6 replies to this topic

[SeanQHX1]

Hi everyone. For nearly 4 years now I've been battling a mystery, seemingly post-viral disease which appears to be attacking my brain and causing it to steadily deteriorate. As a result, I feel like my life is barely worth living anymore. I can no longer work, have given up just about all activities I once enjoyed, can barely socialise these days and have lost all my prospects.

 

My condition started off as a mild cold/flu bug, which I appeared to have caught while I was at a Download music festival back in 2016. I only noticed how impaired I was when I went into college (which I was 5 days away from completing) and tried to finish off my final essay, only to realise that I couldn't because my mind was suddenly completely blank and my brain just hurt trying to remember anything I learned at college. The virus/bug I caught went away by itself within 1 week (or at least the symptoms of it did), but the brain problems I have remained since.  

These brain problems I have are 24/7, barely flucuate in any way and have only been steadily getting worse since the onset, with further brain problems setting in over the years like worsening headaches, vision issues, severe insomnia, worsening anhedonia/flat emotions, other aspects of my memory and recall getting worse, horrible head feelings (hard to put into words), increasing tiredness and heart rhythm issues (bigeminy and SVT attacks). Everything I've tried in terms of food, activity, suppliments, nootropics and medications has had zero effect at all on my brain symptoms in the past years, felt like a waste of time and money and I've almost given up trying anything else as I just know that nothing will happen. I also kept a symptom diary for a while but it proved useless to me as nothing ever changed with my illness, other than it slowly worsening with time.

The only thing that's given me any relief from feeling so horrible all the time is taking high doses (30-60mg) of codeine or co-codamol. While it doesn't help me regain any brain function I've lost, it sort of numbs my brain so I don't feel it being attacked so much, or at least makes those nasty head feelings/sensations more tolerable so I can function somewhat and get through my day. I'm concerned about the fact I've been taking opioids daily for the past 2 years, and especially having to use them more frequently as my disease progresses, but just now I feel like it's my only option.

I'm suspecting that my condition could well even be some sort of autoimmune problem with me brain. The virus/bug I caught, despite just being a common cold/flu, could have perhaps triggered some autoimmune response in my brain during my sleep, on the night before that particular dreadful day at college. I imagine this could explain why my body seems to be completely healthy and in perfect working order, while my brain feels like it's under constant bombardment from something. Hopefully I can look further down this avenue and get tested for this.

I'd be interested to hear if anyone else on here is experiencing these symptoms or got any idea it what it could be. Anyway, thanks for reading this, I just hope I get to the bottom of this condition soon before it's too late.

[kurdishfella]

I have had something similar ever since I hit puberty feels like my whole body is quickly degenerating or my body is not producing things fast enough and I am low on everything.

[SeanQHX1]

I have had something similar ever since I hit puberty feels like my whole body is quickly degenerating or my body is not producing things fast enough and I am low on everything.

 

I'm so sorry to hear you've been deteriorating with these symptoms since puberty. This sounds pretty serious, I hope you have some good doctors doing what they can to get to the bottom of this, especially when you're young and could have your whole life back once you get treatment. Have you had tests done showing you are low on anything: iron, magnesium, B vitamins etc?

 

 

[kurdishfella]

I'm so sorry to hear you've been deteriorating with these symptoms since puberty. This sounds pretty serious, I hope you have some good doctors doing what they can to get to the bottom of this, especially when you're young and could have your whole life back once you get treatment. Have you had tests done showing you are low on anything: iron, magnesium, B vitamins etc?

It was probably before puberty too but it really got worse as I aged. I don't have any health diseases so I just assumed that my DNA is just made that way for some reason. I have done blood tests came back normal but I don't think it is related to vitamins, more like my DNA code or something is not working optimally. So I do not think it is a degeneration but more like my body just does not wanna produce the necessities like growth hormone and igf-1/2 etc and all other hormones. For some reason I am deficient in all these things like dopamine and such. So I figured if it does not wanna produce them I will just take drugs to help me. I know I am deficient in so many things but I don't know how to prove it.... like BDNF,NGF and the list goes on all the known hormones and neurotransmitters I'm very low on them and all other unknown things in the body. I probably sound cocky by saying this (like I am special) but I think I have multiple unknown mutations in my body in my DNA. I think I have low enzymes to produce things like convert vitamin D to activate form and transport it throughout the body and use it etc a example. Or absorb things.

 

 

Edited by kurdishfella, 18 March 2020 - 05:26 PM.

[SeanQHX1]

It was probably before puberty too but it really got worse as I aged. I don't have any health diseases so I just assumed that my DNA is just made that way for some reason. I have done blood tests came back normal but I don't think it is related to vitamins, more like my DNA code or something is not working optimally. So I do not think it is a degeneration but more like my body just does not wanna produce the necessities like growth hormone and igf-1/2 etc and all other hormones. For some reason I am deficient in all these things like dopamine and such. So I figured if it does not wanna produce them I will just take drugs to help me. I know I am deficient in so many things but I don't know how to prove it.... like BDNF,NGF and the list goes on all the known hormones and neurotransmitters I'm very low on them and all other unknown things in the body. I probably sound cocky by saying this (like I am special) but I think I have multiple unknown mutations in my body in my DNA. I think I have low enzymes to produce things like convert vitamin D to activate form and transport it throughout the body and use it etc a example. Or absorb things.

 

If you're symptoms just gradually set in (rather than a sudden/overnight onset) around puberty, with no sign of any disease or virus, perhaps there could be some metabolic issues need to be addressed, although I'm really not the best person to ask here, I was hoping someone else would have some answers.

 

If supplimenting the things you believe you're deficient in is actually relieving your symptoms, then it could be a case of your body not producing them. And if so, I do hope you manage to get tested and get to the bottom of what's causing these deficiences. But at least it's good news if things you are taking are having some effect on your symptoms. If your condition was just permenantly degrading with nothing having any effect, this would be much more worrying.

 

I reckon that what I have was orginally something that was easily treatable, some mild brain inflammation due to a virus/infection that could have been treated with some corticosteroids perhaps. For a year, the only symptom I had was some brain fog that lingered after the virus/bug I had. But as the doctors I was seeing at the time were so clueless, negligent and looking in the wrong places, this was missed and has probably led all these other health problems I have now because it's been left untreated for way too long.
 

Edited by SeanQHX1, 21 March 2020 - 10:42 PM.

[RYAN474]

Have you checked into hormones like thyroid, testosterone, IGF-1 (growth hormone)?  Even if levels within normal range, might be worth getting a Dr that will allow you to try thyroid, testosterone, etc to see if it helps feel better.  Consider reading fatigued to fantastic by Tietelbaum. 

 

I suspect my brain issues and steady decline were partly autoimmune as well. Do everything possible to reduce autoimmunity. First and foremost, I would suggest trying a strict carnivore diet which seems to reduce autoimmune symptoms powerfully for most, including myself. 

 

 

[kurdishfella]

Wanted to share this

 

 

Anomic aphasia occurring by itself may be caused by damage to almost anywhere in the left hemisphere and in some cases can be seen in instances of right hemisphere damage. ^[9] Anomia can be genetic or caused by damage to various parts of the parietal lobe or the temporal lobe of the brain by an accident or stroke, or a brain tumor.^[10] While anomic aphasia is primarily caused by structural lesions, they may also originate in Alzheimer's disease or other neurodegenerative diseases. ^[11]