I started having memory problems a few years ago. I went to my Doctor who did a test and referred me to a Consultant. I had lots more tests and had B12 and iron supplements but I still have the same issues. My memory difficulties has a big impact on my daily life yet there is very little help. There are things for older people with definite dementia and support for people with illnesses such as Parkinson's disease that affect memory but there is nothing for me. I have nobody to talk to who is going through what I am going through and I have no access to support services. I am in a weird limbo sort of place. Does anyone know where I could access any kind of help and support? My memory has a big impact on my daily life. I cannot remember who I have spoken to and I mix up everything. I ring my Mum everyday but I have to write this down otherwise I can ring her agin which is stressful for her. I think I have seen people when I have not and I forget when I have definitely seen people. It is awful. Headway have been lovely to me but I do not know whether I actually fit their criteria. What I would like is a letter that says this is why I cannot remember things - this is why I get muddled and overwhelmed. Is it ok to ask for this?
I think my Consultant said I had a virus but I am not 100% sure of this.
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ZippyBear
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Lyme’s Disease is not caused by a virus but a bacteria usually transmitted via static water. I know doctors tend to call everything a virus but if you ask them which one they get rather flummoxed.
I am wondering if you could have a consult with a neuropsychiatrist?
They should be able to recommend tests, or do assessments,, to know if your brain is injured or not. Brains get injured all sorts of ways. And, if not a brain injury, they may know what sort of doc you ought to see.
Ask Headway for some names and how you get a referral. Here in Canada once you have a name your gp has to refer if you ask them. I don't know how things are there.
It's tough when you don't have a diagnosis because basically you don't know where to go for help.
There is a blood test for Lyme's and other gram negative parasites. Often people with bi get told they should check out Lyme's.
It is also possible to have more than one thing at once.
Keep us posted on how you are doing. You need to see specialists to figure this out.
Oh, don't get weirded out about the psychiatrist part of neuro psychiatrist. It's a hold over from medical history, when they put stuff they could see like cuts and burns and breaks in the gp or surgery categories, and anything and every thing else in the psychiatry department. For example, the docs that study the impact of vitamins and minerals are ortho molecular psychiatrists. The neuro psychiatristaare experts on brains.
I have had an MRI - which is normal. I do have an mtbi (mild traumatic brain injury) - mild just meaning no skull cracking or any major physical stuff that can be seen. Cause, the symptoms sure are not mild...
Diagnosis made by a neuropsychiatrist based on clinical info. Which is why I am such a fan of them. (Until the diagnosis my family doc thought I was just being lazy - even though I couldn't walk properly, barfed when I tried to read, and tremored like mad ... the gp was an old guy who told me I had a concussion to start with - but in his medical school days they said concussions only last six months, so after 6 months I had to be faking it - because his training couldn't be wrong.... can you hear me laughing? ...)
Axonal shearing is a factor - if you look that up, it shows neurons between the white and grey matter of the brain get broken, and those don't come back - and this does not show on any MRI or CT because they are just too small. It does show on functional MRIs, but they don't do those except for research, from what I've been told, as they are just too expensive.
So, don't let anyone tell you you don't have a bi just because you have a normal MRI or CT.
Also, be aware the MRI won't necessarily be the proof you need for whoever - medical person, or yourself. A lot of people with bi's have nothing show up on the 'look at physical damage' tests that are currently available.
If you haven't seen a neuro psychiatrist, and you need that official 'this is a bi case' and don't have it, I highly recommend it.
Hi Zippy, I have been on a similar journey as you have now for about two years. It was my GP that burst my innocent view that I was coping ok considering my brain injury. Since then, I have noticed the effects of memory, or lack of. I'm not sure if these are real, or a case of "new car syndrome".
So far, every time I think I might be given an answer, it feels like being fobbed off with what things are not, or things that cannot be confirmed.
This does have an impact because I don't remember, everyday tasks can take days, or have to be started again because I forget I have started them, until I "happen" across them again. Other things just don't happen unless I am reminded that they should happen, something's I can't effectively explain why I didn't do something that I should.
The only example of the latter I can remember is informing the DWP of an increase in income. This has happened so many times, and each time I have to pay back the extra (fair enough), but I usually end up with a penalty on top for alleged failure to inform, although I am completely unaware of the change, therefore don't actually know that I should have told them. The only thing I can say is I have a brain injury, but I can't explain why that is a reason for my failure. As far as the DWP are concerned because I know what the problem is I should comply. Looking as I write this, it is clear as day what I should do, but the reality is it just doesn't.
Every essential is on my phone, from when meds are due, when to pay bills, what I want to watch on TV, this works, sort-of, but I don't carry the phone around so I can miss a reminder (ok, glue the phone to my side, problem solved! If only life was as simple), and you can only note so much in a day until you respond to an alarm more than you do in response to the alarm.
I have a whiteboard in the kitchen to try to catch ad-hoc things, assuming I look at it.
I stumble and fall at times, I go through a run of remembering to record this, then a run when I don't. I often have bumps and scrapes I haven't got a foggy where or how I got them. I have an alarm that is meant to help with this, but it seems to catch when I haven't actually fallen, and doesn't always catch when I do (in fact, I don't think it has actually gone off with a fall).
There are times that I get all dressed up with the idea of popping down to the social club for a pint, a couple of hours later, it is too late to go out, where that thought went, who knows?
I have yet another appointment tomorrow where I expect some answers,or maybe I don't?
Not really any help for you except I know how much it impacts on life. 🍀
Hi there - Perhaps search - or get someone to search for Nootropics - there are a wide range of supplements and differing therapies that have found to be of benefit - probably in other countries! For instance - see the posts of redlightsonthebrain.blog/di... and also vielight.com/ and have a look at Francisco Gonzalez-Lima on Youtube - he brought help through his brain research in 2001 and is mentions infrared and Methylene Blue as integral therapeutic components - and not issues re Tau entanglements etc also see reddit.com/r/Nootropics/ and search for dementia or alzheimers etc and see whats going on. There is a range of help mentioned. -
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