Multiple symptoms & conditions, medical anxiety and an appointment coming up

[KatyMac]

New(ish) GP - seen her once and she started treatment for B12 deficiency based on the "it can't do any harm" scenario.

I have a BMJ article about B12 and a list of my many, many symptoms - would it be wrong to print them off and leave them for the GP about a week before my appointment?

The easy answer is 'my brother said so' which I know is daft

The problem is I have so many possibilities - each doctor only looks at the little bit of me that he/she deals with; I think my problems are interconnected, goodness knows if I'm right.

I may have to try gluten free (I have been gluten free several times before - without dramatic success) although I admit I was better with proper bread made out of proper flour, from a mill not a factory

It's too complicated for my little brain

Well, tell your brother to stop putting the frighteners on his worried sister without being in possession of all the basic facts.

Have you thought about going to a private GP for an overview of the situation? By their very nature, specialists will be specialist in a particular area. Of course, NHS GPs do practice by looking at an individual as a whole but with the immense pressure they're under, it just ain't gonna happen to extent you want, even if you book a double slot.

Did you run ehlers danlos by your brother? It still seems most likely to me, as your rheumy told you that you are hypermobile. Plus it would then cause all the gastro issues.
I do admit though, I see it everywhere since my diagnosis

He's pretty good actually - he's a molecular biologist and he lived through cancer - he has had diabetes (possibly induced by the cancer cure) & RA. So he is reasonably knowledgeable

I'm not frightened by possibilities the unknown is much more scary

I agree about the private GP - I'm just struggling to find one

A good few if your symptons are symptons of Lupus. I have it and my bloods tests are always negative.

Took a friend of mine 10 years to get her lupus diagnosis :(

He might be good but not that good if he is making suggestive diagnoses based on incorrect information.

I am a firm believer in people suggesting random diseases as being very unhelpful. In my long-term patient experience, you need a good, holistic medical professional and support in your appointments to advocate for yourself, not suggestions that may perpetuate your medical anxiety.

Hmm - I'm not sure; somewhere in my recent reading (but I forgot to bookmark the page) there was a description/picture of the different types of poo for UC vs CD - I was fascinated as I had both types regularly

My Bro does his best, another country, different treatments & frustration that he is being treated & I am not adds to confusion I guess

He is researching ehlers danlos & non coeliac Gluten intol & everything else suggested....poor boy is knackered - he is on quite strong meds & a new biological thingie for his RA

this is fascinating thanks clarella for this link talking about it

That link KatyMac is why I suggested an immunologist referral on the NHS - there are a whole family of immune diseases. always worth ruling out and getting them to signpost on.
Plus immune diseases like CVID are not often well known by gp's. I will send you a Pm.

I hope you find some answers, KatyMac.

I have a couple of questions, not answers! But at least they will bump your thread...

CrashDiveOnMingoCity, where do you find a good, holistic medical professional and support in your appointments?

And: when you, Katy, and others, talk about "stretchy skin" what do you mean, please? In our family we appear to be especially prone to stretch marks - do you mean that, or the opposite? We have all manner of AI going on.

stretchy skin photo here

Umm the only thing about the immune thingie & the iGa (& the others) is I have lots of allergic reactions; would the absence of them stop that?

No totally possible to have allergies and immune deficiencies as it depends on the immune deficiency - in fact some immune conditions increase risk of allergies, eg no iga means 10% chance of being coeliac.

Katy have a read about Sjogrens syndrome. I have a friend with it and you share many symptoms. It is an autoimmune disorder affecting mainly women and the fact that your brother has RA is also in the picture ( her sister has it)
It sounds horrible for you and not knowing must be so difficult

Allergies are also comorbid with a lot of people with eds

The problem is there are so many possibilities; I really need Greg House - he & his team would find out what was wrong even if they killed me before the end of the episode

I don't know who to ask to be referred to: immunology, haematology, rheumatology......

I feel such a pratt

Dont feel bad :( its not your fault!

House could fix you cause hes in the states, you'd get referrals to every possible specialist (assuming you could afford it) and keep rereferring until it was sorted.

Please google Hughes Syndrome. It's a relatively newly discovered collection of symptoms and is little know by GPs. I think you have quite a lot of the hallmarks of Hughes.

I know nothing but aren't those vision symptoms what your dd had?

A referral to any one of those three will be an improvement on now OP so ask for the one you think will be most helpful as soon as possible if you can. If dr says no then ask them for their diagnosis and treatment plan - if they think it is within their capabilities, if it is not insist on a referral!!

I think you're right Silver

I'm not googling any more (& DD's problems were significantly different but I will mention them)

I would suggest asking for referral to either an immunologist or an endocrinologist There is some overlap between the two as often autoimmune diseases lead to disruptions in various hormone production which is the realm of endocrinology.
I would simply state to the gp that as you have a wide variety of symptoms affecting various organs/systems of your body you would like to be referred to an endocrinologist or immunologist to rule out the possibility of them being linked in any way or to see if they could be possibly part of an underlying syndrome.
I think this would be a very reasonable request and should be easily facilitated by the NHS.
When you go for your app then with endo/immuno I would take a simple list of your symptoms (not the diagnoses you have been given) in vague chronological order. SO for example Dec 95 - generalised fatigue, Jan 96 - muscle pain etc....
That way the doctor can review ALL your symptoms easily and decide if they may fit with any possible underlying syndrome(and many syndromes do have vague non specific symptoms such as Addisons Disease) and order further tests as needed.
Good luck. I hope you get sorted.

My appointment today has had to be cancelled as I'm needed at work, so I have another appointment mid November

So I have also booked a telephone appt & I'll be trying for an emergency appt tomorrow when she has slots

Thanks for that suggestion - it does sound reasoned

I have been told my blood tests are 'fine' & the B12 is good well it would be after 6 B12 injections

This all sounds miserable - has anyone checked your pituitary? Benign pituitary tumours can cause chaos, disrupting your autonomic nervous system which hcan cause some stuff to go hypo and some stuff to hyper - as I read was happening to you. Ask for an MRI scan of your pituitary.

I would imagine after 20 years of being ill this is fairly unlikely but thank you for thinking of me and I will mention it

It does discuss diabetes insipidus which is something I had considered