Don't know what to do next ....!

New diagnosis and before diagnosis
1

Hi Everyone

Sorry I haven’t been on here for a while - not been too good.

Just over 3 weeks ago I had a flare-up of some sort with excruciating pain down my left leg (all my symptoms to date have been in my right leg). It was as much as I could do to get to the bathroom leaning on my stick. it felt like it could be a trapped nerve, but by the following day the awful pain had gone & left me with a dull, heavy ache all down the leg.

However, I stumbled in my hall, and then noticed that I had slight foot drop and the area at the left of my calf, over the ankle, top of foot, and toes, are now numb. My foot also tends to go over to the left side when I walk.

These are all totally new symptoms. I’m not due to see my Neuro until May next year, so a friend suggested I go to A&E as I couldn’t walk properly. They examined me thoroughly, testing for compression on the spinal cord, but said they thought it was a progression of my neurological symptoms. As I’m already under a Neuro, they said I must contact him & get an earlier appointment than the one schedule for May.

I also needed more pain control, so went to my GP who increased the Pregabalin. He didn’t have time to look at my numb leg/foot, but after the allotted 10 mins, got up and showed me the door!

I then contacted my Neuro’s sec to get an earlier appointment & she kindly wrote him a note. I phoned today to see what he said, & she found the note & said he had just written one word on it: ‘No’!

So I am now in a position where my GP isn’t interested, my Neuro refuses to see me before next May, and I can’t walk properly & am not able to do my normal shopping. I live in a flat which is up 32 stairs & its so hard getting up.

As you can imagine, I just don’t know where to go anymore, so feeling a bit down. I feel everyone must think its all in my head, but the numbness & footdrop certainly isn’t!

Sorry for this being so long - thanks so much for reading. I’m grateful for you all, as ever.

Bren2 x

2

Hi Bren,

I can’t understand why the neuro won’t see you sooner, and can only assume that perhaps, with all the note passing (don’t they speak to each other?) something has been lost in translation, and he doesn’t realise you have had significant new symptoms, and that it’s urgent!

I do think you need to persevere with your doctor, making another appointment, if necessary.

Mine do have a snotty warning that if you have “more than one problem” (haha, when is MS ever NOT “more than one problem”?) you may be requested to make a second appointment.

I’m wondering how you presented the situation, when you went in? Did you talk about the pain first, so the doctor might have got the impression that was your main or only problem, or did you make clear there had been a sudden, “dramatic” change in symptoms, that wasn’t limited to having developed tolerance for your painkillers?

Just the order you present things could influence how significant or urgent the doctor perceives them to be.

If there’s more than one doctor at the practice, maybe you could try seeing one of the others? Perhaps the neuro didn’t like it that you tried to go direct via his secretary, and weren’t referred by a GP?

Tina

3

Hi Tina & Emma

Thanks so much for your replies - I appreciate your time.

I think that the reason the Neuro won’t see me earlier is that the Hospital have told him he is having too many repeat referrals & he is to cut them down. He told me that last time I saw him. The secretary also said that there were others he had said ‘No’ to when asking for an earlier appointment.

Isn’t it sad that due to cutbacks we can’t get the help we need?

Yes, there are a couple of other GP’s in my practice. It is a teaching practice, so often they are straight from med school. However, I’ll ask at the reception who are the other doctors there now. You’re both right , I need to see someone else.

I do hope you are both coping OK just now, & thanks again for your caring & valued replies.

Bren x

4

Hi again Bren,

Do try, and report back how you got on.

Your response makes me think your neuro definitely hasn’t understood you have NEW symptoms, because there’s a world of difference between someone just “wanting an earlier appointment” (I expect he gets that all the time) and having new symptoms, that might actually lead to a diagnosis.

I have a hunch the secretary didn’t pass on the info about why, and just wrote a post-it: “Wants earlier appointment”. That would explain why it got the one word answer: “No!”.

If you are formally referred by a GP, they have to put the reason, and you wouldn’t run the risk that he says no, without even knowing what the problem was.

Talking to the secretary can be a shortcut, if they are helpful. But in this instance, it looks as if vital information might have been lost. So try again, through the proper channels.

Take care,

Tina

x

5

Thanks again Emma & Tina.

I know I’ll always get good advice on here!

I’ll keep you posted with how I get on - thanks again for your time.

Bren x

6

Bren, it’s ridiculous isn’t it.

My husband took me to A/E quite a few years ago. The nurse saw the state of me and said we should have driven to the neuro hospital fourty miles away.

The A/E doc said I needed to see my neuro as soon as possible and needed walking aids.

I didn’t get to see my neuro for another six months. He said the A/E doc should have contacted him.

He then said if it happens again get them to admit you and then have them transfer you here.

You just get shoved from pillar to post and you have to do all of the work. As others have said see another GP and have them refer you.

Jacqui

x