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 only thing that works is steroids & I can't have them long term

I think Dr Google and online forums can provide sources of support and friendship but there is a dark side. Being patients and not medical professionals, (most of us) we are unable to sift the good info from the bad info. Not all research is decent research.

I am only posting this because you wrote 'medical anxiety' in your title and I would agree that it's coming across loud and clear.

Good luck with however you choose to proceed.

Sounds frustrating and awful katymac.

My only thought is have you been referred to an Immunologist? They will test things other areas ( like gastro) have not and have good understanding of the whole body not just one bit usually! They look at symptoms, infections and they run LOTS of blood tests - things like testing all the immunoglobulin levels and many more I cannot list/remember! Then they look to see what is going on and focus on diagnosis and then on TREATMENT!

As no consultant has got a diagnosis or treatment regime I would request a referral to Immunology. The worst they can do is blood tests - and say it is ok. Then refer on to an area they think may treat you!

Thanks - maybe immunologist may be a way to go

I tend to send 'possibles' to my brother to dissect - he is a microbiologist (as well as being a good/informed patient) whereas I with my very old A-levels can't possibly understand all the variables or even some of the words

My biggest issue is often just speaking to the GP - if I could write it down it would be easier - but they don't like that at my surgery

Saying that the one time I got good/effective and quick treatment I went in with a letter as I couldn't speak (& they couldn't say "Tell me about it....")

As far as Dr Google goes I am learning:

NHS website good but superficial
Nice Guidelines great but technical
Research abstracts can be confusing always send way for a synopsis
Charity websites mixed - some are great BLF/Macmillian, some are a bit flakey
Anything connect with a book or supplements I don't even read

I go in to my appointments assertive and ready to discuss things
I use one word answers and come out saying yes doctor

It's frustrating & it makes me cross with myself

Katy I've taken to typing it all ups and editing it right down to lists of symptoms, questions and anything copied from veritable sources on the web eg nhs, patient .co.uk or the nice guidelines.

I review it carefully and edit it to make it assertive, non hysterical, business like and straightforward. Then hand it over. Seems to be helping, especially a copied table from patient co uk citing a drug interference last week. Helps to focus the ten mins you have!

Patient.co.uk is very good. Patient pages and professional references. I know drs refer to it .

I never even get them to lok at my list of syymptoms

Patient uK can be confusing & is often amix of very basic info andquite complicated stuff - so I use it with caution

I wish I could handle appointments better; it's quitestupid as I handle DD's,DH's & my dad's appts fine - it's just mine

As a GP I would probably cry if you came in with all this. This is not GP territory at all. There are cases where we cannot diagnose people. You may have to look privately further afield for someone who can help. I do hope you get help. The steroids making you feel better may be just because steroids do that. Good luck and let us know what happens
Your bloods are abnormal but I wonder if depression may be making this worse.

Oh god all I want from (my very nice) GP is a referral - but to who/what speciality. I don't expect her to cure me or even diagnose me.....just suggest someone who can

I've paid for Gastro twice the second time the top guy saw me & said I was atypical (gee thanks) but no-idea how to proceed which mad me think it wasn't primarily Gastro.

I'm hovering between either Haematology to get the B12 sorted or Immunology maybe? Or maybe even whoever deals with CFS now - last guy I saw was in 1996 & I guess things have changed. Apparently Guys hospital do a lot of work with B12 at the moment

You should get immunology and haematology on NHS easily.

A gp should refer and it is up to consultant to say it is not their area!

Thanks

I was thinking about the depression; I have clearly had depression on 3 occasions - reactive depression, needed anti-depressants all three times but only got them twice (when diagnosed with CFS, after my ectopic & when DD was very poorly).

I don't believe I am depressed at the moment, neither do my family/friends - they were very honest with me when I was depressed, so I don't see them humouring me now

I deal with other people's medical appointments fine, I deal with illness (my own & other peoples) fine, I struggle with my own appointments & I'm not really sure why

I have had CBT and counselling (counselling seemed to make me respond better) and they had their place within the treatment I was having. I don't think I need counselling at the moment, possibly just a kick up the bum to talk to the GP rather than retreat into a monosyllabic state

I went for the blood test yesterday & they had forgotten what they were testing me for

I made some suggestions & they agreed to: Full Blood count, B12, Thyroid, Folate, Zinc & Vitamin D - I hope I remembered everything

I think unless the GP comes up with anything I'll be asking to see a haematologist

Had forgotten? They sound a bit rubbish!

Has anyone mentioned low magnesium to you or have your magnesium levels been tested? The muscle cramps and pins/needles esp in the hands are classic signs. Do you find noise irritating too? Not sleeping well? Cramps in your fingers/feet and possibly intercostals? Knackered all the time? That's low magnesium.

I have Crohns and have had surgery this summer and my usually-borderline levels of mag have plummeted. Had an emergency infusion whilst on holiday in Aug and have just been put on high dose oral tabs yesterday.

Your mouth ulcers, lack of energy, joint pain and bowel issues all point towards Crohns too. A colonoscopy is only part of the story, they need to be looking at your small bowel via barium follow-through or other scans in order to properly rule out Crohns.

No one has mentioned low magnesium, I have low B12, low folate & low zinc - so I wouldn't be surprised

Do you see a gastro or a rheum for your Crohns?

Isolated small bowel Crohn's disease tends to be quite rare but not completely uncommon. Gastroenterologists deal with bowels. Some people with IBD have a co-morbidity of inflammatory arthritis and will see a rheumatologist too.

Well I saw the head gastro at the hospital and he has diagnosed a 'very fast transit time' so I doubt he will be changing that any time soon

Just had a very upset tummy after mushrooms - so my intolerance to them is firmly confirmed

Have they done any scans of your abdomen to rule out strictures and adhesions?

If you're in or near London and can afford private treatment, St Mark's Hospital is a centre for excellence for IBD. If you have it, they'll diagnose it.

They did a CT scan but wouldn't inject me with the dye as I have allergies - I don't know if that would affect what they saw

I'm not in London but I might be desperate enough to travel tbh

this is interesting but outside my capabilities I like the table thou' I can understand them

Katymac - I have non coeliac gluten intolerance. It does not express itself as coeliac and no coeliac test will diagnose it but your symptoms and the way you have been treated are identical to my experience. Low B12, magnesium, lots of IBS type symptoms and many other inexplicable symptoms. In the end I was so ill I could not walk but apparently according to doctors I wasn't ill. They even gave me antidepressants - which I refused to take.

I took advice on here out of desperation and rigorously excluded gluten. Nothing else excluded from my diet except gluten. My symptoms dramatically improved.

I now have a specialist who understands non coeliac gluten intolerance. My case has been published in the British Medical Journal. This condition is very badly misunderstood and widely disparaged by doctors but I was gravely ill. My health is permanently damaged after 15 years of trying to find a 'cure'. I now have not eaten gluten for quite a while and my health is not too bad. I am a man but basically have the body of a 65 year old woman. I have osteopenia at age 50. My spine is collapsing. That is because my gut is so damaged I don't absorb food properly. I can just about work 3 days a week. I have severe joint pain some days. My skin falls off my hands in cold weather. I have many other symptoms including classic fibro brain fog and routinely exhausted but cant sleep due to constant pain.

I know your doctor said not to exclude gluten but that is because you needed a coeliac test and you need to eat gluten to have the test. You are not coeliac though as you had the test so now you can try excluding gluten for two weeks but eat normal healthy simple food. Fruit, veg, meat, fish, eggs. Be very very careful to read all packets.

Try it for two weeks. If it doesn't work you can go back to gluten foods.

Honestly. It changed my life. I was dramatically much better in a few days and lost about 1.5 stone in 6 weeks.

Reading your above posts with more focus, the probability of IBD is most likely very low given the number of years you have been experiencing symptoms. Untreated IBD for 20 years without any serious complications is about as common as a blue moon.

Just being nosy but out of interest, why do you suspect Crohn's and not Ulcerative Colitis? I only ask as I find that more people seem to understand CD over UC and I have always wondered why.