Forum

18mths and getting nowhere

Hi everyone,

I’ve been around for a while but having had a Gp & a Neurologist say ‘I’m fine’ I’ve been in the background.

A brief summary of me would be that for 18mths I’ve had & am having ongoing symptoms including

  • dropping several things a day including liquids!
  • unsteady on my feet
  • episodes of blurred vision
  • difficulty swallowing
  • struggling to get words out & saying the wrong word
  • Feeling like my whole body is in spasm & needing to stretch out

I saw my gp approx June 2014, he said def a neuro issue, either MS or brain tumour. Seen neuro (who was very flippant & dismissive) she said nothing wrong but did request MRI of my brain. I had it Oct 2014 & the result letter said ‘within normal limits for my age’ I was 41 then,42 now. Gp said its just how I am now?? Well that’s frustrating as I never dropped everything I touched for my first 40yrs!

Im at the point of going to see gp again knowing I will end up referred again (not to the same neuro!) I just feel frustrated & fobbed off!

Any advice??

Thank you xx

Hi,

I can relate to some extent, as I was not having daily problems with routine activities, like you, but I was having increasing unexplained pain in feet/legs, and was referred to Rheumatology at least five or six years before being diagnosed with MS.

I at first saw a very bright, proactive young rheumatologist, who was absolutely convinced something was wrong, although rheumatology screening showed nothing. He believed it could be sero-negative rheumatoid arthritis (RA that does NOT show in the blood), and was absolutely determined to get to the bottom of it, so did not discharge me, and put me down for a six-month review.

I turned up for the review, feeling confident I was in the care of somebody so determined, and that together, we were going to find out what was wrong.

To my horror, I discovered he’d resigned and gone back to Ireland! Instead, I got a much older and unknown (to me) rheumatologist, who completely dismissed the suspicions of his predecessor, diagnosed me with “wear and tear” (“unfortunate, at your age, but it does happen”), and discharged me with advice to rest and take ibuprofen.

This is where I can relate to being told: “It’s just how you are now”.

So I came away saddened that I was - seemingly - not ageing as well most people my age, but also relieved, because I felt that if it was anything sinister, they would have found it.

So I did my best to put up and shut up. Roll on five or six years, and I wake up with completely numb feet and pubic region.

At that point, I got referred to Neurosurgery for a suspected slipped disc. MRI showed no slipped disc, but a very eagle-eyed neurosurgeon was just about to discharge me too, when he took one last look at the scan, and spotted something he wasn’t happy with.

I think he knew from that moment it was an MS lesion, but didn’t tell me, because it was not his field, and wouldn’t have been appropriate.

Instead, he referred me to an MS specialist.

The difference from you is that, because of the earlier Rheumatoid Arthritis red herring, MS had never even crossed my mind at all, although I had suspected I was eventually going to be diagnosed with RA.

With hindsight, I cannot blame my GP for sending me first to Rheumatology, because there can, surprisingly, be quite a lot of overlap between that and Neurology, so it was an entirely reasonable first guess. With being told it was just “wear and tear”, I had no real reason to be suspicious for the next five years, and accepted “wear and tear” as a depressing but true diagnosis.

So I would say that whether you end up in the right department to begin with is largely a matter of chance. If Neurology did not see anything that concerned them (just as Rheumatology didn’t, with me), I wonder if you might have better luck with Rheumatology? Has your GP suggested referral to any other discipline?

These conditions with numerous but non-specific symptoms (i.e. symptoms not attached to any one disease) can be very hard to diagnose, and sometimes, even hard to find yourself in the right department!

I think one fault of the NHS is they do not think “outside the box” - to use a horrible, American piece of business jargon.

Each consultant seems only to ask themselves: “Is there evidence of the thing I look after?”, and, if there isn’t, to be too quick to say nothing’s wrong, and not consider whether the answers may be found in a different department. In that respect, I think I was very lucky not to be discharged by the neurosurgeon too, because he was only really looking for a slipped disc, and didn’t see one, so…

It was really only luck, or a sixth sense or something, that made him say: “Wait! There’s something I’m not happy with.”

I was almost out the door before he said that, so I could have gone home still with the “wear and tear” label.

Tina

x

Thanks Tina,

I appreciate your reply.

Funnily enough I did develop a very hot/swollen right foot & ankle about Sep time. Took about 3wks and 3 courses of antibiotics & 2 courses of steroids. I did see a rheumatologist as the gp kept thinking it was a reactive arthritis. Rheumy should be sending me a follow up appt any day. I shall quiz them if I’m back there soon.

I would be pleased if I could get a 2nd opinion on my MRI scan. I will look at the scan when I see my gp again. It’s just exhausting & frustrating getting knocked back by health professionals

Thanks x

Hi there…

Stick with it. It’s hard I know. You know when your body isn’t right. Despite what others tell you. At the same time try to deal with any stress or anxiety to combat all possible contributing factors.

Move struggled for maybe 5 years now. Under a neurologist for a bit previously for twitching disorder. A few tests run but no scans re MS. Fast forward to today. Awaiting neurologist referral again due to host of symptoms similar to yours (particularly dropping things, swallowing and unsteady). I’ve just also been diagnosed with TN. Oh I also get that spasm sensation. Muscles go really tight and bizarre buzzing feeling. Often painful spasms. Annoying me most at the moment is my balance, twitching and slight jerks…

its a long long road whatever the diagnosis. But most on here understand. Just try not to worry. And keep a diary. It’s helps.

Sorry I’ve struggled for 5years… ^^^

Thank you Trueman

Its just so frustrating to be told ‘you are ok’ the irony is I am a Nurse in a GP surgery so I know that not everything has an answer. I do belive however that we all know our own bodies and gut instinct is a powerful tool!

Thank you, Im gonna make another GP appt I think…no, I am gonna :wink:

allo. well it`s obvious that there is something wrong!

if these things had happened just one , two or three times, then you could`ve put it down to nothing serious. 18 months is a long time for stuff like this going wrong.

I would return to your doctor and say you are very concernd as this, this and this is happening on a regular basis.

A GP shouldnt be saying things like a brain tumour, or MS…it isnt their place to do so. Coud you see a different GP at your surgery?

Either way, you need to be looked at by a neuro again.

pollx

Thanks Poll

It sounded like he was very blunt with his thoughts but he is a nice chap to be fair, he made his guess after seeing me couple times. I will need re referred I feel but hopefully to a different neuro who isn’t quite as stand offish!

Ive just booked an appt with gp for 1st dec

xx