Recently had my first MRI (awaiting results question)

[BrightCandle]

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.

When it comes to tests always get the raw results and what the original interpretation of them is. Pay for the CD for the images or whatever it takes. I learnt this lesson the hard way but doctors repeatedly lie about the results of tests, its very common to have abnormal results that they are saying are normal because they don't understand what is going on and they cover it up. This has happened to me repeatedly and its reported in the Long Covid patients community all the time. Always get the raw results, even if you can't interpret it yourself you can often get help from other members of the community who can.

 

[space8]

Thank you so much @lenora and @BrightCandle. I thought so myself. Somehow I found it hard to believe that they hadn't discovered the smallest bleep or spot of anything. Just knowing my brain. It feels fried. That doesn't have to translate to visible cues on an MRI but I do want to take part of the results. So thank you for encouraging me to access the results myself. That support means a lot. I can see how they would cover stuff up just because they don't want you to nag about something they've labelled as clinically insignificant. Perhaps they really didn't find a single thing but I want to see it with my own eyes.

I had another (supposedly clear) MRI of my liver years ago after finding increased echogenicity and dilated intrahepatic bile ducts on an ultrasound and never got to see those results either. That has nagged me a bit over the years, considering I have relatives with liver disease and they believe I have a genetic condition affecting my bile acid synthesis. So having visual cues in my liver area doesn't seem too far off. But who knows what they found that time ... Might have to try to access those as well while I'm at it.

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

Of course, Lenora. I'm endlessly grateful that I didn't have cancer in the brain or something like that because that would have been a nightmare in itself, so I'm happy, just bummed that it wasn't anything treatable like an adenoma. That could possibly have explained some of my hormonal issues (PCOS among other things). My doctor says that whatever's wrong with me is probably hormonal/endocrinological, but they don't understand why I have a bunch of hormones that are sometimes high and sometimes in range and everything is a bit messy with my results. I also had high levels of Uric Acid apparently. Both PCOS and high Uric Acid are related to obesity as far as I know but I have a BMI of around 19 but still all these metabolic/hormonal stuff going on.

Oh, what did they find on your MRI if you are willing to share? I agree that it's a good idea to see your results for yourself.

Thank you for your advice! I will try not to overdo it. I can work a bit these days and walk some distances but exercising is often too much. I'm also grateful that I'm not moderate/severe anymore because then those things were off the table as well. I just hate feeling this limited in my early thirties and don't look forward to getting older seeing my youth being spent mainly with aches and pains and sitting in bed. It's a tough pill to swallow. But yeah, if there's no cure there's no cure. I'm just trying to investigate the results I do have to date, but puzzling the pieces together have been proven difficult.

 

[lenora]

HI @space8.......When I mentioned exercise, I really meant doing too much of the weights. Men seem to get ill again when that is done to the level before illness or even after.

Also, I tried very hard well into my 60's. So go ahead.....research tools, new meds (which generally are too high of a dose in the beginning...very hard to get it right) but one finally took care of the pain I was suffering...it was so bad that I was bedbound. Eventually the doses were worked out and multiple patients have been helped, as I have been in one of its children. It was initially used for epilepsy. You never know!

If I were young again, I'd be out there trying. If it's too much for you, back off and tell your doctor. If possible, try to form a relationship with him....I can't tell you how much that helps. I recently lost my neurologist and it has been like losing a member of my family. We helped each other as he was very interested in learning about our illness also. No one can point you in the direction of a good doctor (well, another patient may), but try to find some common ground after you've been going for awhile. Most try, although I've had some that I wonder about what's being accepted in med schools today. Not many, though! Better health to you. Yours, Lenora

 

[space8]

Hi again @lenora, I took a little break from the forum for awhile, but I'm really sorry to hear about your neurologist. I've never had a close relationship to a doctor like that and I don't think I ever will. But finding one that feels like family must be really helpful. Even worse losing them since it's not exactly easy to find one who's empathetic.

I requested to see my scans and to see the radiologist notes and everything was de facto clear. I've been studying the scans myself and my pituitary does indeed look fine and dandy. There was only one image that had me confused. One from the top where something is bright white in my right sinus. The left one is black, but not the right one. Will attach the two imagery (where you can see the pituitary and the sinus pic):

Normal looking pituitary as far as I can tell ^
Though is that a buffalo hump on my neck?? It looks weird.

White glowing stuff in my right sinus? ^ (well, it's apparently called the maxillary antrum and the closest match I could find was various forms of sinusitis ... hrmm, I wasn't sick when doing the mri at least).

After searching for a bit the finding seems to be called something like "partial opacification of the maxillary antrum".

It was not mentioned in my report. I don't think it's necessarily very serious but it would've been nice the have it mentioned.

Thank you for the support on trying new things. It does feel like I'd like to try. It's too daunting to give up. But sometimes I suppose that's the only thing left to do unfortunately.

All the best!

 

[lenora]

Hello @space8. The next time you see your internist, if you're still concerned about the MRI, do ask for an explanation. Not an in-depth one, because I think something really important would have been found...but if you feel you need an answer, asking is the only way to do it. Yes, I could help you with some of it, but what if I'm wrong and you're worried for nothing. I wouldn't impose this on you.

I know people don't like me mentioning this, but at my age...what difference? We're prone to anxiety and perhaps that's some of what your brain is being exposed to. The first time I had it (after an extremely nasty and painful surgery...I have a few neurological diseases), I managed to get myself out of it by buying the Blue Book at AA (no, I've never been a drinker...just doesn't interest me. At most, extremely watered down wine is good enough). Anyway, the Blue Book helped me get through what was unknown to me at the time...anxiety/panic attacks. I was young and managed to restore my mental health.

The second time was more serious and was many, many years later. My neurologist put me on a mild drug, buspar, and it helped immensely.

Fast forward probably 15 years or more. I managed to contract shingles three times in a row....it really messes with your neurological system. Especially after the first round...which I had years earlier. This time nothing worked.

I went on a top tier drug that I wouldn't have wanted to when younger. But when you're much older, it makes sense. If not, I truly would have been in a mental hospital...and yes, I have been. For me, it wasn't a bad experience. No, I didn't want to be, but it was a safe place at that time. Other drugs would have been tried, but Xanax worked beautifully for me....ultra-low doses twice a day, plus lyrica I believe (which helps not just with pain but anxiety). A neurologist knows a lot about them.

I'm no longer chasing my ME as it is something I've come to terms with. I've had a lot of practice as I helped found many groups that weren't around at the time of the computer. We dealt with each other one on one and from around the world....so I learned. Being able to turn off my head has been a gift to me. Yours, Lenora

 

[space8]

Thank you for getting back @lenora!

I'm really glad you got help for your mental health issues. That's important to look over too. Though I actually feel the best emotionally I have in years (which doesn't mean perfect because it's still straining physically and mentally to be chronically ill). A few years back things got stormy though - and a lot of it was tied to my health situation. I also took "a pill when needed benzos" back then. I never liked it much since it made me more tired and made my body feel heavy. And if it's something I don't need it's stuff that makes me feel more like a sack of cement than I already do lol. It wasn't my cup of tea. I had a difficult time understanding why some people get addicted to them since they were never associated with any type of pleasure for me (not that they're taken to be pleasurable when used correctly but I hope you know what I mean!) But they're of course good for anxiety, just not super for me overall.

I have luckily felt some positive changes since starting Synthroid for my newly discovered autoimmune thyroid issues, so that's good at least. But I still feel incredibly ill from physical exertion. I'm mild, so I can work some, but it takes a toll. Though I've been keeping it up for long enough to know that it rarely leaves me permanently damaged as it does some (most) people with ME/CFS.

I had also come to terms with (likely) having ME/CFS and didn't seek any sort of treatment for years until my symptoms started changing, which was probably partly tied to my thyroid. But I have some other things wrong with me too that I haven't really been able to puzzle together, hence the suspicion that I might've had a pituitary tumor (it wasn't that bad of a theory since my hormones are all over the place). Then I have other test results come back elevated or low, but it's a really scattered clinical picture. I have bile issues, hormonal issues, elevated uric acid, thyroid issues etc. but it's all unfortunately too unspecific to get down to the nitty gritty of. That's the frustrating part.

Yeah, I don't know for now. I'm happy for the small positive changes after starting thyroid meds. I felt like I was seriously lacking dopamine before starting it. Lifting an arm could sometimes be impossible because my brain could think that it was logically a good thing to lift my arm but I would have zero drive to follow through - it's difficult to explain, but I have the motivation to lift my arms now! So that's ... good