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?

Bump

Sorry katy, i dont have an answer. But having anxiety too, i didnt want to leave you unanswered :)

Hope someone helpful comes along soon x

Thanks Beyond; I had my brother telling me off all morning (well about 20 minutes) on the phone from Sweden about "How I need to DO somthing...."

She'll probably be a bit freaked out if you go in with that BMJ article (I've seen it - remember). She's got you on treatment now. Why not let her get on with the loading doses and then see where you go. She shouldn't just do the loading doses and then abandon you. She should continue to monitor you and top up as necessary. If she doesn't do that, then is the time to go in with the article and say "Why are you doing this, when this is the latest research and it says this."

In my experience it is a major achievement to get vitamin B12 deficiency recognised and treated without a fight.

I've already been told it's 12 weeks for the next injection as long as my blood test next week is OK

This isn't going to help either is it?
"I've been working on compiling my symptoms:

IBS diagnosed Summer 95 diarrhoea, mucus, cramps, very fast transit, some incontinence, some blood (all checked out & fine). Even on FODMAP exclusion diet I still go to the loo 4-8 times a day
I've excluded from my diet (NHS dietician) dairy, eggs, green veg, raw fruit, more than 2 bananas a week, pulses, onions/garlic, mushrooms, citrus fruit - I tried excluding Gluten but my gastro consultant told me not to
I've excluded from my diet (by trial & error) coconut, almonds & artificial sweeteners

CFS diagnosed Spring 96 - tiredness (4 months off work – crawling to the bathroom) walked with a stick for nearly 12 months, pain in legs, missing doorways & hitting my shoulder (or desks & hitting my thigh), visual disturbances when tired, headaches that can last for weeks, I sleep up to 12 hours a day (in my good phases) & have slept up to 18 hours (initially)

Fibromylgia - pain in joints, bones, muscles (walking up stairs just one flight is hard), hypermobility

Misc symptoms (or ones I'm not sure what they belong to)
• Mouth ulcers
• Pins & needles in my feet (less so hands),
• Severe pain in my feet (particularly in waking),
• Night cramps (in my feet & toes)
• I struggle to hold a pen (for periods of time), use a tin opener or a pair of scissors to cut anything more than paper
• Urinary incontinent after my daughter was born (I'm now all TVT'ed up & fine),
• Urgency, frequency
• Regular cystitis,
• Regular thrush,
• 3 miscarriages & an ectopic pregnancy,
• Back/hip pain,
• Inability to focus on a moving object (like a ball - but my mum says I've always had that),
• Watery eyes
• Regular Otitis Externa,
• I lose my words when I am talking,
• I can look at a word & not know if it's spelt right,
• I get lost in sentences,
• Confusion – just in the moment a complete loss of mental direction"

Er, yes. Yes it would look spectacularly rude. And you would look ever so slightly bonkers.

Also your GP is very very busy. The likelihood she will have used the week before she sees you to have read this and then not forgotten all about it by the time she sees you is very very small.

Just so fed up of each of my symptoms being treated separately - I'm sure it's auto-immune

If you ar hypermobile, has anyone looked into eds? Cause i get a lot of the above, and its all attributed to that?

Eds hypermobility type commonly misdiagnosed as either cfs or fibro...

My brother will read up about it - he wonders if I have Crohn's? He has RA & in Sweden the first step in any AI diagnosis is a stool sample as it nearly always has a gastro vector (apparently)

I have been ill for the best part of 20 years - it has affected my life considerably

I feel my diagnoses are a collection of symptoms rather than illnesses

I wish for my condition to be looked at as a whole rather than; treat joint pain, oh gastro got worse let's forget joint pain & look at that one - goodness those Ulcers are bad - I know I refer you for that

I think I have unrealistic expectations

I am just wondering why you were told not to try being gluten-free? I would have thought it was at least worth a try. I have only recently been diagnosed as a coeliac but, after 8 weeks of a gf diet, all my fibro symptoms have disappeared.
I have found the diet so easy, even as a vegetarian.
The only reason not to go gf is if you are due to have a gut biopsy. Have you have the blood test for Coeliac's? It doesn't always show positive which is why the endoscopy is necessary.

I've had 2 biopsies which both said no to coeliac

& tbh on my diet as it is without gluten I have virtually nothing left

Like Beyond I was going to ask if you'd considered Ehlers Danlos Syndrome?
My three children have EDS in varying degrees of severity (diagnosed) as do I (not yet diagnosed). Between us we have all of your symptoms bar two. It might be worth you taking a look at Ehlers Danlos Support UK

Which two ?

Umm I passed the info to my brother, who is going to look at it (I promise) he is getting very fed up of the NHS & is thinking of sneaking me into Sweden for a full work up

I don't have elastic skin tho' is that an important symptom?

Hypermobility Ehlers-Danlos Syndrome fits quite well doesn't it?

Dr Google strikes again

That would make my B12 deficiency a symptom not a cause (which I've been suspecting)

I can't see us addressing any of this in a 10 minute appointment

Can you afford a single private consultation with a specialist in immune deficiency conditions? It would probably cost between £150 and £250 and could be very helpful.

Inside health on r 4 this week (eve repeat) had a lady with similar symptoms and it turned out to be an immunity issue- can't remember what though sorry!

I assume thyroid has been checked? And coeliac?

I also (as well as the eds) have psoriatic arthritis, there seems to be (unofficial) an increased risk of autoimmune problems in people with eds, so you could still have something autoimmune even if you did have eds.

Did you see a rheumatologist to diagnose the fibro? They can diagnose hms, though not officially eds (nhs officially says hms and eds are the same, yet they are iffy about diagnosing eds - im waiting for a geneticist to confirm mine at the mo, rheumy diagnosed hms)

Not elastic skin is not a problem, i've spoken (over the years!) to quite a few people diagnosed by the leading expert in the field who dont have it.

I'm 28 btw, got my hms diagnosis at 26 and as i said, still waiting for official confirmation of eds. It is massively underdiagnosed, and diagnosed late in those who do have it.

The rheumo said I was hyper mobile but didn't mention a syndrome

I can afford a specialist referral - but when do I go/who do I see?

Thyroid fine, B12 low, Zinc low, MCH & MCV both high, awaiting tests for Vitamin D - but assuming it's low & I keep getting this odd message about my kidneys - that the GP brushes off

My rheum said the same first time, i then took a list of my symptoms about 18m later and told her i had hms, which she agreed with. I then asked my gp for genetics referral to look at family history etc re eds.

Expert in the field is prof rodney graham who only sees patients privately now as he is semi retired. So I'd try to see him, if that is possible?

Professor Rodney Grahame tel 020 7806 4060 [email protected]
He's at UCL :)