Undiagnosed permanent after affects of meningitis

[IndieRabbit]

Hi, I had bacterial meningitis when I was 6 months old and now I'm 27, finally joining the dots between my lifelong struggled with language and this illness.

I don't have an official diagnosis yet but I am fairly certain I have aphasia, I struggle with reading, writing and speaking. I struggle with sentence structure, I skip words, I say/write/read words incorrectly.

Otherwise I am very intelligent, at school I was the best at physics and maths during the first year of my A-levels. Physics fell out of favour during the second year when stuff got more wordy but I was still the best at mathematics.

I was doing maths at University recently but screwed up my final year when I faced a crippling struggle and anxiety to complete my dissertation. I didn't complete/submit my dissertation and ghosted my supervisor as my communication anxiety was preventing me from reaching out.

Its certainly not the first piece of work I've screwed up due to my struggle with writing but it is the most important. I also struggle with concentration when I'm stressed or feeling anxious. The concentration thing certainly doesn't work well in tandem with aphasia.

The good news is that knowing why I've struggled for so long has immediately relieved a lot of the anxiety as it no longer feels like I'm a failure. I've actually done remarkably well considering I've had no support with this disability. I'm going to contact my university and explain the situation and hopefully there will be a way for me to rectify the situation.

I recently became a father and my daughter is 9 months old today. So me and my partner were discussing our development milestones as this stuff is genetic and my meningitis came up naturally. Which led to some online searching and then my realisation that I've been struggling with a disability my entire life.

Its a very recent realisation and I have a GP appointment next week. I'm not expecting much until I have a referral which will probably take 12 months with how things are at the moment.

I want to tell/discuss my symptoms with my parents as I now have a lot of questions regarding my overall development as a child but I am worried about breaking the news to them since it's literally been there with signs all along.

I've looked online for stories similar to mine but I can't find anything. I'm looking for a bit of solidarity because I don't think my partner has fully realised how much of a negative impact this condition has had on me and I don't really want to discuss it with my friends yet.

Does anyone else have any similar experiences regarding delayed diagnosis of symptoms?

[ElephantLover2023]

Hi there,

I’m sorry for your struggles with this. I had bacterial Meningitis at the start of this year and have the exact same symptoms or struggles with sentence forming, speaking, and reading. Something i can’t find the words, I can start a sentence and then go blank and have no idea what I was talking about or it’s like my brain is going to past I skips words. Concentration is also a big thing for me. My job is very computer heavy and I’m struggling to do a full days work. I also have problems with processing hearing or understanding what something is telling me. So I don’t believe you’re alone on this 🙂

I’m currently waiting for an assessment with my local complex neurology centre, but I’m wondering what they will say. As the symptoms don’t manifest massively on the outside, I sometimes struggle with the idea that I’m putting it on which I know I’m not.

I hope your GP appointment can be begin to shed some clarity for you or at least put you in the right direction.

[IndieRabbit in reply to ElephantLover2023]

Hi,

I've seen you're previous posts but wasn't sure if my response would be very helpful since I don't have any helpful insights into dealing with my own symptoms. I've subconciously developed coping mechanisms throughout school but I don't think they've served me well in adulthood. Largely because my coping mechansims are to just avoid communicating where possible in an attempt to appear normal by hiding my problem.

I've been to university twice now, I did physics the first time around and dropped out in the second year. I think I struggled with some aspects of the course but also with trying to fit in, as it was my first time trying to make new friends as an adult with this condition. I definitely had some kind of depression which I've remained silent about.

My second go was mentioned in my initial post and as mentioned I did extremely well doing maths. I only had one written piece of work until it got towards the end of the degree and the actual writting part was small and that was a large part of it.

Between university I spent 3 years in retail scraping by, I wasn't eliglble for free education/training because I'd completed 2 years of an undergrad degree. To go back to university I actually paid the £9k in tution for the first year (over the 3 year course, £3k per year which I did by working alongside the degree) so student finance would cover the last 2 years.

I've been fortunate with work after university, it suits my skillset as I mostly work with numerical data but there are still things that I struggle with like emails and summarising findings of analysis. It has been a struggle more recently with being more tired than usual, I'm constantly forgetting deadlines in part due to poor memory and organisation but also the struggle to keep focus on what I'm doing. I have told work about my condition and they've been great so far, 2 of my managers have bachelors in psychology so have some understanding of the condtion and especially why I might be struggling more than usual at the moment but otherwise they've been happy with my previous work.

So overall I'm high functioning, but I still have major issues with communication anxiety which affects my ability to give presentations, talk to unfamiliar people especially groups in a professional environment, produce written work. Unless I learn better coping mechanisms these problems will continue to hold me back.

Even though your symptoms appear to be worse than mine I hope you have the advantage of not developing unhealthy coping mechanisms. I also hope that your symptoms have been gradually improving with time and if they have hopefully they continue to do so.

I'm looking at getting help for myself regarding these issues now. I replied to Hidekiji with some information about my GP appointment today which went quite well.

[Hidekiji]

Hey IndieRabbit!

I had VM last year, I am 37, married and father of two little boys.

Even trough I know we can't compare BM with VM, my recovery was terrible and without a good support for the first year, so I experienced a lot of the things you described without knowing what to do.

Concentration problems and anxiety ( plus sleeping problems and depression).

Things really started to change since the beginning of this year, when I got a great psychiatrist, which gave me a proper treatment for anxiety and concentration, then an endocrinologist, when I discovered that my testosterone was very low, so, got a treatment for that too.

At this point, for everything that I experienced, we are not sure if the problems I had were caused by my VM or if just made things worse to a point where everything became a problem.

After this, both doctors suggested me to workout again and return to my running training, helped even more.

Finally, I returned to my church, I am Christian but was not practicing it, return to my faith after this two years of struggle was very important to me, to have a place where we share our problems and support each other was the final step for me to really feel ok again.

So as I said, I know our cases are not the same, but I felt about sharing my experience with you hoping it can help you.

Let me know if I can help you in any way.

I will be praying for you and your family!

[IndieRabbit in reply to Hidekiji]

Thanks for your prayers, I'm not religious myself but I am looking for community and understanding.

I contacted my parents separately since my initial post. I think my Mum felt guilty for not putting 2 and 2 together and my Dad initially thought I could just be dyslexic. My Dad came around pretty quickly to accepting it was a bit more than dyslexia, I think some of my struggles with reading sounded familiar to him because he's dyslexic but I've never had any major issues with spelling and words that move as they say.

Before I could even tell my Mum about my permanent after effects she had started to tell me everything about my illness. She had brought the meningitis up just a few days ago because I had asked about how old I was when I started crawling, walking, etc. Nothing was late but she mentioned that the meningitis would have slowed some of the development. And before I called I had texted her in the morning asking when is a good time to call which isn't something I ever do, so I think she may have finally put 2 and 2 together after I sent that text.

I still don't really feel like it's understood though, but I think it's just really hard to describe the symptoms and not just because of the aphasia itself.

I had my first doctors appointment for the condition today. The GP was really good, he listened to everything I had to say even though I went way over the allotted time. He's agreed with everything I've said about my condition and had some his own good insights. Which is a relief because while its not an official diagnosis, I do feel some reassurance.

The next issue is that theres no neurophychologists in my region that deal with adults, my GP has tasked me with finding a neuropsychologist who may be able to with my specific condition/symptoms. I think it's very strange to request the patient to do this, especially in the UK but there aren't many within the immediate bordering regions and its been insightful too look these doctors up and see what they specialise in.

I'm just hoping that I can see someone I like within a reasonble time frame.