kept crashing me and I went from moderate to moderate/severe and more into severe. And all the testing came up with nothing - just ruling out stuff like ALS, etc. In the last 5-10 years (I've had it for 25 years), I've seen two neurologists, two rheumatologists (one an ME/CFS specialist), a neuromuscular specialist, a pulmonologist, a cardiologist, a naturopath, acupuncture, multiple physical therapists, GPs, multiple ID, and so forth. Exhausting and for me was sadly a waste of time. Probably missing something major, but now doctors don't want to deal with me anymore because I can't even get blood work without a permanent crash.

It’s good that you’ve had a bunch of things checked out, but I know that with every clear test the further your heart sinks. Even worse when appointments make you crash. My symptoms are not as severe anymore so I can do appointments and tests physically without major setbacks, but it’s still difficult mentally since I’m so broken by the whole ordeal.

I’m still hoping for an answer. After being diagnosed with IBS for a million years and hearing nothing was wrong for ages and then finally figuring out (kind of) what was wrong with me it gave me some hope that it is possible to get there, though my ME/CFS symptoms seem almost impossible to figure out unfortunately. If they even can be with today’s science. I hope you’re doing alright despite the circumstances!

 

[space8]

@space8

After you've had your follow up appointment and received your MRI results, I hope you'll return to this thread and let us know what happened.

Good luck and hang in there!

Thank you and of course! I hate when there’s no follow up in threads. My appointment is this Thursday. But I’m counting on it being nothing since that’s the drill with me (or us). Gosh, please be something treatable!!! Or just something. I never get used to the hopelessness of having no answers. It bothers me so much.

 

[lenora]

Yes, @space8, it is frustrating to not have answers. I had a fabulous neurologist (recently died) who didn't have the answers either....but he tried and little by little I came to accept my situation.

I still have plenty of things just "hanging out there" but know that apart from the top tier specialists, these are unknowns to both us and the doctors (many do try, though). I have other neurological conditions that I've had surgery for....so perhaps that helps, but ME was in addition to them. My PT first diagnosed me and it was later confirmed by my neurologist. Now it's time for old age and its problems....I don't know what causes what and yes, it's frustrating. You wouldn't believe the list of problems I've been diagnosed with (and treated if possible). In the end, it doesn't make any difference....I still have the problems and really don't want to even bother with appointments any longer. No energy. I do make exceptions for the cardiologist, new neurologist, dentist (can cost a lot if we don't keep up with appts.) dermatologist every couple of years (I get skin cancers and it's best to catch them in early stages) and optometrist every two years. Enough, isn't it? I hope things go well. Yours, L.

 

[space8]

For @Zebra, @lenora and anyone else interested: My MRI was clear and the result actually felt worse than I thought it would, because now I'm back to having no clue how to proceed. I asked "was it clear, clear - like zero findings at all?" and my doctor said yes. Somehow I doubted that a little bit considering how trashed my body and mind feels and I'm sitting here with vibrating/tingling nerves in my feet and legs and loud ringing in my ears. I mean, it could be something else other than stuff that would be visible on a brain MRI, but I still thought hrmm.

I wanted to ask to see the pictures/the radiologist notes since it would be interesting. Not that it would do me any good since I wouldn't be able to interpret them myself, but just in case I suppose. Sadly I forgot. I think I'll try to get them sometime in the future.

I did end up with an appointment for a stress echocardiogram since I had tachycardia and hypertension last time I saw my doctor after running for a couple of minutes for my appointment. I told them this but my pulse wouldn't go down even after resting. This time everything was normal, which is why I asked for the stress test. On the appointment before this they also found that I have very high TPO ab >1300, but pretty much unaffected thyroid values (TSH was a little high when first testing but then within a week got back to a lower level by itself). I did get put on Synthroid just in case, which I've already taken for a month and have felt small improvements but things aren't good by any means.

So yeah, it's nice that it wasn't anything serious but I really didn't want to have a clear result this time since I'm longing to get better. Doesn't seem viable that it will happen anytime soon and I'm in my early thirties, without children and It's kinda sinking in that that won't be part of the picture for me in life as long as I don't get any answers in regards to my health. Feeling pretty gutted.

 

[hapl808]

Just a reminder to be careful with overdoing testing itself. Like you, I was so focused in my thirties that I was going to beat this and I refused to accept there would be any lifelong limitation. Ironically, that often led to pushing myself too much, getting too many tests (although I wisely turned down some), and single minded focus on getting better.

Now I long for the limited health of my 30's, as my 40's ended up taking a drastic turn for the worse.

Not trying to be a wet blanket, but just a happy reminder that things can always get worse, and unless Long Covid researchers figure something out, there likely isn't any 'cure' or even definitive diagnosis that you're going to find.

 

[lenora]

Hi space8, I'm glad that your MRI was OK....don't ever knock that. Do get a copy of both the MRI & report and show it to all doctors you go to. I had the clearance negated by a doctor who recognized something that wasn't right. This was many years ago when MRI's were first used, so perhaps the radiologist just wasn't on top of things.

You're young. When I was young, I entered research programs, used new meds, etc. I also kept on my vitamin regimen.....just do what you can but, as hapl808 says, bear in mind that we still don't have a cure. Still, do what you can, but don't go exercising in the wrong way. So many seem to be pulled down with that. Do walk and if that's OK, increase your distance. Eat well and behave yourself! Yours, Lenora

 

[space8]

Thank you @hapl808! And while I do understand where you're coming from, my situation was getting unbearable before booking the previous appointment. I've been slowly drowning for the last couple of years. So even finding out about having Hashimoto's was a big breakthrough and I wouldn't have found that out if I hadn't tried again. The Synthroid took the edge of some of the worst of it. So I'm actually really happy that I did muster up the courage to seek medical treatment again.

Finding out I had tachycardia and hypertension in response to exertion was also new and they only discovered that because I was late and had to run to the appointment. So that was the first time anyone examined my reaction to exertion/stress, which is why I believe a stress echocardiogram is a sensible next step. It might not show anything, but if that's how my body reacts to exertion I think it should be confirmed in my medical records.

My experience of giving up because you have seemingly impossible to understand symptoms is also not your everyday experience. I had very severe IBS for years and went through the exact rut I'm in now with my ME related symptoms. Having test upon test without ever finding anything, before boom finding out what was wrong and suddenly getting treatment for that thing. That saved my life. That's why I will keep trying if I can. I haven't had any tests done in regards to ME in the last decade and I haven't even got a formal diagnosis. If so, this will hopefully be my path to such a diagnosis!