Mystery Brain Disease

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Hi Everyone!

I'm 25 years old, male and I've been experiencing a steadily progressive/degenerative brain condition for over 3 and a half years now which has basically destroyed my life.

The main symptoms include steadily worsening cognitive impairments (especially in recall, processing speed), flat emotions, horrible head feelings (hard to explain), constant head pains (which arn't headaches and arn't relieved by regular painkillers), severe insomnia, vision issues and worsening tiredness. My brain basically feels like it's being attacked a lot of the time. Other, even more worrying symptoms include heart arrhythmias (PVCs, bigeminy), a heavily bloated abdomen and rapid weight loss (and possibly muscle loss).

This illness began in 2016 when I came back from a music festival. It was a sudden onset, starting with mild cold/flu symptoms and these brain impairments I speak of. The cold symptoms cleared up within just 1 week, but the brain symptoms have only gotten worse since, with the other symptoms slowly setting in as the years have went by. My condition has became so severe that I can no longer work, have given up most activities I once enjoyed, can barely socialise anymore, have lost all my prospects in life and constantly worry about my future if this disease isn't diagnosed and treated soon.

Nothing I've tried in terms of diet, exercise, suppliments, nootropics and medications have had zero effect on me. And doctors don't appear to be taking my condition too seriously. They ran the usual bunch of routine blood tests for diabetes, thyroid, cortisol, liver and kidneys and checked my iron and B12 levels but apparently found nothing. I also had a brain CT scan and got tested for Lyme disease, both of which also turned out to be negative.

Does anyone here have any ideas on what sort of condition this could be and how I could possibly get it diagnosed and treated? Thanks!

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  • Edited

    Just a suggestion of something else to be tested for.

    Did you kiss anyone at this festival, for the "Kissing disease" or Glandular fever, is caused by the Epstein-Barr virus which maybe matches the Flu like symptoms you incurred.

    Epstein-Barr virus has been found to be able to trigger Multiple Sclerosis.

    I have the same neurological symptoms you describe, I found when I went to stay in Spain for three months last year, my symptoms were hardly even noticeable, I read about MS that it comes and goes, hot sunny weather tends to put it into remission.

    I am waiting a Brain MRI myself, have been since last August. Beta Blockers triggered whatever went wrong with my nervous system.

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    • Posted

      No I didn't kiss anyone or interact with people that much at the festival. And as for the virus/bug I caught, it wasn't anything major and just like a common cold or mild flu, not something I would have went to see a doctor for. My symptoms have never fluctuated in any way either, they seem to be permanent and just steadily get worse with time and nothing I try does anything. I'd worry to think it could be MS but who knows.

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  • Posted

    hi, im 35 and femaleI have just been through the this myself and i do believe it's called a spiritual awakening please don't bother with doctors or speciallists they won't tell you anything all you need is natural healing or reiki it will make sense if you do some research on chakras and meditation.

    good luck. hope it helps

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    • Posted

      Hi, I'm sorry but this is appears to be a serious medical condition I have which needs urgent treatment, not something that's just in the mind. And I'm pretty sure that chakras or meditation will not cure my illness, any more than it will make someone's cancer or heart disease go away. But thanks anyway, and I'm glad to hear you got through your issues through natural healing and reiki.

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  • Posted

    Hi Sean,

    First question: what do you mean by "severe insomnia"? Can you please describe your symptoms concerning the insomnia as precisely as possible?

    Next question: how comes that with such severe symptoms, doctors did JUST make a CT and some blood tests? What about EEG, PSG, PET-Scan etc? Your brain needs to be tested fully, then you will have an answer!

    I can ask my sister for you, she is a med student and currently learning for her final exams. But I just can't think about an explanation why you had so poor medical testing up to now.

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    • Posted

      Hi. Well, with my insomnia I get episodes lasting a week where it's completely impossible to fall asleep. The episodes come and go at random. It often alternates on the days, so I sleep normally one night, then the next night I'm completely wide awake all night and so forth. I generally know when it's going to be one of these sleepless nights as soon as I lay down as I get these horrible, uncomfortable feelings in my head. I reckon the insomnia is just the result of whatever is happening in my brain during these times.

      My answer to your next question, doctors I've been seeing just arn't taking my condition seriously at all and are ignoring my concerns. I agree, they have done barely anything to investigate my condition. I've recently written an 8 page complaint letter to the NHS, stating everything wrong that the doctors are doing, my actual symptoms (not the one the doctors think I have) and to do something before it's too late.

      I suspect that a lazy, on-the-spot diagnosis of ME/CFS (at just one appointment with no tests!) by a previous GP is the reason doctors are doing so little for me. And the fact I'm waiting 6-8 months at a time to see a specialist, while the GPs I'm seeing do almost nothing during that time ("leave it to the specialists" as they say, while I'm left to deteriorate for half a year), is definitelly the biggest thing holding up investigation into my illness. I've basically got very little faith in the NHS anymore, and now things are only going to be worse with the coronavirus.

      If you could ask your sister (when she's not in the middle of her studies of course) that would be great, thanks!

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  • Posted

    Another Idea from me: Did you think about the possibility that it is "just" a migraine?

    I come to this because I thought that you emphasized the pain in your head, and the feeling of your head being attacked.

    Judging from your text, you don't seem to be cognitive impaired at all. 😉 So i really think this is nothing "serious" and not a degenerative disease. But these are just my thoughts and impressions from your text.

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    • Posted

      This is definitelly nothing to do with a migraine. With these "attacks" I get, I even don't get what you would generally call a headache. My head just feels horribly aggrivated in ways I find difficult to explain. It's like something is grabbing hold of my brain and choking it, making me feel so drained, weak and mentally impaired in the process. And besides these attacks I've been getting, my general symptoms have just been steaily worsening with time like I said.

      And the pains in my head I speak of arn't "headaches" and again nothing like a migraine. My entire brain region feels like it's burning and stinging a lot of the time, like my spinal fluid has turned into battery acid or something. Then there's these pains when I lay down at night, which feel as if my brain is pressing against the side opposite to the side my head is lying on.

      Yep, I don't seem impaired from my text, I go back and check all my grammer and spelling before I post anything up. I haven't actually lost any of my mental faculties, just that my brain is getting slower at processing things. I can still do most of everything that I used to, just that it takes so much time and effort that it's not worthwhile anymore. I have to type these comments and forum messages into word documents (this one took me 53 mins to write as I type) and have them saved in case a site logs me off for taking too long.

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  • Posted

    Dear Sean,

    if its really as bad as you write, then you'll definitely need an MRI, EEG and/or PSG and/or other tests.

    Your brain has to be checked in all aspects.

    I am so sorry for your pain and I really hope you get the doctors to test you.

    Maybe it's a kind of epilepsy? There are kinds going on with pain sensations, slowness of progressing etc.

    The thing is, it could be so many different things that over such a forum there is no diagnosis possible. You have to be checked so that the doctors can help you.

    Again, please don't be concerned about a neurodegenerative disease. These come with way more cognitive impairments and worsen fast. I'm sure there is a help or maybe even cure for your complaints.

    I wish you all the best.

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    • Posted

      Thanks. I'll be sure to see a GP about getting an MRI, EEG and PSG done. It's about time the doctors actually checked the part of my body where I'm having problems. No more diabetes or liver/kidney tests!

      And I'll try and make sure I'm not waiting as long as 6 or 8 months this time, a worsening condition should be a priority for doctors, especially knowing that the sooner it's treated, the better the prognosis is likely to be and the more treatment options there will be.

      I don't think this is a form of epilepsy at all, I havent had any seizures, issues with consciousness or psychiatric symptoms. I basically feel normal, besides the fact my brain is degenerating and being attacked. This seems to be some sort of post-viral or infectious disorder I've got.

      And yep, I'm not at all worried about it being any kind of neurodegenerative disease as there would be much more serious symptoms like the ones I mentioned with epilepsy. While I describe my illness as being degenerative, it only is in the same way an untreated brain tumor can be called degenerative. It's an illness which will only worsen and lead to further problems untill it's finally diagnosed, treated and hopefully cured.

      Hopefully I manage get a diagnosis and treatment soon. Once again, thanks!

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