Not taken seriously

Pixie51 · December 2020

Hi

I posted a little a few months ago when my health deteriorated and still is. I have been referred to neuro due to chronic pain, balance, nerve sensations, headaches etc etc but i had to really push to get referred. I was diagnosed with fibro several years ago but despite lots of tests never had any scan of my spine despite most of my pain originating there and sacroillic joints. I rarely go to the Doctors as after losing my son in an accident whatever i have presented with they tell me i am depressed and try to press anti depressants onto me. Nothin g wrong with anti d btw. Anyway i got to neuro last week 8 months after referral understandably with covid and neuro has booked me in for mri brain and full spine as i am just not functioning pain wise atm. I am on tramadol for pain and have been a long time. But she told me in my doctors letter that they felt it was symptoms basically in my head. I feel so crushed. Since being diagnosed with fibro i have done everything self help i can even taking up yoga and training as an instructor to help others like me. I was an outdoor active person who always worked full time and still want to but cant. I am a shadow of my former self. I have only seen the doc less than 5 times in as many years. I try my best to deal with things and only went early this year as i just couldnt cope. Sorry this is just a rant as i feel so low wondering how many people think i am making it up. Genuinely feel worthless.

janer1967 · December 2020

Hi there

I an sorry about how you are feeling and what has been said

It's about time they recognised that we know our bodies and pain that isnt normal

I hope you get some answers from the scans

Dint worry about the rant that's what we are here for

chiarieds · December 2020

Hi @Pixie51 - it's good to hear from you again. Did you not get to see Ian Pople, as I remember you saying he specialised in Tethered Cord Syndrome, which might be a possibility with you having spina bifida occulta? At least you're eventually getting a full MRI which will hopefully show what is the problem.

Do you know when you'll get your MRI? Did you have a look at the videos I sent you from the Chiari virtual conference? Please let us know how you get on......hopefully some answers soon.

Pixie51 · December 2020

chiarieds said:

Hi @Pixie51 - it's good to hear from you again. Did you not get to see Ian Pople, as I remember you saying he specialised in Tethered Cord Syndrome, which might be a possibility with you having spina bifida occulta? At least you're eventually getting a full MRI which will hopefully show what is the problem.
Do you know when you'll get your MRI? Did you have a look at the videos I sent you from the Chiari virtual conference? Please let us know how you get on......hopefully some answers soon.

Hi there

Mr Pople apparently isnt at Southmead atm. I saw Andria Merrison. She seemed really nice, I was just totally thrown by the comment from the Doctor and it detracted me from the consultation. Thankfully I had written down my symptoms and timelines. I literally have just received a copy of the letter to my Doctor saying that she is continuing with tests as the symptoms have been ongoing so long and worsening and whilst most manual motor tests she did were normal there was hip flexor weakness and it would appear nerve damage. I am going on the 12th Jan for scans fingers crossed although if we go into tier 4 not sure if that will be affected. Hopefully I will get some answers. I think I am just super down with Docs reaction and dismissal and also I have in the last few weeks lost some of my hearing mainly in one ear. I had a hearing test down privately and they confirmed there is no blockage. I couldn't face going to my docs despite it freaking me a little after knowing what she thinks. I did mention it to the consultant. They were going to check for infections as they did blood tests there when I saw them. My Doctors hadnt sent over any relevant information of previous tests I had had so consultant has requested that too. I really hope the scans give some direction as I genuinely am at breaking point.

Thank you for remembering. I am grateful. How are you doing?

Nats

Pixie51 · December 2020

janer1967 said:

Hi there

I an sorry about how you are feeling and what has been said

It's about time they recognised that we know our bodies and pain that isnt normal

I hope you get some answers from the scans

Dint worry about the rant that's what we are here for

Thank you so much. x

chiarieds · December 2020

Hi Nats,

Dr. Merrison sounds good, & has identified that you have problems which need appropriate further investigation, tho it's a shame you didn't see Mr. Pople, she does seem to be on the ball.

I do understand what you're going through..... I lost my youngest daughter when she was 23 months old following surgery at Gt. Ormond St. At the time they didn't know why she had such severe breathing problems (she needed a trache at one week old). Years later, my eldest daughter asked me to find out more. Drs. kept saying there was nothing the matter with my family when I said I thought we had Chiari 1 Malformation & Ehlers-Danlos Syndrome. They didn't want to know because of me losing my youngest daughter & I'd found out the cause of her problems. I was even lied to by Drs. being told her Gt. Ormond St. medical notes had been burnt 10 years previously. I replied that that was strange as I'd just requested them, & they were in the post to me. So, we had a bit of a time of it too. I'm very sorry indeed about your son, & the fact that you haven't been listened to either for so long.

I'm keeping OK thank you, tho not liking this colder weather!

Thank goodness you had made some appropriate notes before your consultation. I used to do the same. It's abysmal that info on previous tests weren't sent across by your Drs. It's good that Dr. Merrison is keeping you in the loop sending you a copy of the letter to your GP. I do hope you get your scan on the 12th as that's not too long to wait. You have to dig deep to keep on pursuing getting the right medical help, I know, but you certainly are getting somewhere now.

diane01 · March 2021

@Pixie51
I was the same similar story had to push my drs because he kept saying it was anxiety with me due to me going thru menopause but i kno its more deep down ended up 3 months bed bound because of pain feeling weak legs & arm spasms legs tingling all the time & shake on standing my brain felt odd started behaving odd headaches started get more daily face twitching jerking in my sleep & really bad fatigue & really bad hormone levels low mode & chest pain thats there all time honestly always drained cant do a simple task without feeling in pain or tired gets finally got the drs listen now & got to wait on seeing a neurologist but that could be 10 wks away just horrible that the drs dont want to kno or listen they think its in ur head due to what ever been happening in ur life or around u!.frustrating keep pushing for help when ur in hell with the health issues

Tori_Scope · March 2021

Hi again @diane01

It's good to hear that you're on the list to see a neurologist. If your symptoms continue to become worse, I'd suggest that you contact your GP to explain this, and ask if they could pass this on so that you can get a more urgent appointment. Were you able to explain all of the symptoms you've been having?

Please remember that you should always call 999 or visit your local A&E department if you're concerned about chest pains. If you're not sure what to do, then you can ring the NHS' non-emergency number on 111 to get advice and guidance.

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