Neurologist Appointment Need Help

[PhoenixDown]

I've got a neurologist appointment coming up soon, I need to compile as much info as possible. I'm goto to do a complete list of symptoms and my history. I need to know what to ask for, what specific tests.

 

[Esther12]

Really hard to say for just 'CFS'.

Do you have any more specific symptoms?

I was just looking at chiari problems, which are thought to be related to connective tissue disorders, and CFS like symptoms...
there are autonomic problems like POTS...
they might be able to advise you on migraine problems?

What specific symptoms led to you seeing a neurologist? Good luck with it all.

 

[ukxmrv]

You need to make sure that you see a Neurologist who knows about ME as you could risk a huge waste of time or worse a comment on your records that you have a functional somatic syndrome or similar. This has happened to a couple of people I know in the last year in the UK by NHS Neurogists.

Do you have an appointment with someone good?

 

[Sparrow]

I'm interested in this as well, as one of my doctors has referred me to a neurologist. I tend to think it's because he doesn't believe that ME is a "real" diagnosis, but I might as well make the most of the visit if I have to go anyway.

Not sure what my chances are of getting him to run any tests, but it can't hurt to ask...

 

[PhoenixDown]

It's a private consultant and I've no idea whether he is good or not, I just want a list of tests.

 

[kaffiend]

It's a private consultant and I've no idea whether he is good or not, I just want a list of tests.

If you have memory or other neurocognitive complaints, these should reveal abnormalities

SPECT scan
T2 FLAIR MRI
QEEG
Neuropsychological testing

Spinal tap for viral proteins or B12 status might be useful.

 

[WillowJ]

You can find lists of test in the Canadian Consensus Criteria (overview; html with links to pdf of abridged document) (pdf full document)

The International Consensus Criteria (abstract) (html full text) (provisional pdf)

and an extract from Magical Medicine (pdf)

several of these are suitable to print and take to your doctor, although some of them are quite long.

Your doctor might also find Jason's Eitiological Model useful. (that's the link to the abstract on PubMed, but click the free full text graphic near the top right to print or read the full text. It's in Neuroscience & Medicine, so perfect to take to neurology.)

I wish you the best

 

[Valentijn]

1. SPECT scan - studies have shown that these often indicate reduced blood flow to part of the brain
2. Neurotransmitter levels (especially glutamate and GABA) - these can have a huge impact on your perception of pain an other sensory information. They also seem to be the main culprit behind Neurally Mediated Hypotension/OI in ME/CFS.
3. Tilt Table Test - this is usually done by cardiologists I think, but can diagnose NMH if done properly. It sounds like cardiologists usually don't understand NMH, so maybe a neurologist can order it be done properly.

 

[merylg]

Include in your history...any worries you have regarding your family history eg my father had vascular dementia. He also had a major blockage to a carotid artery and needed a carotid endarterectomy.

So my Neuro sent me for a Carotid Doppler Ultrasound.

I had some recent onset cognitive issues and the above family history. I had a recent history of one febrile seizure, plus a long history of migraines (one previous basic MRI to investigate migraines). I had recent onset persistent cervical spine pain & shoulder pain. I had a history of chronic fatigue.

Neuro ordered a T2 & FLAIR MRI Brain & Cervical/Upper Thoracic spine.

I asked about SPECT and he said it was low yield. So he did not order.

He said no point requesting Neuropsych Testing before doing MRI as they would want that done first.

Hope this helps you in some way!

 

[justy]

Hi, I hope it all goes well for you with the neurologist. From what i can gather the SPECT scan is the one that is the most likely to show up abnormalities in M.E, but i have also read that they need to be read properly by someone who has a knowledge of M.E.

I was reffered by my GP to an Endocrinologist who has ordered a CT brain scan as he was concerned about my neurological problems. I havemt found anything to suggest a CT scan is useful for neurological problems but that is used for things like stroke -does anyone know anything about this? ive tried searching on Google but cant come up with much.

 

[WillowJ]

CT scan can be used to rule out brain tumor as well. Also can find flagrant brain infection.

http://www.nlm.nih.gov/medlineplus/ency/article/003786.htm

 

[Francelle]

1. SPECT scan - studies have shown that these often indicate reduced blood flow to part of the brain
2. Neurotransmitter levels (especially glutamate and GABA) - these can have a huge impact on your perception of pain an other sensory information. They also seem to be the main culprit behind Neurally Mediated Hypotension/OI in ME/CFS.
3. Tilt Table Test - this is usually done by cardiologists I think, but can diagnose NMH if done properly. It sounds like cardiologists usually don't understand NMH, so maybe a neurologist can order it be done properly.

Good suggestions! Also simple and free - a Rhomberg test!!

I know you don't want to hear it, but most Neurologists I think know exactly what we have got but won't admit to it.