Been Discharged back to GP

New diagnosis and before diagnosis
1

So utterly f’d off. Just had letter from my neuro telling me that as the MRI from January and the peripheral nerve conduction tests last month were all fine, I’ve been discharged back to my gp. No diagnosis given, just a suggestion that the GP prescribes nortriptypline, gabapentin or pregabalin for paraethesia and neuropathic pain. I only saw him for a 15 minute appointment last November, before things became really bad. I spent 5 weeks thinking that my life was over, and while I am now much better, I’m still not right, but he doesn’t know that. He doesn’t know anything.

I wanted a copy of my MRI, but I’ve been told that I had to ask the neurologist about it next time I see him.

Physiotherapy have told me that they can do nothing to help the remaining weakness in my leg and partial foot drop until I’ve had my review appointment with the neuro (they can’t do anything without knowing if its neurological or functional).

GP told me that I need to discuss the numb areas of skin on my spine with the neuro, and ask if there is a link with the hydromyelia they found in my spine.

GP also told me to ask neuro if there’s any link between the chronic carpal tunnel syndrome I have in both hands, the cubital tunnel syndrome I have in my left arm (all recently diagnosed by GP), and the nuerological symptoms the neuro already knows about.

My other GP has had me keeping a symptom diary so that I can show the neurologist the range of problems I’ve been having.

In short, every other health professional involved has assumed that I would see the neurologist more than once during this whole sordid affair.

What is really worrying me is, what do I do next time? For the last 3 years now, I have been unable to do my Christmas shopping because of fatigue and bizarre things happening to my right leg. If it happens again, I am in no doubt that I will lose my job. No diagnosis=not really ill=no legal protection, or at least it does when you’re on zero hour contracts.

My life insurance policy is due up next year. I know that they will now exclude all neurological cover in it, which will leave my children no protection if I can’t work.

So fed up. I want to be properly better or properly ill. I can’t stand much more of this. Can’t even phone my hubby up to tell him, because I know if I try to say the words out loud, I’ll just start sobbing. This is so not ‘Ms Independent, Bright-side of everything’ me!

Paula

2

First off - I would give you a hug in person but, we’ll have to settle for a virtual one. The whole zero hours contract thing is…(don’t get me started).

Second - if you haven’t already, get on to your GP, and ask - no, demand an immediate referral to Neurology, I would suggest they also get on the phone to the Neurology Dept to speed things up. Don’t give in.

Make a ‘polite’ nuisance of yourself, phone them up every day to see if the referral has been made, phone the Neuro’s office to see if the appointment has been made.

It would be an idea to contact PALS, at the Hospital the Neuro is at, if you feel you need to make a complaint regarding the Neuro’s rapid discharge without a follow up appointment.

3

How upsetting for you Paula. You’ve been on a huge roller coaster ride and are now left, understandably, completely disorientated with no firm answers.

I second much of what’s already been suggested, especially in terms of utilising PALS. You can also ask for a second opinion so I’d request urgent referral to a different neurologist at same hospital or a different one. Alternatively could you pay for a private opinion? I am seeing a neuro next week privately and initial consultation will be £250. Obviously it would hugely help if you can get a copy of your MRI for this. If this was done at the hospital I suggest you contact the imaging dept and request a copy - tell them you need this as you are seeking alternative opinion. I think they’d probably be a small cost associated.

Sending you virtual hugs too.

Take care

Jane x

4

Oh dear, Paula, what an example of “buck passing”.

  1. Do take the advice from TeresaB.

  2. See if there is another neurologist/hospital that you can be referred to. Even go private if you have to, to get seen quickly,

  3. Take note that an NHS Physio can refer you for (as an example) FES assessment. This could help with your drop foot. However, it does seem that some NHS Professionals are more interested in closing a file than in actually doing something to help the patient. Helps their work record, I suppose, (another good reason to involve PALS).

Don’t let them get away with it!

Geoff

1 Like
5

You have every right to have a copy of your MRI or any other medical reports. Its called a SAR - subject access request.

Its your legal right

6

I always suggest reading the NHS Constitution.
It can be a pain to read through, but you can then quote section and page numbers when making an SAR.

My GP surgery have just slipped onto their website that you can get to read some of your records online - just apply to the reception staff. Guess what is now on my “To Do” list?

Geoff

7

Remember that the NHS Constitution only recers to England. The situation in Scotland, Wales and NI is/might be different. Remember to quote what refers to where you are!