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

Scotland my sons consultants kept saying he had autism and that's the reason for his muscle deterioration, leading to toe walking etc.

Turns out he has a rare neuromuscular disorder of which autism can be a co morbid condition.

His deterioration was gradual and he's had other weird symptoms that have come and gone along the way.

I always say trust you're instincts. I'm glad I did with my son as he's gone from a child who walked early, to one who struggled to walk well to one who walks better due to meds and splinting - to now sometimes needing crutches for muscles spasms that cause his leg to get stuck at 90° to hours and who may end up needing a wheelchair.

Spot on @MrsNoah2020 I have worked with a few people with FND (I'm not saying that is what your situation is OP - none of us here know you and it is the health care professionals' role to be thorough and rule out physiological causes first). Those that are improving and experiencing a lessing of their symptoms and greater periods of well-being between symptoms are the ones that are accepting of the diagnosis, engaging with the therapies that exist to help them manage their experiences, and have supportive people around them including GPs who are familiar with the condition.

@stouffer have you missed all the posts where the OP lists all the tests she's had and the specialists that she's seen? What would she be complaining about exactly?

@Batqueen the OP does have nerve damage. That's exactly what she's been diagnosed with.

Have you looked into Hypermobility syndrome. Lots of your symptoms point to this. May be worth going to see an osteopath.

Have you looked at the Dystonia Uk website? A lot of your symptoms sound like dystonia

OP - re. your dizziness that is better when you lie down - that is classic BPPV - a Vertigo condition caused by calcium crystals in the inner ear moving to the ''wrong'' place that affects sense of balance and is sometimes hard to treat although a lot of people improve by doing Epley Manoeuvre and other ''exercises'' but they don't work for everyone. There is also TRV mechanical chair - but only 2 in UK.

This thread is a good example of why the internet can be harmful. OP has been seen 6 times by rheumatology and said she’s not hypermobile, in fact, she said she’s stiff in her joints. With that in mind, she most likely doesn’t have hypermobility syndrome or EDS.

Hi thanks for all the replies, I shall reply to as many as I can. Yes I have seen a rheumatologists this was mainly at the beginning when I had a small amount of symptoms and over the years they have progressed into what I have now.

I have two diagnosis of things wrong with me but to me it seems like it takes such a long time to get there and they are usually diagnosing a part of the problem but not all of it so I will give the worlds most detailed history to you all.

I do have gout this was the first thing to happen, its never affected anything apart from my toes and I’ve had a doctor take a sample from other joints and there were no uric crystals but there was inflammation and swelling - I was then told everyone gets that So I took gout medication and vitamin c which apparently meant to help. So I learned to strap up my joints and get on with it.

I mentioned back pain when seeing the doctor and was sent for x rays to be told yes I had some disc damage but that everyone has slight bits of it and there wasn’t much to do about it so carry on.

A few years later I popped my knee out slightly while walking and saw a doctor and it went back in and again told sometimes this happens to people- again I learned to wrap my joints or wear supportive things to stop it from happening this was the first blood test to say I was vitamin d deficient and to take vitamin d so I did.

I woke up one day and couldn’t move my arm, I assumed it was like the other weird things that had happened to me so I carried on and wore a brace and used my other arm. Then I was told nerve damage and I should of got it checked out earlier but based on previous history of being told everyone does these things I began to be wary of going to the doctor for being told there was nothing wrong with me. Did have a nerve study test at this point and told damage to my c4-c6 but it was within acceptable range and to take Pregablin.

One day I collapsed and when I came round I started to apologise because I was at work to be told I needed to see a doctor as I was not apparently making sense - saw a doctor and was sent for a mri. Apparently no damage and told to rest as it had to be stress. My vitamin d was still low so told to up this.

My eye felt like it was trying to pop out my head during this time so I had to put pressure on it from to stop that feeling - went to see the optician as I assumed it was that I needed different glasses. Nope sent to the optomologist who did a field study test and the pressure test to be told no optic neuritis and it must be stress so to relax. My eye now twitches and spasms on a semi regular basis that I don’t even notice now but it does sometimes freak out the public/people I work with.

There were blood tests in between and I was told they were all okay until I downloaded the paitient access app to find out actually my blood tests have routinely been abnormal.

All these things are not one offs and they just add to existing things and all continue to effect me now, I mean I knocked my elbow earlier and it went dead for about an hour.

None of this is normal, I am not harping on about being ill during this in fact I do just get on with it. I’ve been promoted several times and taken part in things for the government relating to my are of expertises that are now in practice for loads of people I’m not holding court in front of people saying woe is me, I just want some answers and I just want to know if there will be anything else weird that is going to happen to me and if so can I please hold it off Somehow or prepare for it. I’ve had twelve plus years of strapping my joints, being in pain, passing out, feeling dizzy, being tired all the time and other weird things I think it’s got to be a point where there’s a cause and it’s not just one of those things I have to deal with.

” There were blood tests in between and I was told they were all okay until I downloaded the paitient access app to find out actually my blood tests have routinely been abnormal.”

Blood test results need to be considered in context though and “abnormal” may be only slightly out of range and be significant e.g. CRP of 7.

Have you looked at ME / CFS. I have had this all my adult life post glandular fever. Extreme fatigue, dizziness, curling hands and feet, muscular weakness, etc..

I know it has been suggested already, but my first thought was ehlers danlos/POTs. You say you are less hypermobile now, but that can happen with age. It is notoriously difficult to get a diagnosis. There are different types, not just the hypermobile type.

Blood test results need to be considered in context though What context though Schuyler? Where there is a below the reference range B12 level and the patient has neurological symptoms, which she does, the advice is to commence B12 injections immediately.

I had a look at this and feel sure the op could have a b12 issue going on. The low vitamin D which refuses to climb while the calcium is over range also point heavily to parathyroid dysfunction which has a heavy disease burden and must be ruled out. There is no way these two abnormal blood results should be ignored. Ever. www.b12d.org/submit/document?id=46

@itwaseverthus Are you a doctor?

No just a patient who had been misdiagnosed for a decade bohemia14 I learned the hard way that certain abnormal results cannot be ignored.

@itwaseverthus just wondered.... I guess I'm concerned at the number of people giving out diagnoses but you sounded knowledgeable.

I'm just not sure how much a thread like this can help the OP.

@scotlandthebravenotthebrexit I certainly saw the bit about how she’d had some tests and referred to some specialists but they obviously haven’t “drilled down” to what the problem is or offered her any meaningful support to live with her condition. Too many doctors are just too skilled at shrugging their shoulders when faced with something that’s not in the text book.

I haven't read the entire thread but you sound similar to my mam, who has been trying to find a diagnosis for a similar length of time with a few of the same symptoms. Has the rheumatologist looked at autoimmune conditions? Sjorgrens syndrome?

@itwaseverthus

“ What context though Schuyler?”

I gave the context in terms of CRP of 7, a point or two out of range is not a reason to concerned or to interpret as abnormal!

Yes and the point I was making (badly, I grant you) is that the context for op was abnormal calcium and vitamin D, never something to shrug about, (low D alone, perhaps, but not low D with raised calcium) and deficient B12 with a myriad of symptoms. That's context that counts - does the patient have abnormal levels of b12 and neurological symptoms? If the answer is yes, immediately commence b12 injections every second day until no further improvement of symptoms whilst simoultaneously investigating the cause - either malabsorption or pernicous anemia. And yet, the op says that nothing was done regarding the b12 level, or indeed the calcium abnormality. So context was there and dismissed.

This thread is bordering on insanity. The OP won’t listen to HCPs who tell her there’s nothing wrong with her, won’t listen to posters on here who tell her there nothing wrong with her and other posters won’t listen to the fact that there’s nothing wrong with her. She doesn’t have MS or any of the other myriad ridiculous diseases people keep coming up with. Do you all honestly think you would be able to spot fucking MS over broadband better than a neurologist with an MRI scanner?? 🤦‍♀️

A list of blood test results in isolation means ABSOLUTELY NOTHING to a lay person without any fucking context. Trying to diagnose someone over the internet is dangerous and stupid. All you are doing is feeding the OPs health anxiety. Flat feet and large calves ARE NOT A SYMPTOM OF ANY DISEASE.

@leftturn You keep saying they didn’t treat your nerve damage but as I said before, Pregabalin is the treatment, so I don’t know what more you want.

Not one is trying to diagnose anyone gingersausage , they are throwing out ideas for the op who feels she has been parked, medically speaking, as 'all in the mind'.

What some people are pointing out is the abnormal bloods should be revisited if not already to rule out deficiencies that seem not to be on doctors' radar commonly.

@leftturn take a look at the tables of symptoms and improvements after initiation of b12 on this paper. I realise there is a lot of medical speak but read the patient cases. These are folk with b12 levels similar to yours and symptoms very similar to yours. Then go back and ask if your b12 could be tested again (and the calcium/Vit D/Parathyroid). Simplify things.

www.ncbi.nlm.nih.gov/pmc/articles/PMC6543499/

OP, you say your last bloods were done a year ago? is that right? if so, tying yourself in knots about those results is pointless.

new bloods, discuss with GP.