AIBU to be stern with the doctor?

[leftturn]

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

Thanks @FeedMeChoc I belatedly saw that the Calcium was high and not low. Even more relevant to ruling out a parathyroid issue. Even slightly raised calcium should be investigated. It's odd how bad some people's symptoms can be at just above normal range and others with sky high calcium feel nothing. But it must be tested I agree.

Thought this site had some interesting info, albeit am mightily confused by some of it. I have no parathyroids so I know that when my calcium is low I get awful muscle cramps but oddly can get them when my medication is too high and the calcium goes over range.

www.parathyroid.com/low-vitamin-d.htm

Either way, I would push for parathyroid testing and if that B12 is below range in your laboratory, ask for testing for Pernicious Anemia too op.

@itwaseverthus

It can be confusing for sure. I have hypercalcaemia and I get muscle twitches and parathesia, told it’s not a classic symptom of hyper but that doesn’t mean it isn’t! Doctors go by what they’ve been told in training but is that live it know more.

I assume you’ve had all 4 removed? Do you have MEN?

I'm not saying that FNL isn't real, in the sense that I very much believe there are all sorts of physical symptoms. I do believe that it's a dustbin diagnoses indicating the failure of doctors to identify a cause.

I speak as someone who had every GP I my previous surgery dismiss me as anxious when my health fell apart so I see red when I see psychosomatic.

Fortunately I am now under care of a competent neurologist.

@MaxNormal there is a cause, it's just not the cause you may normally connect to those symptoms. There are people who present like someone who has had a stroke, but with no neurological signs at all. No brain bleed, blockage, nerve function tests: MRI's are normal etc. No physiological reason for the hemiplegia. What do you suggest doctors do in that instance?

My latest test results were a year ago as that’s when I last went to see any doctor but I will ask for the repeat bloods when I go next week. I will be sure to ask for the tests I said before.

As for the cervical radiculopathy I was told because it’s lasted longer than the 4-6 months It normally lasts and because I didn’t get it treated at the start it is now permanent damage because it’s lasted over four years even while taking mediation for it. Yes I did have a nerve conduction study to prove the damage is there so that’s not in my head I’m afraid.

I do take 10,000 iu of vitamin d twice a day so I am taking 20,000iu of vitamin d a day and still only at 23nmol at last check. The average dose is apparently only 1000iu so I am trying to get this up.

Ok so you had a nerve conduction test to prove nerve damage, but then what? Gabapentin or Pregabalin presumably. That is the treatment. You are being treated. Nerve damage is permanent, they can’t just put them back together, so I don’t know what you were expecting.

As a PP suggested, I'd ask for a brain and spine MRI preferably with contrast.

If you can afford it, I'd also go private.

Have you had a brain MRI , I know someone with similar symptoms and it turned out to be MS . Another illness that seems to take forever to diagnose is Lupus as I know someone who was eventually diagnosed with it after she developed kidney failure , but she had been back and forwards to the drs who diagnoses assorts from arthritis to depression .

You can’t just ASK for a fucking MRI with no clinical indications for god’s sake. The NHS doesn’t have a limitless pot of cash that’s there to dole out expensive investigations to everyone who fancies one.

Thank you for re-mentioning pernicious anemia itwaseverthus, I think it really worth exploring for the OP.

So that's a high dose of vitamin D if not had bloods fir a year.
Just go back and ask for blood screen and vit D and bone profile
It's really up to the GP what tests you have and what they prescribe though. .

Sorry you’re going through this OP. From the symptoms could it be ankylosing spondylitis? It’s an autoimmune disease. Have a look online x

Think that would have shown in the MRRi spine 🤔

MRI

I get it’s frustrating but you need to give your doctor some credit. They have tried to help you. How’s your general well-being; sleep, mood and diet? It has a huge impact on your physical health.

I hate to say it but knowing what the doctors are like in my area they may have already written you off as a hypochondriac, although they wouldn’t admit to it or put it in your notes as that would suggest a diagnosis that they’d have to fund treatment for. I’d say be as firm as you like and consider PALS (although again quite flaccid as a solution) or maybe going down the complaints line. They’ll whine about resources but we can still drop billions into pensions, commissioning infrastructure, and expensive taxpayer subsidised company cars for senior executives in failing trusts.

@FeedMeChoc no, I lost all parathyroids during thyroidectomy for Graves disease. Been the worst thing to happen to me - trying to control the calcium levels is like pushing water uphill in a barrow. I totally would want a doctor to look into this for the op and hopefully rule out parathyroid adenoma. Wish more doctors were alert to this possibility.

There has been no sound physiological cause for the OP's symptoms, despite input from all the right specialists. So she could just keep flogging a dead horse,stop trying, or look onto alternatives such a a functional cause

This. OP, most of the posters on here seem to have missed the key point that you have had the symptoms for 12 years, without progression, and have seen specialists, had MRIs etc. The chances of you having MS or any neurological condition are vanishing rare in the circumstances.

You are on here looking for validation, and you will always get it because any fool can Google one of your symptoms and come up with diagnoses. They are not helping you, they are having fun being amateur doctors, but they are harming you by encouraging you to believe that a diagnosis has been missed, and to push for more and more tests, which are an obstacle to recovery from your functional symptoms.

Look, OP, you have a choice. You can go on and on trying to find a unifying diagnosis for an unconnected set of symptoms and waste another 12 years of your life. Or you can engage with your GP in managing your functional symptoms. I know you will probably choose the former: most people with functional symptoms do - and waste all their healthy years, convinced they are ill. But there is hope of recovery if you will engage with your HCPs instead of convincing yourself they are "missing something".

I know what everyone is saying about MRIs etc but when the op has clearly had out of range bloods which have not been dealt with, it's easier and cheaper to investigate those a little deeper before asking for consultants and scans. Repeats of bone profile, full blood counts, B12, maybe a Methylmalonic Acid test regarding that low b12 and of course parathyroid blood test. These are not typically massively expensive or troublesome to arrange. Don't accept Somatoform as a diagnosis.

www.dailymail.co.uk/health/article-2776581/Mother-looked-nine-months-pregnant-feared-dementia-diagnoses-rare-condition-Googling-symptoms-desperation.html

I was going to suggest asking about more rare neurological muscular and neuropathy type syndromes like auntie. There's Charcot Marie tooth and also hereditary spastic paraplegia.
Have you had nerve conduction tests? What about looking at reflexes for hyper reflexes or crossed abductor reflex?

MS came to mind because if symptoms but I see you've had clear MRI. It's what they considered with my ds and now he's pretty much going to get a ds of HSP as mentioned above and is on a genetics study as has a gene variant. (Ironically the other person with the gene variant identified has CMT and I also have it but have no symptoms of anything!)

Ehlos danlos syndrome and pOTS is also a good suggestion.

I'd have a look at the conditions online. The ncbi .nlm.nih.gov website seems really informative. Find all conditions and take that information to gp. Also have a look at nice guidelines for the clinical pathway for your symptoms.

Or you can engage with your GP in managing your functional symptoms But there are red flags that are not being addressed by the GP! Why oh why do doctors ignore blood tests which are out of range? A low b12 when you have tingling, numbness, nerve damage is potentially very serious, permanent nerve damage and wheelchair bound in the future if not addressed. It's not just a vitamin. Our bodies are made up of vitamins and minerals for a reason, they are all very important and the op has several out of range. It must be examined before she is packed off to the Mindfulness wasteland.

Are people missing the fact that the OP has had nerve conduction tests, has been seen by several specialists over the years, and had been given diagnoses?
Will people stop telling her she might have bloody MS!

The symptoms you are describing on your right hand side sound like my nerve damage (the numbness, tingling, pins and needles). Mine is most of my right hand side too. I would ask to see a neurologist.

(I don’t have MS)

PERNICIOUS ANAEMIA