Undiagnosed and rare conditions
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Doctor unhelpful

dazman14dazman14 Member Posts: 11 Connected
I have been to my doctors numerious times over the years with many issues I have suffer with for a long time  infact since I was in my teens I'm now 26...


Care since moving from pediatric to adult has been hell to say the least. Noone cares. I find it difficult to get my doctor to reffer me for things I and my family beleive I've gotten. As they themselves have been diagnoised already...



My sisters and mum have various things but close family relatives suffer from:

EDS 
POTS
Gastroparesis and other related digestion problems



Now I myself am convinced as is my sister who has done a medical degree in biomedical science with honors that I've gotten POTS and a high chance of having EDS.


My doctor has kindly referred me to a rhumeatologist but refused to do anything else that was requested from experience in my family care etc. He even went as far as to say he didnt know where to put me.... and one thing at  a time. Dismissing all my concerns and mums.


I wanted preventative things such as:
Gastric empty study
Tilt test
Geneticn testing 
Psychio
Occupational therapist 

Etc...


My life has been a living hell. My PIP was disallowed and I cant get the help and support regardless because everytime I try I get fobbed off or ignored. Or just it's all in my head...

 I pretty much live my life struggling to do alot of things. I want too but honest to God... I need the support to be able to and I've not even gotten that. Most days I cant get out of bed without going extremely dizzy and blackout for a few seconds (everything goes black). Its like a bloody marathon.


Now really what my question to you guys is how on earth do I get my life back on track If I cannot get the support from anybody much less proof of my problems because I am always just ignored. I cant progress further with my claim or appeal either without the proof...


What concerns me imminently is the fact my sister has progressed and I am clearly getting worse and I want to prevent myself from getting in that state before it happens. And she has warned me of that to prevent or manage it before I get that far. Its sickening that I've got to keep asking and nothing happens .



So sorry for the long post I just feel like I am spinning round and round and honestly I am at the end with it. I cant deal with all of the stress and really need some directional support. 


One of my OXIMETER readings:




Thanks

Darren

Replies

  • chiariedschiarieds Member Posts: 7,940 Disability Gamechanger
    edited September 2019
    Hi, Darren @dazman14 As far as EDS goes, I hope I may be able to help, having the hypermobile type of this (hEDS).


    This shows how hEDS is a multi-system disorder, so you can have PoTs; gastrointestinal problems, etc. which you, or other family members appear to suffer. The difficulty is that GP's do not generally understand this...if they understand EDS at all it's seen as a case for a rheumatology referral only. 

    Depending on what type of EDS you might have, if that is the case, there is currently no genetic test that will determine if you have hEDS, this can only be determined by a Dr. who understands this by their clinical findings ('tho hEDS is a genetic disorder)

    Before you see your rheumatologist, might you try to put down on paper anything you consider relevant to describe your family's problems, as well as your own, detailing other family member's diagnoses.

    I'm sorry to read about what you're going through, & your sister. If you have hEDS please know that even within a family suffering from this, there is 'variable expression' which means it will affect you all differently. This is also consistent with my personal experience as my children have inherited hEDS from me as well as my 3 granddaughters.

    Please consider joining the Ehlers-Danlos Support group: https://www.ehlers-danlos.org/ to see if they can help.

    If I can help you further as far as EDS goes, I will. Please be aware that PoTS is also a symptom of many other disorders.

    Others here will better help you as regards PIP & any benefit concerns.









  • PaddiePaddie Member Posts: 75 Courageous
    Hiya. When you see your Rheumatologist ask to be considered for a referal to the Autonomic Unit in London.
    They do an incredible amount of tests to establish POTs & other conditions.
    Hope this is of some help.....
    Bw
    Paddie
  • OverlyAnxiousOverlyAnxious Member Posts: 1,256 Disability Gamechanger
    dazman14 said:
     Most days I cant get out of bed without going extremely dizzy and blackout for a few seconds (everything goes black).
    Does it matter how slowly you get up out of interest?  I suffer with wobbly/dizziness every time I get up from bed, chair, toilet or floor.  I have to get up very slowly like an elderly person every time and steady myself against a wall or furniture for a few seconds…  I'm also quite wobbly and unsteady on my feet though, standing still is the worst, I'm better off if I can keep walking although even then I often feel like the floor is 'spongy' or like a hole has suddenly opened underneath me and I've dropped through it.  I also find if I suddenly stop walking that causes the world around me to start moving.  Plus I find lighting has a huge effect on my balance/dizziness, particularly bright lights in supermarkets or patchy lighting like streetlights, I tend to wear sunglasses all the time while I'm out to try and reduce this.

    I asked the GP about this and he just said it's because of the anxiety though (and agoraphobia when I'm out)...  I'm finding that as soon as the word 'anxiety' ends up on your medical notes, anything else you ask about automatically becomes an anxiety symptom! :|  

    It looks like we've had the same sort of experience with GP's so far, and PIP as well...  How far did you get with PIP so far?  I'm now in the process of taking mine to tribunal without any real 'proof' either.   



  • dolfrogdolfrog Member Posts: 440 Pioneering
    Hi @dazman14

    One of my nieces has one of the types of Ehlers-Danlos Syndrome (EDS) and to help her understand the issues I compiled a Pubmed research paper collection regarding these multiple types of issues. You could have a look at my Wikipedia User page where i have listed the research paper collection  in the Invisible Disability sub section of my user page
    https://en.wikipedia.org/wiki/User:Dolfrog#Invisible_Disabilities 
  • Vixster89Vixster89 Member Posts: 9 Connected
    Hi @dazman14

    There are a few things you could try.......

    I would suggest seeing a different doctor. You're entitled to the proper care so don't give up. If seeing a different doctor isn't an option, maybe try and write your current doctor a letter outlining everything that is going on. It's difficult to go into depth during the 10 minutes allocated during an appointment so sending them a letter with everything on may just make them see exactly why you need to be referred. 

    As for PIP, you can get help filling in the form if you need to reapply, asking for a mandatory reconsideration or tribunal advice from Citizens Advice. There is also loads of information on the Benefits and Work website https://www.benefitsandwork.co.uk

    Occupational health doesn't always require a referral from your doctor; depending on the services offered, you can do a self referral via your local council's website. Not all council's offer this but most of them offer help and advice for people who need care and support. 

    I wish you luck and I hope you get the necessary care and support so you can start moving forward. Keep going.

    Sending positive thoughts your way,

    Vicki
  • CressidaCressida Member Posts: 770 Pioneering
    It sounds like your GP is getting the ball rolling by the referral to the rheumatologist. Unfortunately GPs don't have limitless budgets for referrals so they usually won't refer to multiple specialties in one go. Perhaps your doctor will look at the rheumatologist opinion and work from there. Good luck. 
  • underdiagnosedunderdiagnosed Member Posts: 26 Courageous

    Hi Dazman, I'm afraid your problems getting doctors to believe you rings true with me too. I had over 25 years of doctors trying to tell me I was depressed, a hypochondriac, lying, on drugs etc, even to the extent that when I fainted in front of my GP they still did nothing about it. But there is hope. Not all doctors are like that and I have also had many positive experiences. I had to change GP to get heard, I have a great GP now who works tirelessly referring me from one consultant to the next and requesting second opinions. They are very gradually getting closer to a firm and complete diagnosis. Some of my symptoms are now diagnosed. The rest are being investigated. So please don't give up hope, it can be a long process but it can also prove fruitful in the long run.

    Although not quite right, I wouldn't worry too much about your featured oximeter reading unless your symptoms are quite pronounced. I take many readings each day/night, yours compare to some of my milder symptomatic readings. As far as I am aware (I am not a doctor but have read and asked advice on these issues), supplementary oxygen is not required unless sats fall to approx. 90% or below, and they need to fall a lot further still before they become really dangerous. Although it may not be a normal pulse for you, pulse rate is generally considered too fast if it rises above 100, or too low when it drops below about 50 or 60. I keep a written record of all my readings, with dates, times, symptoms. a good medical professional will take them seriously. I would advise that you do likewise. You can tell if they are consistent and also if they worsen or improve over time. Its also evidence that your pulse ox isn't playing up (if in doubt try a different finger).

    I'm not sure why you have blackouts, if its to do with low blood pressure ( one of my problems) the advice includes keeping well hydrated, increase salt intake and get up gradually. You could sit in bed with your feet on the floor and move your heels up and down to get the blood pumping before standing.

    Hope this helps and that things get better for you soon

  • chiariedschiarieds Member Posts: 7,940 Disability Gamechanger
    Great advice @underdiagnosed As far as low blood pressure goes, I also have found that the simplest answer was to increase my salt intake & drink more, but was reluctant to say so as had done this without any medical advice.

    I cannot remember where I read this, or was advised, but another simple trick is also to tighten your abdominal muscles before standing. As advised above, get up out of bed slowly, & moving your ankles up & down does increase the blood flow to your calf muscles, the body's 'muscle pump.'

    Sadly, despite many people offering their advice, the original poster has yet to reply.
  • dazman14dazman14 Member Posts: 11 Connected
    edited October 2019
    @chiarieds @underdiagnosed @Cressida @dolfrog @OverlyAnxious @Paddie @Vixster89



    I thank you all for your advice. I've been busy over the past few days. Visting doctor, pestering them numerious times... I've now managed to get a Referral sorted with  a cardiologist.

    I've read all of the advice and I've been doing similar things such as salt, tightning muscles and drinking more. Etc. 


    I've yet to see a vast improvement but I am keeping at it. Slowly but surely. Keeping my head up and just not thinking about it.

    By the way I did end up seeing another doctor he was saying about it being anxiety and in my head but eventually compromised and referred me after I told him the whole list of things I've wanted to talk about. 
     

    Thanks again all of you for the help. 


    Dazman14
  • chiariedschiarieds Member Posts: 7,940 Disability Gamechanger
    Hi @dazman14 Thank you for replying & letting us all know how you're getting on. Pleased to read you're making progress & are getting referred to a cardiologist. My son & I get an annual echocardiogram & see the Consultant cardiologist afterwards  just to monitor our hEDS. We both have low blood pressure; my son worse than I.

    As far as EDS goes, my offer of any help remains, & you can see how others here have also offered their advice. This is a very supportive community, so please do keep letting us know how you're getting on.

    Should you wish you could start another thread about advice needed for PIP. This isn't about any diagnoses, but rather how your disabilties affect you (as I'm sure you know). There are people here well versed with benefit claims & resources to help with them, so just please ask.
  • underdiagnosedunderdiagnosed Member Posts: 26 Courageous
    Hello again, just wish to confirm the advice about low blood pressure was given to me by a cardiologist. Oxygen sats and pulse rate is from various sources including medical professionals
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @dazman14, I just wanted to check in and see how you are doing. I am so glad to see the support you have had on this thread and I really hope you can get some answers soon! 
    Community Partner
    Scope

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