To be worried about this even though doctors say no action needed ?

[inthedarkx]

So i had a mri to investigate some symptoms I've been having for a long time. I've never had a diagnosis. Symptoms started 10 years ago, I had my first mri 6 years ago which came back clear and I've now recently had a new mri 2 weeks ago as I've developed new symptoms. Got results from GP today which said my MRI came back fine apart from an incidental finding which was a pineal gland cyst of 3mm and no action required as it happens to a lot of people and it cant be causing my current symptoms as this type of cyst causes no symptoms unless it gets very very large.

The doctor said he will refer me to a neurologist to further investigate my symptoms. I am more worried than before now as I have something in my head that isn't supposed to be there and they are not concerned??

Am I being unreasonable to think this is more serious than they are treating it?

Anyone have or know of anyone who's got this type of cyst with symptoms but to be found unrelated to the cyst? If I didn't have symptoms I wouldn't be too worried but I do actually have symptoms??

My symptoms over the years have been

Excessive sweating ( just walking round a supermarket I'm sweating so bad)
My body overheats massively over little exertion
Eyelid twitches
Brain fog and memory loss
Slightly visual issues
Eyes constantly filled with 'bits'
I have constant adrenalin surges up through my chest which then makes the side if my mouth more either to one side or downwards
Forehead pressure and tinnitus
One sided head pain on occasion.
Joint pain

I had two set of blood tests the first set i was deficient in vitamin D and Folate which I took medication for and the second set was to follow up to see of mediation was increasing My vitamin D and Folate which they did as they increased so no more on that. Thyroid levels normal vitamin B12 normal iron levels normal.

Then I had this MRI

It's hard to stop worrying as they see this cyst as incidental but if that's the case why wasn't it picked up 6 years ago in my MRi then?

Anyone else had this and these symptoms and ever found a solution?
There is surgery for this cyst but it can be evasive

Any response would be much appreciated 👏

I will preface this by saying I am not a neurologist but I am a clinician and we always establish a timeline before deciding whether something is related to something. Your symptoms started 10 years ago, your MRI was clear 6 years ago. The cyst did not develop till much later on (which is why it wasn't picked up at the earlier MRI), ergo the cyst is unlikely to cause the symptoms.
Pineal gland's function is to produce melatonin. None of your symptoms seem melatonin-related.
I assume you have seen an optician and endocrinologist?

vitamin B12 normal iron levels normal

How normal?
You can still be hugely symptomatic at the lower end of the reference range. In fact B12 normal levels are set far lower in this country than others, it’s available otc to buy and self inject in Germany as it’s so important. Nice guidelines say ferritin under 30 should be treated but Drs can mark it normal as low as 15 if that’s within the labs reference range, it needs to be above 70 for healthy hair growth.
Vitamin D and folate deficiency can cause awful symptoms, again Vit D can be marked as normal as low as 50 but it needs to be above 70 for bone protection.

If you are in England you may be able to see the results figures, and the labs reference ranges, on the NHS app, or you could ask reception to print off the results so you have all the figures.

I’d focus on boosting everything up towards at least the middle range of the reference ranges and see if anything can improve your symptoms, brain fog, twitches and sweating can be caused by many of the above.

I was one point within “normal” for B12 and was told I was ok by the GP, even though I’d had to wait to get into the surgery propped against a pillar as I couldn’t stand unaided.
Private blood tests via Blue Horizon ( Medicheck are also good and do discounts) B12 injections and daily folic acid ( the two need each other) helped me get back on track. Look at Health Unlocked , different message boards for different conditions but always helpful.

@Catza thank you for your reply no ive not seen am optician recently and I've not seen an encrieneologist. None of this has been mentioned and the MRi came back as no action needed. My doctor said he would refer me to a neurologist due to my symptoms. Do you think I could do with seeing an encrieneologist. Its just very deliberating and then not knowing what it is

I'm not a doctor but I have multiple cysts on my pineal gland - I panicked when I first got that result, let me tell you!

Apparently though they are fairly common, especially in women. Overwhelmingly, they are non-symtomatic and do not grow. They first spotted mine in 2012. I had a separate MRI earlier this year and no change.

Hope they work out what is causing your symptoms though!

Sorry, I assumed you were seen by neuro already, hence the MRI. If you haven't, I'd definitely do that as the first port of call. But since the waiting times are ridiculously long, book to see an optician while you wait.
The only reason I am thinking endocrinology is adrenalin issues and sweatiness. But this is just a wild shot and I may be massively missing the mark here. The sensation you describing in your chest may not be strictly adrenalin related, it's just how you experience it. And sweatiness can sometimes be caused by neurological issues.
I am just a bit perplexed that in the last years you haven't had a single specialist referral. Not unheard of but still quite strange given the symptoms.

@Catza thank you'll ill Try the optitions. 6 years ago I was referred to general medicine at the hospital and they did 24 hour urine where you collect every bit of wee in a jug for 24 hours that came back normal so no issues with corsitol levels or anything like that. Then a mri was ordered and I literally had a consultation after the mri and he said all was clear with my brain so I was discharged back to my GP. I've then been told time and time again it's just anxiety but it really isn't as I generally don't have nothing to be anxious about anymore ( I was in an abusive marriage for 15 years starting from age 18 but left it 5 year ago) so I don't know what to do because my energy levels are poor. I asked the GP today whether it could he celiacs disease as I know that cam affect you neurologically and I do have acid reflux and also a rash on my back that just won't go away but because my blood are now normal he doesn't think it is

I have very similar symptoms OP but no diagnosis. After reading here and googling, many of my symptoms fit low Vit B12 but I can't get to see a GP to ask for a blood test. Anxiety can be caused by low vitamins and/or iron. What are your levels and the lab ranges?

https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/

EDIT - I believe low iron can cause tinnitus.

@YourMumDressesYouFunny
Thank you

I've just checked my ferritin levels in my app

It says mine is 23mul

The reference ranges are 15-150 so yes you could be right as mine seems ridiculously on the low side ???

@Notsoluckylucy thank you for sharing your experience. In sorry to hear you've had to go through the same worry !! I never eveb knew you could get multiple!! It's the fact that it shouldn't be there that bothers me x

@Pixiedust1234 thank you 😊
I'm sorry to hear your also suffering 😞 it's awful having symptoms and never getting an answer as to why isn't it ?
My B12 is actually on the higher end of normal but my iron is 23 and the reference ranges is 15-150 so it's the lower end of normal !!

Your iron is low, I think someone upthread has said its 70 for healthy hair growth.

I would suggest a good iron supplement (usual stuff- take with vit c/orange juice. No tea, coffee, chocolate within 2 hours either side etc) and see if any symptoms get less over a 3 month period. Mine get a bit better doing that but if I forget a few days I plummet.

I would also suggest a high potency b12 (based on your symptoms, check that link i gave) as there are two levels. One level looks at the total amount in your body, the second is for the usable amount. So your lab range could be for total but your usable could be 2. They need to test for both but they rarely do. Again see how you feel in 1 to 3 months. Keep a diary.

Functional vitamin B12 deficiency occurs when people have vitamin B12 deficiency symptoms yet appear to have normal vitamin B12 levels in their blood.
This can happen if there’s a problem with proteins that help transport vitamin B12 between bodily cells,

My ferritin is around 12 (as of April) and I don’t have all the same symptoms you do. Have you been checked for POTS? And hayfever? I feel like you may have several health issues going on at once as it’s been ten years…

To add to the b12 and iron above, I found that when I took COQ10 at the same time, my brain fog really lifted. I had b12 injections through the doctor, iron liquid (so much easier to stomach than tablets), COQ10, vitamin c, d, magnesium and another one I can't remember.
The symptoms I had were extreme fatigue and weariness, waking up tired, brain fog, memory loss, struggling to put sentences together, and migraines. I felt some way better after about 3 weeks on these and basically napping wherever possible. I can feel myself slipping back in the other direction again, so I need to dig out the vitamin box soon.

Hi @inthedarkx did you make any progress with your symptoms? I'm experiencing similar though complicated as had Covid 4 weeks ago and peri menopausal.

• excessive sweating - just folding up some washing and I have sweat running down my back...
• fatigue, wake up tired, worsens after any activity
• headache which worsens after doing anything
• brain fog

I do think I'm edging closer to actual menopause as I'm having more months where I don't ovulate so I think hormones are a part..

Fingers crossed blood tests show something straightforward eg Iron/B12 def.