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AIBU to be stern with the doctor?

(155 Posts)
leftturn Mon 17-Feb-20 20:18:21

I apologise this is going to be long - I have been dealing with various issues for a long long time (over 12 years) and they haven’t improved.

I have
-Weak joints in my ankles and wrists
-Flat feet
-Huge calves
-Random spasms in my muscles
-Right side numbness of my face
-My tongue is often numb on my right side
-Pressure behind right eye
-Extreme tiredness
-Pins and needles down right arm
-Pain in my joints
-Feeling dizzy which is made better by laying down and when laying down feel like I have all the energy in the word
-A feeing like my leg is asleep but is in the stage of waking up if that makes sense so tingling
-my hands curling up on themselves

So far

-It taken 5 years to be told I had gout, this was after being told for those 5 years I was too young for it and now everything is because of gout
-I have damage to the discs of my spine but I was told everyone does so I shouldn’t worry?
-I have had a nerve function test after I pushed to be told I have chronic cervical radiculopathy but not to worry because again everyone has a bit of that and doesn’t say they are in pain
-vitamin d deficiency but again not to worry as everyone has that

I have had basic tests and I don’t have the rh factor so it’s not arthritis and been fobbed off basically that it’s gout but I don’t dispute that I do have gout and get it in my big toe when I eat tomatoes/marmite and meat which I don’t eat any more.

Sorry for the length but AIBU to say I want a specific answer and won’t have any more bloody tests which include checking my uric acid levels any more until I have an answer? This has stolen 12 years of my life and I feel like if I was a man this would of been fixed or had a solution already

Winkywoop Mon 17-Feb-20 20:20:25

MS? Have you had a brain MRI?

Migraine?

CrohnicallyEarly Mon 17-Feb-20 20:21:44

If I were you I’d push for a neurologist assessment. I have a lot of those symptoms due to my MS. A friend has some of them too and she has Functional Neurological Disorder and fibromyalgia. In particular the different sensations you mention (numbness, pins and needles, the feeling in your leg) make me think nerve damage somewhere, if it’s not peripheral neuropathy it could be something central nervous system.

Pippa12 Mon 17-Feb-20 20:22:53

It sounds like they don’t know what’s causing your issues tho (other than gout) so how is having no further tests going to help you?

DarningKittens Mon 17-Feb-20 20:22:52

Vasculitis? You need to see a rheumatologist
It can cause all of that

leftturn Mon 17-Feb-20 20:27:21

I’ve had MRI’s but apparently shows no damage, I had a test for optic neuritis for my eye but came back negative.

I am not sure what I need to ask for because so far tests have come back negative for most things and that’s when I think I’m a fraud and there’s nothing wrong with me and feel bad I am taking up time from the doctors.
However I couldn’t use my arm for 6 months as it was so weak and I couldn’t move it higher than straight out in front of me and I didn’t see a doctor for fear they would say there was nothing wrong with me.

My foot is currently in a weird state and the outer part of my foot is spasming/cramping and trying to curl inwards if that makes sense but I’ve just strapped it up and got on with it for fear the doctors think I’m making it up

leftturn Mon 17-Feb-20 20:29:57

Sorry the no tests mean I am happy to have tests just not one that are gout specific if that makes sense.

Elieza Mon 17-Feb-20 20:39:36

You need to tell the doctors all your symptoms. That way they have the full picture and can offer more tests or treatment. Weird it’s all down one side of the body. But perhaps that will mean something to them.
Good luck and I hope you find it’s something easy to fix so you can get your life back flowers

LaurieFairyCake Mon 17-Feb-20 20:40:21

I have sciatica and when it's bad my foot curls up too - it's really annoying/painful/stops me sleeping

I've no idea if this has helped but for the last 3 weeks I've consistently had magnesium baths, taken magnesium supplements and it's stopped for now

Lunde Mon 17-Feb-20 20:45:01

Have you been assessed for polymyalgia rheumatica - which often occurs together with temporal arteritis
www.arthritis.org/diseases/polymyalgia-rheumatica
www.nhs.uk/conditions/temporal-arteritis/

Or possibly Ehlers Danlos syndrome
www.nhs.uk/conditions/ehlers-danlos-syndromes/

or Fibromyalgia
www.nhs.uk/conditions/fibromyalgia/symptoms/

These symptoms frequently do not appear to be taken seriously by doctors. Ihad a similar experience to you - diagnosed with gout in 2002 and then fibro in 2003. It wasn't until 2015 and a serious life changing accident later that EDS was added to my list.

Kwkwjwkek Mon 17-Feb-20 20:48:47

Can you afford to go private ?

itallworkedoutok Mon 17-Feb-20 20:49:16

This sounds like it could be EDS, then Pots for the dizziness when laying and fibromyalgia these conditions are all related. I got diagnosed relatively easy though rheumatology

DreamingofSunshine Mon 17-Feb-20 20:49:41

The dizzy when standing but feeling great lying down could be Postural Orthostatic Tachycardia Syndrome, which can be linked to hypermobility type Ehlers danlos syndrome, again linking to weak joints/ flat feet. I'd ask for a referral to a rheumatologist.

AuntieDolly Mon 17-Feb-20 20:52:36

https://www.nhs.uk/conditions/charcot-marie-tooth-disease/

LittleMsM Mon 17-Feb-20 20:52:55

Have you been checked for Parkinson's? I don't know your age but under 50 could still be YOPD.

itwaseverthus Mon 17-Feb-20 21:11:26

Have you had your Vitamin B12 and folate levels checked?

BudgieHammockBananaSmuggler Mon 17-Feb-20 21:13:50

Speaking harshly, but I guess the good news is you’ve had this condition for 12 years and you are still alive. And if it was an identifiable specific neurological or rheumatological or whatever condition it would probably have been diagnosed by now. So by exclusion, it will be fibromyalgia or POTS or EDS or functional neurological disorder or any of the other similar conditions that have already been mentioned. It is doubtful that any further tests are going to find anything but I guess its the uncertainty and associated stress that plays on your mind and quite possibly worsens your symptoms. Probably a neurologist with a specialist interest in functional disorders will be most helpful. And have you had any counselling to cope with your stress?

leftturn Mon 17-Feb-20 21:16:19

I thought you would all be more helpful than the doctors, I have seen rheumatologists for years but they are the ones hyper focused on the gout and have declared everyone else has these issues which makes me feel either I’m making it up or people have better tolerance than I do.

I am not hyper mobile enough to have Ehlers-Danlos syndromes as while my ankles and wrists give out they are not more mobile infact they seem to be getting less stretchy and more stiff and harder to move.

I have no idea what tests to ask for and I am having really bad anxiety over been seen as a time waster or not sick enough.

I knocked my arm and it went into spam and I couldn’t use it while I was at work and just stopped using it and it wasn’t until a coworker asked why I was doing things one handed I explained my arm wasn’t working but would soon that she said it wasn’t normal.

MyuMe Mon 17-Feb-20 21:17:23

So you want to be stern with a doctor for failing to put a label on a constellation of symptoms that may or may not be connected?

Has anyone who has named the above disorders got a medical degree?

Racmactac Mon 17-Feb-20 21:21:38

My partner suffered from really bad gout several times and he also was told he is highly vitamin d deficient.
After 12 months of taking high levels of vit d. Walking lots and loosing weight he hasn't had any gout and the tirednesss symptoms have vanished.
Start taking loads and loads of vit d

RedLemon Mon 17-Feb-20 21:22:07

Get someone else to see you- neurologist, rheumatologist, even another GP.

I say this as a GP myself- sometimes when you’ve been seeing a patient for lots of “undifferentiated “ issues through a number of years you can’t see the wood for the trees. Symptoms that seemed vague at first may become more definite or clear cut over time or the clinical picture may change without me necessarily being made aware of new or emerging aspects by the patient.

I’m not trying to make excuses-or maybe I am! But if that same patient comes to me as their “second opinion” doctor I can take a bigger picture view, because the whole story is there in its entirety, and that may allow me to see something that I wouldn’t see as the doctor who’s been on the journey with them from the start.

So in summary, it may be time for a fresh set of eyes.

goodnessidontknow Mon 17-Feb-20 21:22:29

Vitamin D and Magnesium deficiency could account for a lot of what you describe. Levels considered within range by the GP can still be low enough in some cases to be symptomatic.

It can't do any harm to find out what your last results actually were and do some reading up about vitamin deficiency and how to boost your system effectively.

leftturn Mon 17-Feb-20 21:25:04

I’ve basically adapted my life to working out ways to deal with them but again when I meet people who ask me why I do things they tell me it’s not normal.

I basically get up go to work and come home and that’s all the energy I have. I now do less hours at work in order to have some energy to do something but it requires recovery time so for example if I do something Saturday I can’t do anything Sunday but rarely do things on a Saturday because that’s the day I use to recover from working all week. Frankly it’s not a great way to live.

I know realistically there is going to be no pill to take or extra medication that’s going to make me feel “normal” but I think knowing there is something or a label will stop making me feel like a fraud or like I’m taking up time from other people.

RedLemon Mon 17-Feb-20 21:25:55

I would also echo Myume in that it’s actually relatively rare for there to be a “unifying diagnosis” that neatly encapsulates all symptoms in cases where there are lots of potentially complex/multifactorial symptoms.

Best of luck in finding answers either wayflowers

FrowningFlamingo Mon 17-Feb-20 21:27:20

I would agree entirely with @BudgieHammockBananaSmuggler

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