• Replies 8 replies
  • Subscribers 31 subscribers
  • Views 105 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Does having undiagnosed conditions affect you?

RachelO

Hi everyone, I have been thinking do any of you have conditions which are undiagnosed that makes it more difficult for you in anyway. I know some of you are still waiting to be diagnosed for a neurodivergence and the wait for that can be very difficult. To wait for a diagnosis can make some people not able to properly move on with their lives. I needed to put mine to the side when I was waiting so I could free up my mind and move on with my life.

I have been reading and some of you seem to have undiagnosed conditions which you struggle to be diagnosed for. I am thinking for things like allergies or dyslexia. Me, I have been diagnosed with an allergy by bloods and it was helpful for me to have this as my near constant y allergy year round stumped me and it turned out to be a dust mite allergy which my notes say I had since a child. My father took me to a consultant as a 2 year old about this. It seemed to go missing and I didn’t get properly diagnosed to adulthood for it. The allergy can give me what looks like tics at times I think with irritation on the body and tapping it and word expression at times-and the sensory is on top as well. The treatment that I get for having an allergy diagnosed is an anti histamine. I get peace of mind by knowing officially. I thought I might be allergic to other things but I wasn’t officially in the test. I am noted as having a lactose intolerance in my notes as well though, but that is not an allergy.

I also thinking I could have a learning difficulty perhaps dyslexia because I have a tendency to leave out words I thought I have written and can miss some even when I have read what I have written back. I type in word sometimes and that helps.  I have struggled with grammar since a child. Also, I may have something called hyperlexia. I was meant to be screened for dyslexia but I haven’t heard anything from them for a while.

I am also diagnosed with Reynaud syndrome and finding out was helpful because I get bad circulation problems especially when it is cold.

I just discovered about joint hypermobility and it is possible I could have this-I tend to sprain and dislocate it seems my hip quite a bit, sleeping position probably doesn’t help. This could be though also due to osteoporosis tested by a DEXA scan and a history of anorexia has may been not helped. I could do the splits till my 30s and a bit out of practice now and always had bendy thumbs and can do at least probably four things on the test which is needed for my age.

I was wondering  if not being diagnosed for some things may be affecting your wellbeing in anyway and if so is there anything you can do to get diagnosed that we could help with? At times people can seem a bit stressed and I was wondering if unknown conditions may be adding to it.

  • in reply to TheCatWoman

    I suppose you have looked at all the websites around you the departments. You have written you don't like computers very much, so I thought I would check. I don't know your trust though but if you cannot refer someone somewhere as a GP then you can send them to a private hospital to do a test. Perhaps book an appointment on the phone and speak with a GP again.

  • in reply to RachelO

    No there aren't any hospitals near here that have allergy specialists, I'd probably have to go to Liverpool or somewhere I can't  easily get to without a panic attack. There are three hospitals north Wales and none of them do allergy testing, theres a shortage of allergy specialists across the UK 

  • in reply to RachelO

    Yes, it is, I could quite easily claw my skin off as I get really itchy, particularly when I'm stressed or overly tired. They prescribed industrial levels of antihistamines in hopes to dampen in down which didn't work, now they are giving me a 300ml injection into my abdomen every 4 weeks, which is as fun as it sounds.

  • in reply to Hergé

    I just looked up MCAS, that sounds difficult. When I was 21 in hospital I had a high ESR and they was always trying to get to the bottom of it. I spoke to a GP today and they have sent  me for bloods to eliminate other causes of my issues with sprains and being perhaps hyper mobile.Depending on the bloods I would see a physio to diagnosis I guess if necessary. 

  • in reply to TheCatWoman

    I am glad to read that your GP does go by their diagnosis for you. If you have local NHS hospitals within a decent distance-may be you could ring them and see if they do testing for allergies and then if you do you could inform your GP. I myself have called different NHS blood labs before to check overdue blood tests so I know they can be contacted. You should be able to have it. If that fails may be speaking to your GP again and telling them if you haven't what you go through and I hope they can do something.

  • I've got various joint pain issues which probably come from being extremely bendy when I was younger, possible MCAS which manifests as chronic urticaria (hives), and an autoimmune condition,I have low iron even though I take iron supplements.

    My ASD and ADHD-i diagnosis came about as I have difficult to treat depression (TRD) which is still a major issue in my life.

  • I have loads of allergies and intollerances, I've not seen an allergy specialist sinse I was a small child. Many of my allergies are self diagnosed or have been diagnosed by a GP, but having a proper allergy diagnosis would make a huge difference when dealing with some medical staff, who simply refuse to believe me and try and give me things I can't take and then get angry with me and say I'm refusing treatment as if they can punnish me into taking something that will make me differently ill or won't work at all, things like vallium have no effect on me. Allergy specialists are so thin on the ground My GP said he wouldn't know where to send me.

    I wish there was a difinitive diagnosis for fibromyalgia too, it's a diagnosis of exclusion rather than inclusion, which means many don't believe it exists at all, let alone what to do about it. It's another one where you're tentatively diagnosed and left to manage as best you can.

  • As I observe tge world, I'm not sure if a diagnosis would really help me, maybe only bring some clarity. I always call myself inferior to others, my biggest dream was becoming like others. Now im tired of everything. My therapist suspects me autistic,  I'm waiting for assessment. At least now it's a bit clearer for me, why I have so many misunderstandings with others on daily basis and it's easier for me to manage my needs since I have a language for that.