Being let down by Health Care Professionals

General General TN & GPN (Old Site)
1

Hello, all.

I suppose I’m using this site to vent frustration today, as I have had a pretty rough time of it lately and would just like to get it of my chest to people who understand my anguish.

To cut a long (and painful) story short, I saw a neurologist on the 18th of April who said she will order an MRI and mark the referral as urgent.
Well I waited…and I waited… Hoping each day to find the letter at the bottom of the stairs telling me I was one step closer to finding some answers. A whole month past and my pain was getting out of control as I seemed to have developed a tolerance to the medication. I had to make an emergancy appointment to see a doctor as I couldn’t cope. Also, to make matters worse, my family doctor retired a year ago and his replacement is not due till September. So I’ve been seeing a different temporary doctor each time I ago. The doctor I saw said I should have been informed to up my dose of medication and I should have had the scan by now. He said I needed to phone the neurology department and inquire about my pending MRI.
When I phoned them they simply said they’ll ‘look into it’ and I should ring back in a week.
Well today was a week, and I was in extreme pain, so much so I had to verbally express my pain in the form of a sort of screamy-growl. I was in to much pain to speak so I had to get my mother to make the call…
And here’s the best part, the neurology department said ‘oh, Dr. Pambakian has gone on emergancy leave and the request form was never sent, sorry I’ll get another doctor to do it’. When my mother asked what I was supposed to do in the mean time the nurse said ‘has she tried paracetamol?’ OH MY GOODNESS! These people have no idea how painful this thing is! I couldn’t believe nobody in that darn hospital had the sense to pick up where my Neurolgist left off and inform her patients of what was going on! Nope! I was left desperately hoping for something that wasn’t going to happen!
I had to call my GPs office and speak to a different doctor…again!
The first two said to go to A+e (ER) and I refused because I thought, what can they do for me? Absolutely nothing! I need that MRI! I need better medication! I need a decent Neurolgist whom I can trust to ensure my well being!
I feel like I’m back at square one, miserable and frustrated…and in a lot of pain, the only thing I can do is up my dose of meds and hope for that MRI and the follow up. When the pain is going full throttle and surging through my face, I’m scared. I’m scared of where my mind goes.

Sorry for the long post but I needed to vent my frustration!
So a big thank you to anyone who took the time to read this because I really needed to write it.

As usual, best of wishes to anyone going through this terrible affliction.

2

Hi Amanda,
Vent away…it helps, and you know many of us understand.
The most important thing is pain control.
MRI is important to rule out MS or possible tumours, but pain control is top priority.
Unfortunately many of us have had to advocate for ourselves AND deal with the pain, but it must be done. It’s sad really, I’ve been frustrated many times…I empathize with you.
((( hugs )))
When talking to doctors, nurses or receptionists you need to stress that you are in a pain crisis.
Sounds like the ball was dropped, I don’t know what med (s) you are on but you need to talk to the doctor that is covering for your doctor and get your pain meds sorted out.
If you must go to the ER , you might need to request a neurologist but they might be able to provide you with some relief through IV, perhaps Dilantin or something else.
Sometimes going to an ER can push your case further ahead with referrals.
It’s so not fair, I hope you get care soon and relief from the pain.
(( hugs )) Mimi xx

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Hi Amanda

So sorry to hear the rigmarole you’ve been going through, you have my empathy. Many of us here have had similar issues. The stress of it can send the pain soaring. I agree with Mimi, you need to get the pain under control. That is your priority right now, then you can better deal with starting over and getting the MRI booked.

BTW, I haven’t been on the site for over a week (some big things I needed to take care of) but I’ve been meaning to congratulate you for perusing and achieving you Creative Writing degree. It takes a lot of focus and determination to achieve big goals like that.

I hope you get the proper medical attention quickly and pain under control. Keep posting, it really helps.
Best wishes
Bellalarke

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Thank you, Bellalarke and Mimi!

Your words are really thoughtful. I feel much better today, I know I can’t be meek when it comes getting my pain under control even if I have to visit a different doctor everyday!

Thanks so much guys!

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Hi Amanda

Glad you are feeling better now. I'm in the UK and know how frustrating the NHS waiting times are!

I was lucky the GP I was with when this started had trained in Neurology and knew straight away what the problem was. I was started on Tegretol, then Gabapentin, then Pregabalin, along with some antidepressants these have helped my pain on and off over the years. I have had two MVDs and a glycerol injection. I am still in some pain but not as bad as others that I read about on this site so am thankful for that.

Try and get your pain under control. You didn't say which meds you are on but any of the above could help. Try and stay calm while waiting as I find getting upset makes pain worse!! Keep on at your GP until you get a result!

Take care.

Clare