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’m slightly confused by the fact that you’ve managed to get countless referrals yet you think your GP isn’t listening to you. You’ve been told by several health professionals that everything is within normal limits, and yet you’re still convinced that someone on here (with no medical training) will be able to diagnose you more successfully than any of the specialists you’ve seen.

My understanding is that disc damage and pain do not necessarily correlate. One can have severe damage and little pain or relatively minor damage and unbearable pain.

A CRP level of between 4-7 isn’t a concern.

Have you had mri brain and spine?

I would also suggest asking about functional neurological disorder and if they are thinking along those lines enquire what therapies may be available to you. I have seen people with FND who have benefited from working with physios, occupational therapists and having CBT. Good luck.

Mild viral illnesses put your CRP into double figures, more serious ones high double figures and significant bacterial infection/inflammation can put it into several hundred. In the scheme of things a CRP of 7 is completely insignificant. In addition it measures response to acute illness not chronic health problems so a level of 7 in August is irrelevant to how you feel now.

Pernicious anaemia?
pernicious-anaemia-society.org/symptoms/

Have you tried Pilates as a previous poster suggested?

Sorry to hear you are suffering, and I hope you get things sorted out, but I have to disagree that it's because you're a woman.

It’s because ginger I have seen a rheumatologist and a optomologist and while my symptoms keep getting worse and not improving they are still there and I am taking medication they are not improving.
I also hadn’t seen my test results until recently but there were several that had consistently been abnormal according to the app so I was worried and I wasn’t sure what to do.

Thanks ikeameatballs, I have no idea what they mean it’s just the ones I listed are the ones consistently saying abnormal the times they have been tested and I have no frame of reference apart from what it says is normal or abnormal.

I have no idea if I should be worried about my weird symptoms or just take the medication and get on with it like I have been but I know that’s probably not doable as I am getting more cramps/spasms and stiffness in my joints that I can’t ignore it forever. It’s why I asked if I should be more stern with my doctor and ask for more tests or just accept it and be in pain.

The only time I have had spasming was when I picked up norovirus, was very ill and then accepted some milk of magnesia. It turns out this can cause an electrolyte imbalance. It was quite scary at the time, but fleeting. The only reason I tell you this is incase your spasms could have a dietary link. The other thing you might want to think about is posture. Improving your whole body posture, focusing on your breathing etc can be hugely helpful at alleviating tensions that you don't even know are there. I have a friend who cured her crippling back pain through CBT, which was suggested by her GP and provided on the NHS. Quite how this works I can't imagine, but clearly it does. Thinking outside the box and trying some alternatives might be at least provide some relief even if it doesn't cure you.

It's really best to take your doctors advice. Posting on here is going to give all sorts of random advice and you'll end up getting even more side tracked.
Have you had any recent abnormal bloods ?

Have you been offered referrals for CBT, an an expert patient programme or any kind of chronic condition management? This is what you been to be asking your GP about now.
Although you're saying your GP isn't listening to you, you've been assessed by several specialists who have not identified anything significant. This doesn't mean that your symptoms aren't real, but that there probably isn't any physiological cause. Hence people talking about functional disorders.

I don't think people on here talking about MS, EDS or Parkinson's are being that helpful.

I think you should request a neurological assessment. It’s a very long time to be ill and incapacitated by a number of symptoms with no proper answers. Re-not having a rheumatoid factor, have you heard of sero-negative arthritis? It might be something to consider. I’m not sure how common it is - my mother had it.

Right. Calcium should pretty much NEVER be abnormal and uninvestigated. Sometimes a Vitamin D deficiency will push calcium out of range but once that D deficiency is corrected (and why wasn't Vit D prescribed or at least bought) that ought to normalise - UNLESS there is a problem with the parathyroid glands which can cause hypercalcemia or hypocalcemia. Symptoms can be tingling and Tetany which is muscle spasm. Definitely get this Vit D/Calcium situation looked at. Correct the D deficiency then see what happens to the calcium, with the doctor's help of course. There is a blood test for parathyroid function too.

If your B12 and folate were low, this can also give hideous symptoms and infact can lead to sub acute degeneration of the spinal columm and nerve damage. It must be addressed. There are issues already showing in your blood results that mean you can push for these to be investigated further.

www.webmd.com/diet/vitamin-b12-deficiency-symptoms-causes#1

Take a look at the list of symptoms of hypocalcemia (low calcium)
www.healthline.com/health/hypocalcemia#symptoms

I should have said a rheumatology assessment might be better consider some of your problems- but if you have one the specialist can liaise with the other. I hope you get the help you need.

You need to ask for a referral to a neurologist. Be assertive, as all of these symptoms need to be assessed and investigated by a specialist.

Not getting a firm diagnosis has zero to do with whether you’re male or female.
More that every body is different so responds differently to things.
For example, I take a significant number of painkillers every day. If my best friend took the same, it would make him very poorly.

Just seen your calcium is high www.medicalnewstoday.com/articles/322012

I do buy and take vitamin d tablets as they won’t prescribe it to me but still can’t get it much above the 23/25nmol even with 10,000 iu twice a day. I shall ask the doctor if I should take more.

I shall ask for my calcium, vitamin d/b12, pth levels for be tested. Is there anything else that can be tested by a blood test I should ask for?

The thing is I have seen the rheumatologist about 6 times in 12 years so it’s not like I’ve seen them a lot and nor am I in and out the doctors a lot so I have no idea what to ask for or what tests that should be done, it’s why I am asking on here so I can ask for advice before I go in again and hopefully get some answers.

It’s not something in my head and so CBT is not for me as I literally have fallen over things from being dizzy or my leg giving out and I passed out in pain from my arm and have a nerve study that shows Irreversible damage from being untreated it’s just then put to me by a doctor that most people have these issues and not the symptoms I have.

Also the reason I mention being a woman is that statically women are likely to be under treated than men, they weren’t part of clinical trials till the 1990s and still most drugs are tested on women even though the body chemistry is different. Even now there is a lot of unconscious bias with woman more likely to be referred to psychiatrists for pain and men more likely to be referred to find out the cause of their pain. I have seen this happen in real life as well and it’s shocking how quickly men are believed but women told to get on with it or it’s in their head,

I just want an answer and to function to a semi normal state and also to know what to ask for when it comes to tests so I don’t just believe the doctor when he says everyone has these issues again.

I mean when you go to a doctor you are asking their opinion on how to proceed from here. You can ask fir up to date bloods if they haven't been done fir a while but wanting ' an answer' may not make sense as there may just be a process to go through now clarifying and starting again at the beginning, seeing if the bloods are ok and taking into account your previous specialist reviews and investigations.
Try to keep things simple. For eg low vit D can easily be corrected, and it's not an illness can cause tiredness or can be symptomatic.

asymptomatic that should say.

Symptom wise, some symptoms are significant and some are not so significant - that's what the doctor is there fir.

Where does it say you have irreversible nerve damage from not being treated? That isn't the same as saying you have cervical nerve compression.

CBT isn't about it being "all in your head". It's one of the treatments that can help you live with a chronic condition. Isn't that what you say you wanted?

I'm not sure what you're trying to achieve tbh.