GP doesn’t know what’s wrong with me

[reluctantOracle]

Hi,

went to the GP to ask about memory loss/lack of focus and whether it was related to my injury 5ish months ago. After some questions she told me that she doesn’t think it’s related to my concussion but i do definitely have some memory loss. Now i’m feeling scared more than anything. I couldn’t even remember what i did on saturday- i had to check my diary. Feeling lost and scared.

[pinkvision]

Hi, I had similar and ended up changing practices after 10 months of getting nowhere and being fobbed off over and over and over. New GP arranged all the referrals straight away and eventually I got diagnosed at a brain injury unit.

Just change asap. Remember to take someone with you to say how you have changed since your concussion.

[bonfire]

Hi Reluctant oracle

Sorry to hear about your concussion.

Keep some notes on how a ‘typical’ week is and ask for a referral to a neuropsychologist.

Try not to be scared, you’ll be ok.)

[AndrewT]

Dear reluctantOracle,

I understand your Fear, you poor guy/ girl- you don't say which (not that it matters). You could try going back, to your GP, once more- in the hope of a more sympathetic 'Ear'. Perhaps you could ask for a 'Referral', for some 'Memory Tests'. Don't be Worried, about being a Nuisance, in fact make sure that you are! Your Doctor needs, to understand, Just how WORRIED you are......Generously Speaking, she might not have Understood this.

Is there perhaps another Doctor, in the practice, that you attend. If so maybe you could see him, or her, instead. My GP Surgery has about three, maybe four, Doctors available. In my case, my Doctor is 'Lovely' however, this has only been the case, since I changed Surgeries myself.

Do you have a 'friendly' Hospital Consultant, that you, Might be able to 'Talk' to? If so it might be a good idea, to speak to, Him/ Her.

You can try, to find, a new GP yourself although this might be Tricky, it IS possible though...I managed it, mind you I had Moved. If all else fails write to, your local, PCT and ask then to find you a new Doctor. By All means DO explain 'why', you want to change, remembering to emphasise your Fears.

I know that 'Everyone' echoes my Good Wishes reluctantOracle, an odd but Great name. Can I ask how you came 'by it' please?

AndrewT

[cat3]

Oracle, please don't allow your GPs lack of expertise in brain injury issues to mess with your head. Family doctors have limited experience and knowledge in the field. It's we as brain injury survivors, and the neuro specialists, who really understand the realities.

Tell your GP (or another on the practice) you need to see a neuro specialist. If necessary, arm yourself with accurate information on post concussion syndrome by phoning Headway's helpline (0808 800 2244) to speak with an advisor and to ask for the relevant printouts.

There's a very good chance your head injury is responsible for your memory/confusion issues as concussion can have more lasting effects than commonly believed. Please phone the helpline for some good advice and reassurance.

Good luck m'dear and try not to worry ; it's still early days. Cat x

[Hidden]

Hi

I echo everyone else's views don't take just one GPS opinion. I've had two issues where I was misdiagnosed (fobbed off) but after some persistence got to the bottom of it.

I'm also interested in your user name. I use a computer system at work called Oracle and some days feel very reluctant to use it. 😬

Rachel x

[lcd8]

Hi there. As others have said you have to remember the GPs are 'general' practitioners. Therefore they know a lot of conditions but lack in-depth knowledge about them. Specialists on the other hand know about only a few conditions but study them in-depth. My BI was misdiagnosed by my GP for years. She thought I had migraine. My advice would be to seek advice from a specialist. Good luck.

[sospan]

The problem with head injuries is that the symptoms match many other health issues.

Not being able to remember what you did on a specific day is actually quite normal. If you ask any able bodied person in a street what they did 5-6 days previously unless it was something remarkable they would have to think very hard.

Every day we "forget" things; where we put the keys, where we parked the car, birthdays an anniversaries, locking the front etc. Quite often the stress of not knowing why you have not remembered something can be very stressful for some people.

"memory loss" can feel exaggerated by many factors stress, lack of sleep, medications, simple vitamin deficiency like b12, over / under active thyroid, medication and of course a head injury and the most common ageing

In reality a head injury develops more than 1 symptom. Memory loss is just one indicator of a head injury and your GP has probably asked a number of diagnostic questions which caused them to push a head injury to the background.

Whilst not directed at you, a problem for GP is that people develop symptoms to match a specific health condition e.g. if a woman is pregnant they have morning sickness. It is quite common with head injuries that people develop symptoms to match what they believe people with head injuries should have.

Being only "5ish" months into a head injury then it is still quite early. The other thing to take into account is that there is no treatment as such for memory loss. So whilst a diagnosis may give you some comfort it won't actually fix any underlying problems.

As mentioned above I would try the Headway phone number or even the local MIND if you become overly concerned.

All the best

[reluctantOracle in reply to sospan]

that’s the thing- i checked my diary and i DID do something remarkable on saturday!! i went to see one of my fav singers live, and the fact i couldn’t remember is pretty upsetting. i am calmer now, i posted during the after-appointment panic so didn’t fully contextualise the experience, apologies!!

there are other symptoms but again i think you’re right and i definitely have to wait for a referral to a neurologist- i can’t start spiralling and freaking myself out with worst case scenarios!!

[WinB]

Hi Reluctant O, Stress wont help and others have said ask for a referral to a hospital an X Ray will take what 5/10 mins , and put mind at ease . As others have said, I agree. If worried see Doc and get it sorted once and for all ..You must know it makes sense as you are asking on here and you must be worried so get rid of worries and see Doc again. Anything to do with head should be sorted ..Now get appointment to see Doc and good luck xxxx

[nano2]

Please ask your GP to refer you to Neurologist for further tests. My Daughter recently diagnosed with short term memory loss. She has been on strong medication which we thought was causing it turns out not to be the case. She has brain scaring where it affects her memory. So as to what’s caused it the Neuroligist is unsure it could be infection of some kind or even a crash she had a couple of years ago. GP won’t know what’s wrong with you I f they don’t refer or send you for MRI. Wish you Good Luck In getting a Diagnosis.

[WinB]

Reluctant Oracle, Did you ask for to be referred as of yet ? Dont be fobbed off by Doc when it comes to brain issues ..Go see her again or by phone tell her you need to see someone . Now get phoning or a visit again xxxx

[Merl1n]

I must say, from experience, your situation is not uncommon. As a child I was involved in a MVA. Went to see the dr 'Ohh, bump on the head, you'll be OK...' Now this was back in the 70's and other than xrays, scans were minimal. But things weren't OK, the dr had made a diagnosis and every other dr referred back to that diagnosis. I was having odd symptoms/sensations which were put down to everything from growing pains to hypochondria ie 'There's nothing wrong, it's all in your head...'. Little did I know just how true this was, it was all in my head, physically. Some 20 yrs later I'm driving down the road and the lights went out, I couldn't see. VERY scary. Again went to the dr who sent me for a CT scan just to show there was nothing wrong.

Well, the scans showed there was something wrong, very wrong and I was sent to a neurologist. His opinion was 'Wait and Watch' and for a dr who is not dealing with such symptoms 'Wait and Watch' is simple. The reality of it all is NOT that simple. Neurologists work on theory, and the 'Wait and Watch' theory may well work for individuals who are having intermittent symptoms but when they are constant waiting can only lead to a worsening outcome. So, as per dr's recommendation I'm waiting, then one night this headache gets really bad, I start vomiting and my wife calls an ambulance. At the hospital the neurosurgeons say "Why didn't you come and see us sooner?" Because to see them I needed a referral from the dr, the dr who sent me to the neurologist who says 'Wait and Watch'. On the neurosurgeons recommendation I was admitted and within 12hrs I was in surgery having a craniotomy. This was in 1996

I've been on this medical (Not so) merry-go-round ever since and so far have required 6 neurosurgical procedures with more to come (or so I've been told). I must admit I do often wonder if I'd been more persistent right from the start if the outcome could have been more positive as I'm now deemed to be 'Totally and permanently disabled'.

As others here have recommended, don't be fobbed off by your dr, get a referral to a neurologist or a neurosurgeon. Your brain is the body's computer system and it controls everything, a small change can have a MASSIVE impact. Look, the neurologist may say exactly the same thing but if you follow through and get it seen by a medical specialist then you have done as much as you possibly can and in years to come you may not have as many 'What if...?' questions as I have had to deal with.

Some Dr's make out that they 'know-it-all', they don't. Get it followed up by a specialist, someone who has a comprehensive knowledge of the brain.

[Sound_system]

Maybe ask your GP for a Neuropsychology referral.

[Coralann]

Hi. I echo your thoughts. I to have discovered memory loss and so scared I am getting dementia. My gp is quite sympathetic as been with me since day one of my sah. She is now referring me to a memory clinic. I suggest you ask for the same which can help I am sure

[Adviseneeded]

Hiya,

Keep up with that diary, it is a scarry thing to not remember where you've been , what you've done etc, but first of all, take a deep breath in slowly, then blow it out, relax is the key, the more you try to remember, you'll get more confused, frustrated, anioxius , so blow that out. Try your hardest to relax, listen to music off internet for relaxation, there's loads, some might stress you out, so find what you really enjoy. I love spirit flutes, and just loose yourself for an hour. I keep a diary, when I'm stressed everything is up in the air, I'd say everything was going wrong, that's just the brain over thinking, stressing you further, which will make your memory worse. So chill my chicken 🤗 give yourself a little time. The have a look in your diary, and don't get upset if you can't remember doing what you did. Think of it not as a bad thing, but a positive, what an adventure to see what you've done. Positive mental attitude, is amazing for the head and heart. I do hope this will help, much love, and try and relax, this will help you, hopefully ❤️

[chuncho]

In Italy we have a GP too provided by the NHS and I had the same experience: he understood only partially my real feeling of impairment. This is why I am going privately to see a neurologist now.

[Vixmas]

I would recommend asking your GP for a refferal to a neurological psychologist.

GPs are awesome, but not experts in brain injury.

Also, contact Headway to see if they can recommend a way to having your memory /cognition tested.

Different areas seem to have different resources for Brain Injury. My area has very little and I had to travel quite some way to have mine tested.

All the best of luck.