Any ideas ? Desperate for help
Hi all, mid-20s male looking to see if anyone has had a similar story here. It’s been 3.5 years since I got very ill and no doctors seem to have an answer.
January 2014 – woke up feeling slightly ‘off’ on an otherwise normal day, put it down to tiredness and went about my day. Next day, slightly more intense, started struggling more with cognition and memory. Day 3 it was really noticeable. My head felt totally foggy and as if my brain couldn’t process what my eyes were seeing.
This lasted about a week and then it went away over a few day period. I had about 5-7 days of total normality before it hit again.
The onset the second time was the same – crept up over a 3-day period. Except this time, on the 3rd day I went to get some lunch and near-enough blacked out. In hindsight it felt like a viral attack of some sort. I grabbed hold of the counter and managed to keep my eyes open and stay stood up. Again, in hindsight now I wish I’d just let my body drop to the floor and get taken to hospital. The brain fog was unbelievably intense and my scalp and feet were tingling. I didn’t think at this point that 3.5 years later I’d still be battling, and deteriorating.
I had been going through a slightly stressful time for the few months prior to this, but at the time this happened all this stress had passed and I felt so in control of it all so I don’t get how it could be related. Was it just coincidence?
Anyway, here’s what I’m up against. Bear in mind the constant 24/7 brain fog and tingling in my feet (which has now progressed across my body) have never ever left. Not even for a second. Apparently when this first came on I was extremely pale and my eyes were totally glazed over. I remember for the first few months I would drag myself to work and then get straight to bed when I got home. It seemed to ‘settle in’ after a few months though.
1: Brain Fog (24/7) & cognitive impairment including:
- Immediate and short-term memory loss (long-term memory not badly affected). E.g: Forgetting names of new people, large chunks of recent conversations, reading a page of a book needs reading over & over in order to absorb info etc.
- Difficulty solving problems & concentrating
- Difficulty finding/writing/typing/spelling/saying the right words or thinking logically and clearly
- Not 'blurred' vision as such but a feeling that my brain can't process what my eyes are seeing quickly. (Had eyes tested and all fine).
2: Fatigue (not totally chronic, although has gotten worse in last few months). Can exercise and run without any problem although now brain fog is generally worse the next day. At first (2014-2015/6) it improved energy/fog the next day. Relatively active, work full time (just about) and can go out and do things on evenings and weekends.
3: 'Floaters' in eyes in bright light & general light sensitivity. Also can be sensitive to sudden noise/sounds.
4: Slow but daily diffuse hair loss & v thinning/easily broken hair since April 2015. Definitely related to symptoms not genetic. Have always had very thick hair.
5: Continuous tingling soles of feet (like electric shock) which has now spread to calves, thighs, and has given me stiff knees. Also now in hands and right hand joints have gone a bit stiff. Feels almost arthritic. Sometimes thighs burn. When I put my hands on them when they’re like this can really feel the heat.
6: Unrefreshing sleep, always have blue/green bags under and around my eyes.
7: Low libido
8: Some mild, but intermittent heart/chest pains, lasts about a week every 4 months or so.
A couple of other symptoms have come and gone since brain fog first presented:
1. 7-10 days of headaches behind eyes, not had headaches since (March 2014).
2. Vivid nightly dreams (Feb-March 2014). These have reappeared in the last few months.
3. Feeling of highly increased brain fog and nausea 1-2 hours after eating, never sick just burped gas. When this feeling came on I just sat down and passed out usually. This happened 10 times or so but haven’t had it since (Sept-Oct 2014).
Blood Tests/Work Done
- GP two full bloodworks done to check Liver and Kidneys, thyroid etc. All fine except Low Vit D. which was corrected but no change. I saw 5 or 6 GPs who all said mood. I feel absolutely fine re: mood/anxiety/depression, just v frustrated that I don’t have any answers or direction. The last one I saw a year ago or so mentioned ME so might go back and ask for a referral. Don’t know why but it doesn’t feel like ME though, the fatigue isn’t the main issue, it’s the constant brain fog and tingling/burning.
- MRI scan – showed ‘5-7 tiny white hyperintensities on cerebellum’ but these were deemed insignificant by neurologist. Sent for a lumbar puncture anyway which came back normal and never heard from them again.
- Full thyroid panel – nothing significant, all in range. Low Iodine
and selenium though – tried supplementing Iodine
but got a terrible reaction. Loads of energy but brain fog was awful and headaches so I stopped. Was around this time hairloss started.
- Found a functional doc and had adrenal stress profile (which came back normal) and nutritional evaluation – fine except low essential amino acids.
- Had B12, Folate checked – fine.
- Lyme disease (ELISA I think, not sure had it done privately) – negative
- Ferritin – was at 717, by chance had this checked privately and also turns out I have haemochromatosis. Had ferritin reduced to around 50 and transferrin saturation down to around 35% - no change in symptoms. If anything, I feel worse. Tingling really progressed up through body during ‘de-ironing’ phase. Haven’t had venesection now since Feb 2017.
Any help or direction would be really useful. Genuinely feels like my body is attacking itself all the time, especially the electric shock feeling in my legs and hands and the brain fog - the brain fog feeling couldn't get much worse but i've noticed my memory is seriously going. Genuinely do not know where to look.