Surprise the neurologist?

New diagnosis and before diagnosis
1

I have a referral to see a neurologist in 6 weeks about something notionally unconnected to MS. I have growing suspicions about MS - should I somehow get this on the agenda before my appointment? I am also conscious about being marked down as one of the worried well, particularly having read 'You think I'm mad?' – the truth about psychosomatic illness | Mental health | The Guardian.

Any advice would be gratefully received.

As for more details, see below!

Current situation

I am currently experiencing:

  1. fatigue

  2. memory loss (particularly people and conversations)

  3. cognitive impairment (concentration, spelling, word recall)

  4. urinary symptoms (urgency, frequency, poor emptying)

  5. change in bowel habits (including urgency, frequency, poor muscle control)

  6. numbness in one foot plus occassional stabbing pains in balls of both feet

  7. tingling / pins and needles (variously in hand/feet/arms/legs/head, on waking, persisting through out the day, and occassionally induced by stress/ emotion)

  8. muscle pain in right bicep

Before leaping to a conclusion that MS is an obvious diagnosis (according to Dr Google!), here’s some history too!

History

Major health events that might explain some of the above include:

a) A diagnosis of a possible heart condition in December 2013, resulting in me having an internal defibrillator fitted, due to family history and tests following a bike accident.

b) Neurological damage, i.e. a minor brain injury/post-concussion syndrome, caused by hitting my head in the bike crash in Dec 2013. A CT scan done in the summer of 2014 showed no obvious damage. An MRI scan was not done at this point.

c) Depression. I was struck by very low mood in August 2014, given counselling (Nov-Jan 2015) and anti-depressants (Nov – present). My mood improved dramatically since Dec 2014 and I am currently phasing out the medication.

d) A diagnosis of prostate cancer in autumn 2008. This was prompted by urinary symptoms which persisted following treatment in March 2009 but cleared by autumn 2014. The urinary symptoms returned in December 2014, accompanied by the change in bowel habits. Possible radiation damage is currently being investigated.

e) Mal-absorption of nutrients is also under investigation by a gastro-enterologist, mainly because of the bowel and urinary symptoms, although blood tests have previously shown low vitamin D.

Any one of these events variously explain symptoms 1-5.

As for symptoms 6-8, the tingling and muscle pains are not currently under specific investigation but may be linked to events above. In particular, the numbness in the foot dates from the bike accident in Dec 2013. In addition, I suffered severe lower back pain while in hospital which was investigated but nothing unusual found. The pain cleared up but numbness in the foot persists.

The tingling is something I noted in passing in November 2014 but again this appeared to clear up. It has become much more continuous since March/April 2015. As an aside, stress related tingling has occurred (very infrequently) over the last 35 years but has never been such a continuous symptom.

2

Hi,

My opinion - for what it’s worth - is it’s really not a great idea to hijack an appointment for one matter with concerns that are - or appear to be - completely unrelated.

When you talk about “getting it on the agenda”, you could do it the proper, formal way, and ask your GP to see if the consultant is willing to talk to you about an unrelated matter.

However, I suspect the view will be “one appointment per problem”, and if you really are having two completely unrelated problems, it’s probably two completely separate discussions - and possibly with different people, too.

Without wishing to pry (you don’t say which of the above you are already going to the neuro about, or whether it’s “none of the above”), I wonder how you can be so sure the two concerns are “unrelated”? Neurological issues are very complex, and if you have a known or suspected neurological issue already, from whatever cause (including a past accident and/or radiation damage), diagnosing or eliminating MS will be that much harder. As there’s no definitive test for it, one of the hurdles on the way to diagnosis is making sure it couldn’t be attributable to anything else (i.e. it’s what’s known as a “diagnosis of exclusion”).

With a medical history like yours, it could be quite a challenge proving there’s no other viable explanation, and indeed whether various symptoms are related or unrelated. I think probably the best thing is to discuss it with your GP. Firstly to check if they agree it’s “unrelated” to the reasons for your existing referral, and secondly to see if they think it merits a second referral - to the same consultant, or someone else altogether.

Alternatively, you could just sit tight and await the outcome of your existing referral - see if that does, in fact, shed any light on other things that have been happening, and mean they’re not so unrelated after all.

Tina

1 Like
3

Thanks for thoughts Tina.

Initial referral to neurologist based on 2&3 - memory and cognitive function, notionally linked to bang on head. Have mentioned tingling to doctor recently, and he said this could be due to malabsorbption. Mentioned foot issue when first noticed after bike mishap. He said it was least of my worries and not worth investigating at the time.

Have decided will go back to gp prior to neurology appointment, but after other malabsorption investigations happening this week. Main feeling at moment is that its hard to get medics to take a holistic approach and consider a wide range of issues altogether.

g