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First time using a forum! Desperate for some advice - Carers UK Forum

First time using a forum! Desperate for some advice

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Hello, I am very new to all of this but I am just here for some much needed advice tbh. I care for my dad who has been diagnosed with severe depression and anxiety for about the last 3 - 4 years. It has really affected every aspect of his life. He used to be very outgoing, an outdoors person (surfed, travelled etc) and also an extremely happy positive person. Since being diagnosed with these illnesses 4 years ago he doesn't leave the house and barely speaks to anyone, has gained lots of weight etc, he has worked with our community health team as well as our local GP's. Altogether my dad has seen about 15 or so different doctors who have all put him on their own concoction of tablets/medication, not one of which has any positive effect on his health whatsoever. Infact sometimes quite the opposite. The list of medication he has been prescribed over the last few years really is crazy! Now, here's where my problem lies.. My dad is very concerned and quite adamant that his problems are a physical thing and not so much to do with his mental health. He experiences excruciating pain every day in his joints which prevent him altogether from doing any physical exercise (even walking for ten mins has him in awful pain in his legs and back) so this obviously doesn't help with his weight gain problem! He is constantly in a confused state. He says he can barely communicate sometimes cos his thought processes are so jumbled its almost impossible for him to concentrate on the simplest tasks. He also finds it near on impossible to make any form of decisions - as little as asking him what he wants for tea can get him confused and distressed (the answer to many, and even the simplest of questions, is often 'I don't know') We find it so difficult to progress in this situation as my dads current doctor will often say things to him like "you should go to the pub with your mates to cheer you up" (my dad can barely set foot outside the front door) and "why is it you think you don't feel any happiness from doing things you used to enjoy" (If my dad knew that he wouldn't be at the doctors) lol Basically, what I'm saying is I feel the doctors/medical professionals in general have no real clue about my dads situation which gives me little faith in them helping him. Also, all of my dads symptoms (although are very physical symptoms) are out down to anxiety and not given any real help. Can we go anywhere possibly privately or for a second opinion? Someone that would maybe take dads physical (debilitating) symptoms and not just out it all down to 'anxiety'?
Apologies for rambling on but have needed these questions answering for a very long time. My dad is only 52 and I am only 29 and I want my dad back :|
Stacey, that's horrible for you, and of course your dad.

May I ask if he's ever had a scan? Either a CT scan of his body, or better still, an MRI scan of his brain? That would show, hopefully, if there is any physical cause behind all this.

GPs are very reluctant to order scans as they cost money (CT is slightly cheaper than MRI, but shouldn't be used on the head, as it is radiation, unlike MRI which doesn't use X-rays so is safe on the brain), but if you push hard, you may get one ordered for him at the nearby hospital.

Alternatively, IF you can afford it, you could offer to go private maybe, and that might make your GP more amenable to ordering one. A private scan will cost, I suspect, at least £500....possibly more.

It's also possible to get a scan without involving the GP at all. Private health companies, such as Lifescan (which advertises on TV) (part of Spire Private Health - very reputable, used by large companies for their private health insurance for top staff etc), offer 'precautionary' scans for around the £500 to £700 mark (I'm a little out of date on this - you can check their website easily). However, as it's a CT scan, they won't do the brain.

I have myself used a private MRI company, which does do the brain, but it costs £1500! (If you think it's odd I do this, it's because I lost my husband to cancer in his fifties, and I won't let the same thing happen to me 'unexpectedly', so I do regular 'whole body screening', partly for my sake, partly to reassure my son).

Maybe, as a first step, however, you could persuade your dad's GP to refer him to a neurologist consultant at a hospital, who could go through all his symptoms, and see if they can come up with something.

Finally, of course, I'm wondering if something like stroke has affected him, and led to all the prolems he's having with his mind?? Or, more sadly, possibly something like early onset dementia?

Whatever happens, the pain he's in in his joints can't be continued without further investigation.

Sometimes it can take years to get an accurate diagnosis (let alone treatment), so it sounds like you've got to keep 'pushing'.
Hi Stacey
The one thing I notice that seems to be missing from your list of what has been tried is any form of counselling. The current nhs option is cbt which has mixed reviews.
For my son and his anxiety we use private counselling at £45 a session so we could help him choose someone he felt comfortable talking to, and have our pick of location and appointment times.
Maybe if Dad could talk to someone about his confusion, then his physical symptoms would become clearer?
Good luck
MrsA
Hi Stacey,

Sorry to read about your dad. Personally I would always recommend doing your own investigations into health problems; both my son and myself have had various problems over the years and we've had to go off the beaten track to sort them out. Unfortunately some doctors are very dismissive and will just write all sorts of problems off as being psychological instead of checking them out properly.

I get all sorts of odd aches and pains all over my body which don't appear to have any obvious cause and I have found acupuncture very helpful in dealing with these. It isn't everyone's cup of tea but it's helped me a lot so I do mention it to people when they are looking for things to try. Most acupuncturists can work with heat or finger pressure if the needles are a problem (I just keep my eyes shut but you honestly don't feel anything when they go in) and some can do home visits if getting him there might be a problem. I generally find that most complementary health type people help me simply because they listen and are non-judgemental and I leave feeling that someone has 'heard' what I need to say. I do think the NHS could save a fortune on tests if they improved some doctors bedside manner!

I've tried lots of different things over the years and have got a sort of arsenal of people and remedies that I use now for all sorts of situations so visits to the doctor are less frequent (which is good because I dread them!). It can take a lot of trail and error but can be helpful to some.

I hope you're able to find a way to help your dad through this (and I will also say that I find acupuncture very good for stress so you might find it helps you to help your dad if you see what I mean!).
Definitely ask for a scan to rule out any physical cause for the pain. When did this really start - can you pinpoint any event? Has dad had any massage? I've had various operations and every so often have a "sports" massage at home. This is done by a qualified therapist who knows what she can feel under the skin. A masseur might be able to help identify the root cause. I'm a practical person, would prefer to rule out physical problems before blaming it all on mental problems.
I would definitely agree that physical causes have to be ruled out first. It's all too easy for doctors to say 'oh, it's all in the mind' especially if there are 'mental symptoms'.

Diagnosing complex or rare disorders/conditions is seldom simple, and don't accept a 'simple' answer if you have a gut feeling this is not accurate.

Maybe the best kind of doc to have is one that thinks 'Hmm, this is a challenge!' and then you get them 'onside' as they try and solve the puzzle.

Sometimes it is up to 'chance'. A friend of mine's dad had a really critical condition, and was in hospital, no one could sort it....and by chance, a visiting doctor from the tropics strolled by and said ' I wonder if it's a fungal infection of the brain' (not common in the UK!) ....and lo and behold, that's what it was.

Similarly, another friend of mine had a young adult son with very, very 'inexplicable' symptoms that seemed like flu but weren't it went on for weeks, and finally started to get really, really bad ....anyway, she rushed him to the GP, he was pretty much 'collapsed' the GP thought 'uh-oh!' and they took him to A&E ...again, absolutely no idea what was at the heart of it but he was in a very bad way...then, again, the endocrinologist (hormone doctor!) came by and said 'Well, it's weird, but if he were middle aged I'd say it was Addison's disease'....and that's what it was (HIGHLY unusual in a young man). (Addison's is like diabetes of the adrenal glands - the body can't control how much adrenaline etc it produces)

I say all this simply to indicate that yes, sometimes an 'unusual' diagnosis is the accurate one.
I do hope you can get an accurate diagnosis for your dad, and then some effective treatment for it, or at least to mitigate the symptoms.
Thankyou all so so much for your replies! I've not heard so much sense spoken in a long time! This feels really positive to know that other people see where I'm coming from with this. Thankyou all again so much :)
Stacey, glad we were able to help, even if only in words! To my mind, the first thing to do is to create a kind of 'checklist' for your dad. Write down everything that is 'wrong' with him, preferably in a kind of timeline in terms of when it first started.

Then write down the 'timeline' of what doctors he's seen, what meds he's been on, (and what happened when he was) and so on.

Try and get a 'clear picture' in your head, and on paper, as to what has been going on since your dad first changed from that active outgoing man you described.

Then, I would say, the first 'check up' that he needs now is a scan. I really would insist on this. After all, when we see a person we can see their 'outside', and we can listen to what they describe their symptoms as, but there's a VAST 'hidden world' going on inside their bodies - it's like an iceberg. What they 'show' outside is only ten percent of what is going on 'inside'.

A scan can't show everything, obviously, but it can show huge amounts, and in very fine detail as well.

Hopefully, a scan will only 'rule out' a whole lot of stuff, but it might show indications of problems causing the symptoms.

Look, I'm going to say the 'C' words here. I don't want to scare you, but cancer does 'creep up' on people. I don't particularly think, from the way you've described things with him, that it sounds like cancer, and obviously all his doctors don't think so either - but a scan will show one way or the other, and that's that. If nothing else it should give you peace of mind on that score.

I also think it's well worth pursing the complementary medicine path - because they tend to think 'out of the box' compared with doctors, and they all think 'systemically' - ie, the whole body, and how one part can affect another, they see things more 'holistically' than orthodox doctors do/can. That said, I think one of the problems will be that complementary practioners do tend to be private I think, don't they?

I do wish you all the best and it's great your dad has you 'on side' for him at this difficult time.