The loneliness of no diagnosis

[Dann2]

Another night, another post…

Tonight i was thinking about how on my own i feel. My continuous brain symptoms (such as numbness, ‘dead’ feelings, scorched sensations, ringing, hissing, plus visual glare and snow) leave me feeling desperately sad, and even more so because, after 20 years of seeking help, no doctor or neurologist has been able to detect what has happened or confidently give me a diagnosis to work with. I’m still having daily conversations with myself about how to describe these horrible sensations in my brain, what words are best to use to try and explain it to someone. So tedious and tiring to cope with.

I know that these things have been caused by a medication i was given when 18, but no one has come with me or trusted me when trying to explain this. And when nothing unusual is noticed on MRI scans, i’m just left dealing with it all by myself, knowing what has happened to me but not being able to recover from it or get any kind of treatment suggestions… apart from the usual antidepressants, which don’t help at all.

it feels really hard when i can’t connect with anyone who is going the through the same thing, with the same cause. i eventually just feel like a mad person, trying to explain to yet another health professional. (my GP has just reached a dead end and started getting inpatient with me.)

So, then i just give up trying to seek help, and any assertiveness i have turns to sadness again, which is pretty deep-rooted now.

Very unsure what to do next…

Thanks for reading. apologies if it doesn’t make any sense or is too much like self-indulgent waffle. 🙏🏻

[philcollis]

Hi Dann2,

I have a lot of empathy with your personal struggles. I have been living with Stroke for many years (since I was 17). I had the top of my skull removed during the 9 hour operation which they kept in a fridge for 5 months whilst I recovered and the brain swelling reduced, then they popped it back on. I had some really weird sensations after and still do now on occasion. I agree they can be difficult to describe, what I found useful are instead of trying to find a particular word I use a descriptive i.e. 'it felt like a crown of thorns pressing into my head', 'my ear feels like it's full of water', ' it's a stinging sensation that sort of comes and goes' etc. I always try to record it on paper or the memo on my phone just so I have a record of what happened and when. Like most neurological patients, I only get to see the consultant for an annual update which if I'm lucky, lasts for around an hour ( the other 8,765 hours in the year I have to 'self manage), so it's important for me to tell/show the right information during this limited time so I try to have a written record copy that I can give so it can be kept on my health record. The consultant may not have any answers to what has occured but at least I have informed him/her. My experience with GP's is they very rarely see or have the knowledge to provide neuro information, however I think if you could give them a record of what happens and when they might take more of an interest in possible appropriate referral. Alternatively it might be worth contacting organisations like the 'Neurological Alliance', 'Headway' etc. also check out social media platforms ....there may be other people that have similar experience and provide opportunities for 'discussion' etc. I hope this helps .......good luck ;-).

[Morinagirl]

I feel your pain.....my residual symptoms after a tbi are in my body rather than my brain as such and because the mri and blood tests haven't come up with a damaged hypothalamus or pituitary I have now been written off and they have refused to see me to discuss anything as they say they have done all they can. I have not seen a consultant once face to face and had to do everything over the telephone ! I can't help as such but want to let you know you are not alone in the lack of help and understanding on the part of the NHS

[Nafnaf87]

Good morning Dann

It takes a helluva long time to realise "they" really haven't got a clue and the only way forward comes from within. It is scary, sad and fun all at the same time!

Might have said before, I recently developed a friendship with a lady in our Headway group who has ABI rather than TBI so I have been on another learning curve, moreso because apart from the Brain Injury stuff she comes from a totally different background. Really women are from Venus and men from Mars - I have no interest in anything other than being helpful platonically but the traffic is one way. That said, as usual I try to ignore the negative and stuff I cannot do anything about or fix.

The only way forward is positive Dann my friend - take it on and enjoy yourself as best you can 🙂

Best wishes

Michael

[skydivesurvivor]

deep breath?, long low sigh?!! See , helps me greatly when the corners of my mouth twitch…. A big B-road , silly SMILE?!!! No? Oh well, come rant here whenever! We all listen cos we’ve experienced the same!!…see, ok a little smirk is ok I guess!! Go and have a coffee, please don’t swipe the smile away before u reply?!!! Keep safe!!

[Annabella1976]

I know how you feel since my stroke I feel so lonely night time is the worst I live with my mother and father and they have their own life hope things get better for you soon

[Dann2 in reply to Annabella1976]

I’m sorry to hear, Annabelle. Yes, nighttime can be a really lonely place. Thank you for your message, I hope things improve for you too.

[skydivesurvivor]

now cmon!! I say it’s tough but we support each other. Who needs the real world?!! One of many here who are trying to come to terms in where we find ourselves? Who needs reality? Here is much more fun, people who share the same experiences, difficulties. sMILE & carry on!! We need each other much more than anyone in the old world!! We understand, keep safe & come chat!!