Should I give up pursuing a diagnosis?

[OliveRanch]

I’m 32 and have been struggling with fatigue and a number of other symptoms for the past 18 months. After several years of pain I was diagnosed with endometriosis via a laparoscopy at the beginning of the year. I was hopeful that my other symptoms might lift once I recovered from the op but unfortunately things only seem to be getting worse. NB I have never had Covid.

Recently I have started to experience joint pain, throbbing and stiffness in my hands, feet and hips. Sometimes I feel fluey and have generalised muscle aches, so check my temp thinking I have Covid and find I have a fever, but Covid tests have all been negative. I also suffer from hot flushes (negative for menopause), transient night sweats, allergic rhinitis, patches of dry skin and dry eyes. I suffer from an unusual and chronic skin rash called erythema annulare centrifugum which is associated with autoimmune disease and other underlying conditions.

I’ve seen my GP about this a few times but haven’t really got anywhere. My FBC results are OK, no deficiencies. MHC usually elevated for some reason but the dr said this isn’t anything to worry about. Thyroid results fine. POTS test negative. ANA negative (which seems to rule out lupus), intrinsic factor negative (rules out pernicious anaemia). As far as I’m aware I haven’t had rheumatoid factor checked, not sure if anything else would be relevant.

Ultimately they’ve just put it down to a combination of my history of trauma and endometriosis, but I’m not convinced. I feel so physically awful and don’t have the energy to do anything, even the things I love to do. My dad had two autoimmune conditions and I wonder if I too might be developing one, but I’m afraid to go back to the GP in case they write me off with health anxiety.

I guess my question is, how long is reasonable to keep pursuing a diagnosis? I don’t want to waste any more of the GP’s time but equally the thought of continuing to live like this with no explanation makes me feel so sad. I am currently studying in a medical field but wondering how I’m ever going to keep up with the pace once I qualify.

I agree with some people never actually fitting known conditions. My dad never had a diagnosis even though seriously ill, he was an inpatient for a year! Was having chemo but no diagnosis. He saw the top guy at Addenbrooks which is meant to be one of the best for auto immune stuff. That consultant said he believes there’s more autoimmune diseases than we currently have classified.

def push for a referral though

Alongside pursuing a medical diagnosis, would you consider looking into some whole system health?
This book https://www.goodreads.com/book/show/648407.BetterHealthhThroughNaturallHealing is brilliant.

Also the film (free on YouTube) Fat, Sick and Nearly Dead https://www.rebootwithjoe.com/joes-films/ shows how our bodies can get sick like this and can heal (you don't have to be fat for the same issues to happen).

Another way to reset could be at a place like suradetox.co.uk

Any update?

@SweetyGreen yes, thanks for asking. Things are moving forward although I still don’t have any definitive answers.

I’m not sure if you saw my other thread I posted a few days after this one where I posted about my legs going numb www.mumsnet.com/talk/am_i_being_unreasonable/4604850-handhold-please-ae-after-sudden-numbness?page=1

I saw a neurologist a few weeks ago and had various tests. They found I have Hoffman’s reflex on one side and some other hyperreflex (can’t remember which) so they ordered an MRI of my spine and head. I had the spine MRI last week and should be having the head MRI soon.

Since the first episode I’ve had another couple but not as severe. It’s like I’m not fully in control of my left leg when I’m walking but it passes after a few days.

I think it’s had quite an impact on my confidence as I’ve gradually, without meaning to, become pretty reclusive. I’ve also felt quite depressed at times which hasn’t helped with the reclusiveness. Obviously I’m worried, but perhaps my biggest worry is I have no one to help me if I become unwell and all of this has highlighted the isolation I feel around not having parents, siblings or partner. Just wish I had some family support.

I’m not sure when I’ll get the MRI results but in the meantime I’m just trying to go about my life (albeit a bit rubbishly) and not dwell on it too much.