Neurology appointment a bit of a let down

New diagnosis and before diagnosis
1

Hey everyone, new lady here. I know you get oodles of questions from newbies so I’ll try to keep it brief as possible.

Long story short, over last 18 months have had:

pins and needles/electrical feelings all over ,heat sensitivity, weird twitches/pulsing feeling in muscles, shocking pain in upper back,Lower back pain when walking, cold patches,shaky hands, memory loss, co-ordination has gone to pot, constipation and frequent weeing, achey body, blurry eyes with stabby pains, dizziness,Tiredness and so much more (fun stuff eh?)

Been trying very hard to get an answer as to what the problem is. Have had the ana and other bloods test, back and knee xrays, and ct scan. All clear. I’ve seen a Rheumatologist (waited 2 months to be seen for 20 mins!!!) who said it ‘seems like Fibro’. GP said it didn’t sound right. There’s been no mention of MS and I really don’t want to self-diagnose but after 18 months I started to look into it myself and it seems to fit.

She reffered me to a neuro who I saw today. ( read Rizzos advice beforehand - thanks!) He was a lovely man but again I was only seen for 20 mins and there was no examination, he just read my folder, asked some basic questions, and said it was most likely Chronic Fatigue Syndrome, but he’d send me for a head and neck mri anyway. He said its stress related and to talk to my Psychiatrist (I have never seen one and Im not depressed?!?!)

I feel like Im being fobbed off by Doctors a bit. My questions are, should I mention ms to my gp or would I sound like a hypochondriac? and was this normal for a neuro appointment?

Any further advice would be lovely xx

Sarah

2

Hi Sarah, sorry to hear it was a bad experience. Welcome to the fobbed off as stressed club! You’ll see on here that it seems to be a stock answer from neuros and many of us are in the same boat. But take heart, at least you are now going to get an MRI. If you follow the others on here you’ll see bit by bit their story unfolds and they start to make progress towards an answer, but yes it takes a long time for most and is very frustrating. I feel for you, it’s horrible, like you i know i’m not suffering from stress, or at least i wasn’t when my symptoms started. The dx process is stressfful in itself though. really hoping you start getting some answers soon xx

3

Hi Sarah,

I’ve got to be honest and say self-diagnosers probably aren’t doing themselves any favours in most GPs’ surgeries, as they are more likely to earn themselves a label of neuroticism or anxiety - which of course, in extreme cases, CAN cause similar symptoms - so the label can become self-perpetuating. The doctor perceives you as an anxious patient - you have symptoms consistent with acute anxiety - so the doctor sees no reason to look any further.

Any of your long list of symptoms could be associated with MS, but that doesn’t mean they are. One thing that is not typical of MS is any symptom being “all over”. MS symptoms are very specific to which precise parts of the central nervous have been damaged, and, as such, are very rarely “all over”, as that would imply everywhere was damaged. Very unlikely! Even though damage does tend to accumulate over time, so you might have quite a lot after several years, there is some healing too, so symptoms still wouldn’t be “everywhere”, all at once.

20 minutes actually sounds quite long compared to the majority of neuro appointments I’ve had, so I don’t think you were short-changed on the time (unless I’ve been very unlucky, and always had less than my due). I’m a bit surprised there was no kind of physical, though. When I was first investigated, I had a complete neuro exam - pinpricks, the little hammer, whether I could feel hot, cold and vibration, balance and coordination tested - the lot.

I’m not quite sure why you wouldn’t be examined as standard, but a lot depends on what your GP wrote in the referral letter, and what investigations she wanted you to have. I don’t think you need to propose MS as a possibility, because if you’ve been referred for a head and neck MRI, that IS what they’re looking for (among other things). So I don’t think you need to move them in the direction they’re already heading.

Although MRI can’t 100% prove you have - or don’t have - MS - it’s by far the most powerful diagnostic tool available at the moment, so the results of that are likely to be very telling in what happens next. If it shows no abnormalities, it would make it unlikely - but not impossible - for you to have MS.

I’m a bit concerned the neuro appeared to be under the impression you have a psychiatrist! Have you ever been referred to one, even if you declined to go? It certainly seems an odd thing to say, unless there were something in your notes about it, as I don’t think most patients would be assumed to have a psychiatrist, by default!

Tina

x

4

Thank you both for the starightforward advice and support.

Tina, regarding the neuros question about a psychiatrist, I did have CBT sessions about 6 years ago, but never ever been asked by my gp to see one. Still unsure about that one! I see that you are right about waiting to see the mri results and letting the doctors going from there, there’s no point in badgering them and making myself look neurotic.

As for the pins and needles/electric feelings, I do have them in arms, legs back and scalp, but I didn’t know that was inconsistent with ms.