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?

Sorry to come back late, our internet has been off all day.

The only two symptoms we haven't experienced are the vision ones, although three of us are short sighted, my son is severely short sighted with no peripheral vision.
And, no problems with miscarriage. But I do have extreme heavy periods, fibroids, etc.

Getting a EDS/HMS will not be easy, it has taken me years of fighting for my children - only two have an official diagnosis, but the Paediatrician refuses to write it in their notes. I will be taking them for private genetic testing when I can afford it.

And, there is no cure. But gentle physio/hydro may help. And lots of pain killers and hot water bottles. Stretchy skin is not a feature of all EDS, my son has stretchy skin, but my daughters and I not so much...however, we have had all healing/scarring issues. It varies so much between each person.

Sorry that is not very cheerful :( My children are really going through a tough time lately, chronic pain, fatigue, dislocations are just the tip of the iceberg.

Autoimmune diseases tend to present themselves with quite obvious clinical signs e.g. Crohn's can be seen on a colonoscopy, Lupus via blood tests (negative bloods Lupus is very rare) and RA via visible joint inflammation. Is there any reason why you are suspecting autoimmune?

My Brother has very severe Rheumatoid Arthritis

My Doctor thinks it might be something auto-immune, but she isn't sure what or how to proceed

I don't know but it is frustrating that I have 3 separate conditions (plus several others) which are all discreet & individual when together they are similar to an AI. I have joint inflammation randomly & I have been diagnosed with viral arthritis on 4 occasions

I think Crohn's unlikely as I have had the colonoscopies - but I do think it's a something - what I don't know

I'm not sure it's helpful to think of things as 'autoimmune' as they are all so very different. You said you have health anxiety, I wonder how much head space this takes up for you?

Enough that it's been neglected for several (many) years because other stuff comes up

Look when my bowel is out of control I have more joint pain & mouth ulcers

If my joint pain is bad I get more fatigue, my bone pain seems to vary as does my neuralgia

The B12 is helping but only short term (so much for loading doses) - the GP has ignored the low Zinc that oral health think is important.

Long term the exclusion diet cannot be doing me any good & I'm losing weight all the time

The Gastro has diagnosed me with a 'fast transit time' which I think is a symptom not a condition

ME/CFS isn't a diagnosis imo it's an absence of anything else & tbh that's how I feel about FM & IBS too

Something is out of kilter in my body & I'd quite like to know what; non-specified auto-immune is the best my GP can come up with, so I'm running with it (it's marginally better than the 4 years I was told my pins & needles and pain was depression and it turned out to be FM)

Have you been tested for auto immune thyroid disease? TPO and TgAb antibodies? That would potentially explain the CFS/ME/FM/IBS symptoms
and there is a tie in between thyroid disease and vitamin and mineral deficiencies.

I was diagnosed with IBS and then with CFS when I actually had an underactive thyroid and multiple vitamin and mineral deficiencies. I am now well.

I don't think your GP is being helpful in respect of suggesting you have an AI disease because if your immune system is not working, you need medication or you will experience damage. I don't think there is an autoimmune disease specialist as such but perhaps an immunologist...? en.wikipedia.org/wiki/Autoimmune_disease This outlines very clearly that most AI disease have clear clinical signs, many of which include blood tests.

Have you seen a rheumatologist? They should be able to rule out/in any rheumatological related disease; mixed connective tissue disease, rheumatoid arthritis, systemic lupus and others. At least if all antibody tests are negative and there is no active synovitis, you can put that one to bed.

I agree with rockin. Currently recovering from a very slight dip in my thyroid medication and the pain and fatigue has been unbearable. Physio suggested fibromyalgia; symptoms just slightly starting to ease after 2 weeks of a dose increase.

My symptoms seem to be a mix of hyper/hypo so maybe Thyroid isn't a good match

My Brother's ESR/CRP are never high but his anti-CCP is always through the roof - at one time it was the highest recorded in Sweden

My ESR & CRP are changeable - but GPs can't do anti-CCP in the UK & the rheumatologist wouldn't after he had decided on FM

At least B12 treatment has started, Zinc will be discussed (as the hospital told me to) I just hate saying I've done research......they really don't like it

& tonight the cramps, burning and pins & needles in my hands and feet are horrendous

I could cry

I never say ive done research, i open with - i've been speaking to my friend who is a nurse with a similar condition and she suggested...

sorry, missed your second post when i posted

:(

Just want to say btw, my psoriatic arthritis doesnt show on any tests, its just that i have psoriasis and had pain and visible swelling (swelling that follows the exact patterns expected for psa too, so cant just be the hms/eds). My blood tests were completely normal. I'd guess thats why that and other sero negative arthritis' can be hard to diagnose??

Still in pain today - thanks

I'm not sure how readily available they are on the NHS but isotope bone scans will show if you have any joint inflammation.

Pins & needles might be B12 - so haemotologist, but might be neurological - so neurologist
If it's B12 it is likely to be the bowel issues that have caused it, so a gastro? Who I've already seen (& been discharged) and says it's a 'fast transit time'
Joint/bone/soft tissue pain is rheumatologist who I've already seen (& been discharged) who says it's FM or CFS and I was told to 'get on with it'

I get so frustrated - if I attend the CFS clinic I'll get CBT & graduated exercise, which they know will make the FM worse......but they won't have me anyway as they didn't diagnose it

Thanks myfairyking - I'll look into it

A mixture of hypER and hyPO thyroid symptoms suggests Hashimoto's Disease (auto immune thyroiditis) The main, and irrefutable, diagnostic for this is positive TPO and TgAB antibodies. If you have not had these tested, I would suggest that you ask for this to be done.

But they aren't the symptoms I have

Oh God is it any wonder the GP despairs of me

I really think that you would benefit from seeking some decent support to manage your feelings around your health problems. I'm not saying this to be judgmental, I have chronic health conditions that have ricocheted my world and I have had therapy for it. If I could afford it, I would return again too because it is damn hard.

From what you've posted on this thread and others, you come across as very concerned about your health needs. You have seen specialists and had tests and - to an outsider - it seems like you're struggling to come to terms with the diagnosis that each specialist has suggested. CFS, Fibro, IBS and similar are bona fida diagnoses that would benefit from research to understand their etiology better but as it stands, they are not wishy washy 'labels'. They are collection of symptoms that make up poorly understood syndromes and often co-exist.

I've noticed on online forums that people get confused with this autoimmune label. The diseases are all so very different hence why you cannot have a general unspecified autoimmune disease, it doesn't mean anything. Even undifferentiated connective tissue disease (UCDT) has a specific set of signs and symptoms. The common ground with them all is that the immune system is over active and that very often, immunosuppressant medication is needed to prevent tissue damage.

Perhaps it's time to focus on improving on your quality of life and living with your symptoms rather than seeking out an elusive dx that probably will never 'explain it all;. Life is rarely like that. I developed a GI condition after years of a physical illness and I so desperately wanted them to be related. I didn't want yet another condition but bodies don't play ball. We are humans, we don't fit neatly into little boxes of symptoms and diseases.

I'm not saying this to be nasty. I am not denying your health problems. They are real, you have been diagnosed. I just am not convinced that this search for a diagnosis is good for your general well being. I am neither denying that some health problems are hard to diagnose and take many years but this isn't new to you. I wonder what you are going to gain out of pushing and pushing for something that may not be there.

There are numerous ways of managing, coping with and learning to live happily with health problems. It doesn't make them go away. It makes some days a little more bearable. Be kind to yourself and please don't take this as an attack on you. I'm sure you a lovely, kind and generous person and I know you are more than the total sum of any labels from doctors and any health problems.

TBH the only reason I'm stressing about what to call it is because they seem to be unable to treat it

The muscle relaxants make my IBS worse
The anti sposmodics make me constipated
The pain killers totally stuff up my guts
The pain from the mouth ulcers stops me eating what little food I'm still allowed
The diet they put me on is soul destroying & causing vitamin deficiencies
I'm losing weight fairly constantly for the best part of 2 years & I don't have a lot left to lose

& the GP doesn't know where to refer me

The gastro & rheum guys won't treat me - the dietician & Oral health insist I need treating, but they aren't sure by who as it's 'outside of their remit'

So forgive me for sounding out on MN to try & find some direction?

You've hit the nail on the head there, they still may be unable to treat it though. It may not be one thing. What if you keep seeing drs, having tests and they all conclude the same thing, when will you stop trying to find direction? Sometimes we look in the wrong places for the things we know we need.

If you hadn't seen any specialists and had absolutely no tests, it would be a different story. It sounds like your GP surgery have been pro-active, have referred you and have tried.

But OP you said this upthread:

"My symptoms seem to be a mix of hyper/hypo so maybe Thyroid isn't a good match."

I've made my symptoms bold (I hope)

Under active:

<strong>tiredness</strong>
<strong>being sensitive to cold</strong>
weight gain
constipation
depression
slow movements and thoughts
<strong>muscle aches and weakness</strong>
<strong>muscle cramps</strong>
dry and scaly skin
brittle hair and nails
loss of libido
<strong>pain, numbness and a tingling sensation in the hand and fingers</strong> (carpal tunnel syndrome)
irregular or heavy periods

Over active:

hyperactivity
mood swings – such as anxiety, irritability and nervousness
difficulty sleeping (insomnia)
<strong>feeling tired all the time</strong> (fatigue)
<strong>muscle weakness</strong>
<strong>needing to pass stools (faeces) or urine more frequently</strong>
excess fats in your stools – which can make them greasy and difficult to flush down the toilet (steatorrhoea)
<strong>sensitivity to heat and excess sweating</strong>
<strong>unexplained or unexpected weight loss</strong> – despite having an increased appetite (though in a small number of cases, the increase in appetite can lead to weight gain)
very infrequent or light periods, or periods stopping altogether
infertility
loss of interest in sex  

Plus my periods alternate between light and heavy (irregularily)

But the Hashimoto:

<strong>fatigue</strong>
weight gain
constipation
dry skin
depression

So it's not really a good match is it

Myfairyking

The Gastro said my problem wasn't primarily gasto
The rheuma said FM & CFS are different but the same

Oral Health have said it needs treating but they aren't sure by who as have the dietician who thinks I'll have to come off the exclusion soon as it's not safe

B12 is a possibility but I actually think it's a symptom of my gastro problems rather than a cause

I'm really not very well, it's affecting my work in a way it hasn't for 10-12 years and it's affecting my life again after years of not doing; I don't think it's unreasonable to want to try & fix it or at least reduce the symptoms which cause me the most inconvenience

MY CFS guy (back in 95 said my hypothalamus was 'out of kilter' whatever that means.....so maybe we are back to that

I don't believe anyone is doubting that you are clearly unwell. I just wonder why you are disbelieving of your diagnoses when they are indeed very real and recognised conditions.

They are generally thought to be syndromes; a collection of symptoms added together to make a 'condition'. In other words they don't know

There isn't a specific cause & there won't be any time soon as they aren't being researched into atm