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

Lyme disease? That can cause some of those neurological symptoms.

I can see my blood tests results from 2017 onwards and I know my vitamin d levels are shockingly low even when taking extremely high doses of vitamin d. I buy it online as it’s not something that gets prescribed by the gp.

I have loads of results but I have no idea what they mean.

This is all a bit random and confusing.
You've been seen by specialists in rheumatology for years but don't believe them?
If you've had blood screens and clinical assessment then what you might benefit from is an assessment for those unexplained symptoms eg if you think you have neurological symptoms.
Some symptoms are not in a specific disease pattern and may not have a specific diagnosis.
Tests for gout are a guide only - it's more of a clinical diagnosis with blood test adding information.

What do you mean by “stern?”

It sounds like your GP has done a lot already, and I can’t see how this equates to being “fobbed off:”

Nerve conduction studies
MRI scans
Referral to rheumatology
Multiple blood tests

You could ask for a neurology referral or go privately. Others have mentioned “functional neurological disorder” - it’s basically symptoms with no known physical cause, and could possibly be what you have.

GPS do prescribe Vitamin D in varying strengths

Blood tests results that have been abnormal on my paitient access app - please bare in mind I have seen doctors numerous times since these results to be told everyone’s a little off in some of these areas

Vitamin d
Vitamin b12
Serum folate
Serum total protein
Serum calcium
Serum ferritin
Serum c reactive protein level
Hameoglobin estimation
Platelet count
Haemocrit
Aptt ratio

I have not long had the app and have no clue what these things mean or what should of happened when I had then tested in 2017 but I imagine if they came up as abnormal I should of had more tests?

Your facial symptoms + arm symptoms sound like a cervical disc compression.

I'd want to see a podiatrist too.

What are your calcium levels?

And vitamin d come to that.

Have you got a PTH level as well please?

I’ve been seen my specialists but only to be told there’s nothing wrong with me which I believe and then go about my life but nothing’s getting better and only getting worse.

What happens is something weird happens with my body and I go to the doctor and wait for the specialist who then says everyone has these symptoms But here have some medication and we’ll draw some blood. I then feel bad for wasting people’s time and live with pain/not using my arm/having spasms for months before I go back again and the cycle starts up again.

Now according to the results there have been loads of things that have been testing abnormal but I was never told any of this until I downloaded the app and saw the tests results which again has started the cycle off again and I am due to see the rheumatologist next week as I don’t want to keep being fobbed off if there is something I can do to help/fix the symptoms.

That’s where I want to be more firm/stern and ask for a clue as to how to go forward and I just need some inspiration/a clue as to how to do that

It’s not normal to have your bloods slightly out of range. Especially that many.

We cross posted but please share your results as above.

What are your vitamin D levels, OP?

Vitamin d is 23 nmol/l and I take 2x 10,000iu a day
Calcium is 2.61 mmol/l

As for PTH I have no idea as it’s not been tested according to the list I have on the app

I feel your pain. 10 years of going back to the doctor with strange symptoms, all of which have been dismissed.
2 years ago finally got a referral to a neurologist. At every meeting, I have been asked if I suffer from anxiety and depression.
Every bloody time
Even said 'are you sure' when I said I'd never had suicidal thoughts
Went back to the GP last week with muscle spasms down my left side
He could see the spasm, and suggested it might be stress related. What bloody stress?!
He doesnt listen. Sees middle aged woman and automatically pthinks neurotic
Ironic thing is, I was so bloody frustrated I cried.
He asked if I was depressed.
Arghhh

Is it possible you have sarcoidosis? My husband shares some of your symptoms and was diagnosed with multi organ neuro sarcoidosis. He started off private but is now on NHS to manage the condition long term. It is worth researching/asking the question. We had never heard of it until he was diagnosed. Best of luck to you.

May not be useful but I was told for years I didn’t have RA as my RH factor was too low. In fact I have psoriatic arthritis (very little psoriasis) which is almost identical to RA but does not show up in bloodwork

In terms of significance re the bloods it really depends upon how far off and in what direction and over what time frame to think if there is one unifying diagnosis.

I would strongly suggest asking them if you could have Functional Neurological Disorder and if so what support is available to you.

I think the response op is "it's 21st Century. I'm numb, in pain, tingling and generally unwell. It is totally unacceptable and i require some answers". And sit. After I broke my back and the gp said "yeh well, if you are still in pain in 10 weeks we'll refer" I said and how long will the referral take then. "Oh um 10 to 12 weeks". Oh so you expect me to be in pain for bearly 6 months then, when my pay is about to run out and I might lose my job and moving forward the NHS might lose 45% tax for the next 10 years. "Fine, here's the referral, it's not personal" referral slammed down on desk.

Severely broken L1 which MRI noted was knocking on spinal canal which when I saw neurologist, who was fab and got me referred yo best osteoporosis unit in London and on zolendronate infusions, also confirmed was too severe for kyphoplasty but reinforced my instinct that pilates was helpful.

It helped my recovery hugely yo know what was wrongand get informed specialist advice.

Yes, be stern and demanding op and remind them that the nhs is finded by the people for the people and depends on revenues from keeping in work those who can work.

Be very very stern. You are v v entitled to optimal care. Bat away the culture of excuses.

Ask your GP for a retest of calcium and vitamin D with PTH this time

Your calcium is just out of normal range (2.60 is the upper normal range) and with a low vitamin D, that is indicative that you may have primary hyperparathyroidism. You can’t know this without having your PTH level checked. If it’s not low as in less than half the upper range (less than 3.4) then something isn’t quite right.

If it IS low, they need to find out why your calcium is above range.

Sarcoidosis is one consideration, especially because your CRP is out of range (I assume elevated?)

Is your B12 low? Even slightly low from range can cause symptoms.

Check your vitamin d tablets. White ones generally contain calcium which with calcium just out of range, is not what you want if there is a risk that your PTH isn’t doing it’s thing properly.

The needing recovery time after expending any amount of energy sounds really familiar to me. I have a diagnosis of fibromyalgia and chronic fatigue syndrome (ME). Unfortunately there is no definitive test, just diagnosis by symptomology and exclusion of other causes. I do take medication for it, which helps somewhat. It’s worth looking into (I was only diagnosed after doing my own research having struggled on and off for a long time).

Have you considered seeing an Osteopath for your arm? I’m also thinking it could be disc.
Specsavers have a very good eye test now at an extra £10 might be worth checking out. It can tell if you have had a bleed. I know because it showed up on mine.

This is what I mean Hazel I wasn’t depressed before this started but now 12 years in I am slightly but I am not saying anything or I know the cause will end up being depression

My B 12 level is 132ng/l and CRP is 7mg/L

My tablets are not white they are yellow is that a good thing?

I will ask for more blood tests with a pth level, is there anything else I should ask for ?

CRP of 7 is not significant

My RH factor has been consistently 7iu/ml so I don’t think it’s anything that could be linked to that as I am way under where I need to be.

The spec savers optician with the new test is who sent me to optomology to be told it’s nothing and everyone has spasms in the eye and it’s not optic neuritis so I shouldn’t worry.

There is problems with some of my discs but apparently a degree of wear and tear in discs is normal and that’s what I have a normal amount of damage in ones in my neck and lower spine.

The app said it should be under 5? Is that not true and should I not worry?

It went from 4-7 from January -August in one year but if that’s normal I shall cross it off my list of worries.