Desperate for help! Any ideas? Constant brain for 3.5 years, tingling feet + hands, and lots more symptoms

Hi all, mid-20s male looking to see if anyone has had a similar story here or any ideas. 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.

CURRENT SYMPTOMS:

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.

PAST SYMPTOMS

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. Considering a full lyme test with Armin in Germany. 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.

Thanks

7 Replies

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  • Hello

    If I were you I'd look more into the white hyper intensities, just because of you being so young, they are more common in older people but do cause a lot of your symptoms. How is your blood pressure. I think I'd ask a few more questions about them. I don't know much about them, sorry but I don't think it's right they are there at your age.

    Just one other thing, you didn't mention if you were on any medication, it's just I had problems like you describe where my brain couldn't process what my eyes were seeing, I'd go all funny, start rocking, pins and needles .....same with sound but less so, I had brain MRI but all ok, neurologist put it down to chronic serotonin syndrome caused by long term use of 2 different medications which increase serotonin in the brain. Chronic serotonin syndrome not the same as acute serotonin syndrome, it's a slow build up reaction. Had to go through withdrawal and brain slowly recovering.....although it's been 8 months since withdrawing from medication.

    You could also maybe book an appointment with a chiropractor just to make sure there aren't any spine issues, trapping or pinching on your nerves. I have spine issues which cause pins n needles in arms and hands n sometimes feet but I'm 45 n that down to spine degeneration n a curve in spine!

    Don't give up on your search for answers, hopefully soon you will get there. I also have m.e and fibromyalgia and they took a while to get diagnosed. Try n stay positive, I know it's frustrating when things come back normal, you should be happy things are normal but to us who are ill it means it's another delay in finding what's wrong

    I'm just so sorry you are going through this so young

    Wishing you the best

    Jo

  • Thanks for replying Jo.

    Yes I thought the hyperintensities were odd. The lumbar puncture came back normal so the neuro said i didn't have MS, although i'm aware that you can have MS without oligoclonal bands. The neurologist deemed the hyperintensities insignificant and said all my symptoms were psychological at being diagnosed with haemochromatosis...but i wasn't diagnosed with haemo until 2.5 years after this all started!

    When this started my blood pressure was slightly high, pre-hypertension...but now it's generally around the 120/70 mark. What makes you ask about BP?

    No i'm not on any medication at all, nor was I before this all started in 2014.

    Pretty alarmed at the moment, as for the last month i've been waking up in the middle of the night and not been able to sleep again, and my memory is completely gone. I can't remember anything from yesterday.

    Will keep searching. Seeing my GP again next week as symptoms have taken a turn for the worse so may ask to see another neuro, although I don't hold much hope that he'll permit that.

    Thanks again

  • Hi,

    When I read your post I had to check that I hadnt wrote it. Im no Dr but you described me 30 yrs ago. I had a whiplash injury and started to have foggy brain, headaches, tingling sensation and feeling drained. My symptoms got worse and like you went from one Dr to the next. All said depression, well I knew I wasnt depressed. I started to get pain and it eventually became chronic. I finally came accross a post on Gogle and symtoms were the same, so I contacted a group.

    I was told to see a neurologist, he took a history and examined me. He diagnosed Fibromyalgia. If you have this you have pressure points that will be very painful. Fibromyalgia mimmics multiple sclerosis.

    I was treated better after that but still most Drs refused to believe it. These days Fibromyalgia is well known. M E is ery similar but less pain.

    I had chronic Fibromyalgia was hospitalised and in a wheelchair on very bad days for 8yrs. It started to get less and I forced my self to exercise as painful and dtaining as it was, it took me a year and not only was I walking and running I went back to work.

    Then 12 years a go I started with similar symptoms but burning sensations. My leg was on fire and I took photos. My GP said nothing to worry about take antihistamine. I went to 12 GPs as I moved home 4 times, all said depression and blood tests were normal. I gave it one last try and the GP listened, he told me he believed I had lyme disease, I went to the hospital for a test,, result normal. Convinced I had Lyme disrase my GP sent me to a private Dr ( now retired) blood test Elissa I had lyme Borrelia. My GP gave me treatment for 3 months, I felt better.

    I would see a Rheumatologist and if no luck I know there is a Lyme clininic in Heartfordshire, London and Beverly in Yorkshire, just Google.

    Good luck

  • My husband has/had a lot of these problems. Have a look at cavernoma.org.uk/ May not be your solution, but it is something else to rule out or investigate.

  • I was diagnosed with ME many years ago which is why I am responding.I was also told when I was very ill during a two month period (a toxicity to drugs)That projectile vomiting yellow Bile all over the house was due to anxiety(It caused more than anxiety I thought it was Coffee to start with so cut that out)Then it got worse the minute I took the medication I was projectiles all over the place it terrified my son who was not quite 6 am me it was certainly not anxiety in hindsight (it's easily said I should have gone to A & E it was a toxic reaction (The second time I had it I was unaware but it has had life changing results (You need to be aware of what your taking if you feel ill do not be fobbed off by anything I didn't understand the blood count that was 700?I also at the same time as the original illness ME told I had Suspicion Glandular Fever and Toxoplasmosis .At the moment I am very unwell and not getting any better just trying to soldier on and enjoy normal glimpses of life even if they do leave me in bed for a week!It exhausting going round In circles being referred to people who don't know what's wrong (or don't care!!)Trust your instincts this time when I came out of hospital i was getting really measures and throwing up quite often this has now stopped if I feel sick I have a tablet that I can only get prescribed (I keep some in with a young son I am used to it!)But just like you I have hot sweats then freezing as I have no thermostat!Other than extreme!Tingling and numbness (knocking everything over)I mean everything!!A new TV(the next one is insured!)My hair went brittle and it was really hard to get it back into condition I went from long thick curly thick hair (the only option was the chop)It's getting better I can't manage it long anyway.I recommend very cheap (anything with Moroccan oil)It's 99p the comditioner ,shampoo and oil?!Plus chopping it all off and starting again as a female I did not go for a crew cut but as short as possible.Its getting there slowly Don't over shampoo!And don't put shower gel in like I did !I came out in psoriasis all over I still have that(never ever had it before)My brain has reverted to that of a knat that's been swotted I get half way through the paper in bed and fall asleep!But I still read it I have forgotten pins lost cards etc...Given up reordering cards

  • They turn up under the bed very odd places!In the cupboard I found my Mums chopping board which was missing for a week in a filing cabinet with a lot of bank statements!!I just say it wasn't me!!

  • Did you ever get an answer to this? Your symptoms are almost exactly the same as mine. MRI CT scans all clear. I have concerns that I have Frobtal Temporal Dementia, as the symptoms fit this as well. Tried not to over think it but it scares me. Hoping you might have got an answer to this which i could investigate