Appointment with a neurologist

When I wrote my introductory post I included this paragraph :

I still haven't been diagnosed with ME, but I do know I have several problems in the SE (something else) category.

One of the most serious conditions I have is hydrocephalus. It was first discovered by accident about 5 years ago following a CT scan of my head for something unrelated to hydrocephalus. The CT scan was followed up by two MRI scans a few months apart (at the behest of a neurologist I was referred to), and it was determined that the big hole inside my brain is not getting bigger and my condition was deemed to be stable. So, no further testing was done, and I was offered no treatment. The diagnosis was "communicating hydrocephalus" with the possibility being suggested that I had had this condition for a very long time, probably since childhood or birth and that my brain had adapted to it.

But now that I am getting older my brain is losing its ability to adapt and cope.

My balance is poor. I would never pass a sobriety test even though I don't drink. I can't walk heel-to-toe, I can't stay upright on one leg, and if I close my eyes while standing I fall over. However, in normal walking I can usually walk reasonably well, although I have a tendency to stagger and bump into things which is getting worse. I found that keeping my B12 levels very high and eating gluten free has reduced the problem to some extent, but the deterioration is still happening.

My cognitive function is declining. My spoken vocabulary and word-finding are getting worse all the time, although my written English is still okay. I have a spelling add-on/dictionary installed in my browser that helps enormously.

I haven't become incontinent (yet), although apparently this is something for me to look forward to. Oh joy.

Earlier this year I decided that I'd been fobbed off long enough and I wanted to be referred to a neurologist again. With some pushing, I persuaded the man to refer me for further testing, and I was sent an appointment at a different hospital.

When I went for the appointment at the new hospital I was disappointed to be seen by a doctor who seemed to believe I was exaggerating or lying. But he did order a fresh set of MRI scans.

When I went for the follow up appointment earlier this month I was surprised to be seen by a consultant. He did more walking tests and obviously noticed I stumbled over my words fairly frequently. He gave me a tentative diagnosis of NPH - normal pressure hydrocephalus. Despite the name, people can have NPH with increased pressure in the brain. (Don't ask me why it has such a stupid name if pressure might not be normal!)

Anyway, I'm going to be given an in-patient appointment in hospital where I'll be given memory tests, cognitive function tests, more balance testing, a lumbar puncture with some CSF drained off. There will be an attempt to measure the pressure of my CSF in my spine before CSF is drained off, then again when pressure is reduced. Then after a certain number of hours (or a day or two?) I will have the balance, memory and cognitive tests repeated to see if there is any improvement.

If there is improvement then I may be given a VP shunt to drain excess CSF and reduce the pressure inside my head.

If there is no improvement then they will follow up by drilling a hole in my head and removing some CSF that way. Then all the tests will be repeated again.

If there is some improvement then I may be given a VP shunt as above.

If there is still no improvement then basically I will be discharged and will most likely be told I'm developing dementia and I'll be left to rot. More joy.

There are still a lot of ifs, buts and maybes, but I don't feel hopeful about the future. I'm a bit worried about the cognitive function tests and how they are interpreted. They (the doctors) don't know what I was like intellectually 20 years ago so they can't tell whether my cognitive function has reduced. (I know it has.) If they are just comparing me against some hypothetical average person they may decide that I have no loss or very little loss of cognitive function. I was a bright cookie in my youth, with an IQ over 140. If they decide my cognitive function is fine and they can delay treating me until my cognitive function has dropped below average I'll probably end up never getting any kind of meaningful treatment until the person I am has completely vanished. I already feel as if my personality and sense of humour have substantially disappeared.

 

I hope you do see some improvement

I understand your fears 're cognitive function too. I once was very bright and as my cognitive function deteriorates I can seem normal for quite a while to someone who doesn't know me. They might think I'm okay but I am actually accelerating down a slippery slope.

Husband gets it, but he knows me. In fact he pointed this issue out to me.

 

Thanks, @Invisible Woman . My husband mentioned at my last appointment (when all these plans for further testing were made) that my executive functions have got substantially worse, particularly in the last year. In other words my get-up-and-go, which was never high, has got-up-and-gone, and apathy rules. My planning ability is very poor, and I can't reason as well as I used to.

https://en.wikipedia.org/wiki/Executive_functions

I think my husband's input was the clinching factor in the decision to do more testing, which is annoying. Why can't they just believe me?

There are days when I feel less fatigued than usual, and the pain I'm in is less disabling than usual. On those days I can achieve reasonable amounts - getting washing done, or going shopping for food, or cooking. But my husband has also noticed that one of these "busy" days is always followed by several days of me feeling much worse than usual, and less activity than usual. (And I interpret this as PEM.)

 

You must have evidence of what your cognitive ability used to be?

 

I have a Master's degree in a mathematical subject. But I would be a bit pissed off if I had to dig out my degree certificate. I think it is in the cleaning cupboard, and I haven't looked at it for years, so I could be wrong. I haven't had to show it to anyone since I got my first post-university job.

 

I'm not really sure how you would demonstrate it unless you were tested back then and repeated the same test now.

Not sure this would help - unless they made you study and retake the Masters. I doubt they would know the precise levels of functioning, though they may understand the level of reasoning required.

 

I'm doomed then. I've forgotten 99.9% of what I ever learned in my degree, and I'd have to start at year 1 of secondary school level again.

I would need to see/undergo an official cognitive test to know what was involved - at the moment I know nothing about them. I haven't googled yet, and I wonder if I should.

 

I don't yet know what the timescale is for all these tests. I suspect I won't be seen in the winter because of the seasonal pressures on the NHS. I've been given an appointment for a follow-up in June next year. This has happened to me before. I get the appointment for the follow up (months in advance) before I get the appointments for the treatment being followed up. Hopefully the in-patient appointment should arrive soon, but who knows?

 

....& if you found & took one it would only tell how how you are now. Not how you were years ago.

 

I think there are two issues ...

My apparent level of cognitive function now (before anything else is done) could persuade or dissuade a doctor from recommending further testing and/or treatment. If my cognitive function seems good in a standard doctor's appointment it could dissuade a doctor from pursuing the idea of treatment at all.

Then there is the other issue of the apparent change in cognitive function before and after removing some CSF from my spine and brain.

I think my good(ish) cognitive function may have been responsible for the refusal to treat 5 years ago, despite my already appalling balance problems, plus other symptoms I had (and still have), at that time.

 

No worries, I didn't read your answer as making light of my problem.

 

I think that the cognitive testing people will have a good idea of what someone who was previously tested with a 140+ IQ would have been able to do on their own tests. You may still show well above average in many areas but that would be "abnormal" for you, and they will know that. My dad was diagnosed with nph years ago, but no shunt was done due to advanced age and other health issues. But I understand that it can be very effective in at least halting further decline.

I hope they will find answers that will lead to good treatment for you.

 

That is what I am hoping for. And I would like the decline to be halted while I can still think, am not incontinent, and can still pick my feet up when I walk (although that "talent" is in the very early stages of leaving me occasionally and my feet will unexpectedly "stick to the floor").

 

If they do say that you are 'normal' and do not need treatment, would you have access to any tests that prove what your previous cognitive function was? In this country we take tests before starting university (SAT or ACT). Do you have anything like that?

Of course the first thing to do would to be just to tell them. But if they think you are "exaggerating", could you get proof?

 

@Little Bluestem No, I never did anything like that. I did standard school exams of the type in use in the UK in the 1970s before going to university. I've still got all my school and university certificates showing the results of exams I did, but that is it.