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

I would get a second opinion but be prepared that this might be that your symptoms are psychological/functional. If this is the case, you might be lucky and there might be specialist psychological support available or it might be a question of referring yourself to IAPT.
Good luck. I hope you get some answers soon.

When I read your OP, I thought of a vitamin D deficiency due to the general aches and pains, tiredness, dizziness. GPs should prescribe vitamin D supplements if you’re deficient. I’m surprised that your GP hasn’t treated your deficiency as it certainly would have caused or exasperated some of your symptoms.

How long have you been deficient for and how long have you been taking supplements? You might need alternatives such as a loading dose injection or an oral spray instead of tablets. You may have absorption issues

If you are concerned that it may be MS you need a full spinal MRI as well as brain. I'm not sure if you've had this or not but I'd suggest a private neurologist appt where you list your symptoms chronologically

My MS was diagnosed via one brain MRI and lumbar puncture but you can have a clear brain MRI and still have spinal lesions. Apologies if this has been covered I've not rtft

Good luck

To my knowledge Vitamin D only comes in oral form. Correct me if Sim wrong but am I aware of injections.

Posters - if you don't know something don't state it as a fact it's misleading fir the OP who is already struggling to keep symptoms clear

@kingofkings Is your incoherent response indirected at me? I have had a vitamin D injection under the NHS so I know for a fact it exists, hence why I posted. Due to the high cost compared to tablets, injections are reserved for patients who need them most - including those with malabsorption (OP said that 10,000iu per day tablets did not raise her level)

It would have taken you seconds to search yourself, less time than you took to post. Instead you should take your own advice as it is your response that will confuse OP.

www.medicinenet.com/calcitriol-injectable/article.htm

www.wlmht.nhs.uk/wp-content/uploads/2013/01/Vitamin-D-leaflet-A5-8pp.pdf

www.wales.nhs.uk/sites3/Documents/814/VitD%2DABHBprescribingGuidanceFINAL%5BJan2018%5D.pdf

Seeing a rheumatologist 6 times in 12 years is quite a lot though, especially as they aren’t finding anything clinically wrong with you. I’m very surprised you still feel your GP is “under-treating” you with this level of referral and obvious care and interest in helping you. Most people would get one or very possibly two rheumatologist referrals at most if no reason for the symptoms was found.

Saying “CBT isn’t for you” without even trying it makes me think that you are after a diagnosis with a fancy name. You are going to have to face up to the fact that you might not get one. If several HCPs are telling you the same thing, there comes a point (especially after 12 years!) where you have to accept what they are saying and try the treatments they are recommending. I can’t honestly believe that you would rather carry on experiencing the symptoms you have rather than “give in” and try something that might just help. Even if it doesn’t, you’re no worse off.

People on here telling you that you might have MS or god knows what else are not helping you. It is highly unlikely you have any of those conditions, or they would have been diagnosed by now. You can’t just work your way through the list every time someone posts a new one until you find one that fits your symptoms best. That’s not how it works.

Before I get jumped on, I do understand how you feel to a certain degree. I have a chronic illness, an autoimmune disease, chronic pain, disc compression, hypothyroidism, peripheral neuropathy, and I’m a wheelchair user. This is what makes me sceptical of randoms on the internet trying to ”diagnose” you. It also gives me an insight into how the rheumatology speciality works and just how thorough they are at investigating symptoms and cross referring to other departments if they feel it’s necessary.

For a diagnosis with a fancy name : somatic symptom disorder.

I hadn't realised you saw a rheumatologist every other month. That is a lot.

I can't believe you think you're not being taken seriously.

Every other year not month.

can you afford to go private

Please explain how that will help? It’s the same doctors in the private system.

You have been thoroughly investigated OP. No one is saying you are a fraud, but you are on an unrelenting quest to get a name for your symptoms, which will make no difference to your day to day life. If you can accept that you might make some progress.

By the way ‘Functional Neurological Disorder’ is doctor speak for ‘it’s all in their head’.

Ask for potassium levels and magnesium levels (mg isn't in a standard full blood count - GP needs to specifically request it).

Potassium should be above 3.5
Mg should be above 0.7

Have you been given a diagnosis of functional disorder that you are interpreting as 'being told there is nothing wrong with you'?

If your vitD is still low despite taking supplements for ages, you may be taking it in a form that your body cannot absorb or taking nowhere near enough. Try the brand Nutri D3 (the one without K2 as your calcium levels are high). It sounds as though you will possibly need more than the RDA to get it up to good level. Your body will not pee out the extra as with a lot of vitamins. Vit D is a steroid hormone. But as you are getting regularly tested, you will soon know if your levels are getting too high. I don’t think you should worry about taking treble the RDA for example but I am not an HCP so this is my experience and opinion only. I have done it to no adverse effect until I reached a point of no longer needing to do so.

Nutri d3 liquid form.

https://www.neurosymptoms.org

https://www.amazon.co.uk/Its-All-Your-Head-Psychosomatic/dp/0099597853/ref=mpssa111?adgrpid=49982953821&gclid=EAIaIQobChMIkKfrpra5wIVVODtCh3AQAAQEAAYAiAAEgKM3vDBwE&hvadid=259127815118&hvdev=m&hvlocphy=9046897&hvnetw=g&hvqmt=b&hvrand=12330964733148138341&hvtargid=kwd-295411147169&hydadcr=348551799367&keywords=its+all+in+your+head&qid=1582008070&sr=8-1

Before going back to the GP and 'being stern' please give this website and/or book just a few hours of your time. I really think it would help you loads more than getting bogged down in the minutiae of tests and symptoms.

It's really insulting to suggest that OP has psychosomatic issues.
I firmly believe that a lot of people who are labelled as such in fact do have very real physical issues which are not correctly identified, either due to poor treatment or simply the fact that medical science isn't advanced enough to detect everything.
I think that things like functional neurological disorder are bullshit dustbin diagnoses.

But theres a strong grain of lack of sympathy on mumsnet along the lines of how dare you trouble the doctors, it must all be in your head when some poor bastard struggles on for years in abject misery.

What do you call a high dose of VitD?

https://www.pharmashopi.com/zymad-10-000-uiml-solution-buvable-en-gouttes-flacon-de-10-ml-xml-7045644_24971-141527.html

This is the French daily dose of vitamin D. It's called zymaD 10000UI/ml. It's available over the counter. The doc normally prescribed a bumper dose for kids (32000 I think in late Autumn).

ZymaD can be bought from French pharmacies online as in the link for €2.60. They advise at a treatment level 7-66 drops per day. And at a preventative level 2-3 which is what we do.

I cannot begin to describe the difference VitD makes.

Sorry I've read a bit more but I still think your dose of VitD is insufficient to correct. It's at the low range of a maintenance dose here.

It's not at all insulting to suggest that someone may have a psychologically driven symptoms! Why why why do people think this? The brain and body are completely interlinked, the brain is enormously powerful. This idea that it is rude to suggest a functional disorder is an enormous barrier to people accepting help and getting better. No one is on a position to diagnose on an internet thread. Signposting people to possible diagnoses - fine - but functional disorder is no more or less valid than hyperpararthyroidiam and it is unhelpful to suggest that is the case.

When two of the top symptoms listed by the OP are

Flat feet
Huge calves

It is hard to take her seriously.

Those are not symptoms. That's just how her body is shaped and how many peoples are.

@itwaseverus vitamin d deficiency would cause hypocalcaemia which she does not have - she has hypercalcaemia which is why the PTH needs checking. If the PTH is also high, this suggests hyperPARAthyroidism which is fixed with a simple operation (in the hands of an experienced surgeon).

Saying that functional neurological disorder is all in the head is a bit of a misrepresentation in implying you can think your way out of it, which isn't necessarily true, symptoms can get wired into your neural pathways, for example you've had pain in your back caused by a bulging disc, and when you make a certain movement it triggers that pain. The original injury can mend, but your body is used to getting that pain when you make that movement, so you still continue to get it even when the injury is no longer there. It's called Hebb's Axiom, neurons that fire together wire together, so it has become physiological and you can't just think your way out of it. Dr Norman Doidge has a couple of books on the subject and there's a Ted Talk by Lorimer Moseley that explains in a bit more detail. Dr Gabor Mate when the body says no is interesting on this too.

OP I understand your frustration. I'm going through similar, and I've largely worked out what's going on from randoms on the internet! IME you can be referred to many consultants who only look at a bit of you and not the whole picture, so even though it seems a lot is being done, none of it actually meets your needs.

Can I also add that if you have hyperparathyroidism, the vitamin d level will be difficult to raise as your body lowers vitamin D as a protective mechanism to stop your calcium going too high.

Please get your PTH checked. It must be done at the same time as repeat calcium and vitamin D to have any significance. Report back with the numbers when you have them. I’m happy for you to PM me.

@MaxNormal your post is quite insulting. Someone below has explained functional disorder far better than I could. It's a real thing. There is a service dedicated to it a the national hospital for neurology. It's not "batshit disturbing".
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. What do you think she should do?

It is possible to say that this is psycho somatic without that meaning that the physical symptoms are not very real and difficult for the OP to deal with.

The mind is complex! The brain deals with thoughts feelings pain movement.

At the moment it sounds to me like a lot of the OPs difficult feelings of which she isn't aware are being expressed in a physical way.

Perhaps psychotherapy would help her be more in touch with those feelings and reduce the physical somatic expression of them.

Sorry there were a lot of typos!

I don't really see why injections are needed when there are high doses of oral vit D available so try those first. We never give it in injection form. OP isn't on a high dose.

OP your calcium is just above normal range - is that from 2017?
If so that should be rechecked to be on safe side