Hi, This is my first post on here. I’ve been experiencing symptoms for around 4 years. Pins and needles in hands permanently and feet occasionally. Sleep problems, bladder problems (not able to fully empty properly/needing to go frequently) Pain in neck & spine, shooting pain down spine when turning neck. Painful Squeezing sensation around ribs/chest. Headaches. Minor issues with balance.Had a couple of Episodes lasting a month or two of reduced mobility, slurred speech, brain fog. Numbness down whole right side of body. Loss of feeling/weird sensation in left little finger which has been like it for nearly a year since an ‘episode’. The list goes on to be honest!
Anyway so I’ve had carpel tunnel diagnosis ruled out, saw a rheumatologist who ruled out sarcoidosis which I had 9 years ago. Had full blood tests several times which are all clear. Had an MRI on my neck only which ruled out a degenerative condition they suspected.
I was eventually referred to neurologist in May and have an appointment end of November.
Im worried I’ll come away from the appointment with no answers like I have from all my other referrals/appointments
. I have a list of symptoms with a rough time scale to take with me but it’s a really lengthy list.
Any tips for first appointment and can anyone tell me if it’s likely I’ll have any tests done at the appointment? Will I have to wait for an MRI appointment?
Hello
I am undiagnosed too. Been months of different tests to find out what’s wrong with me. Suspected Ms or neuropathy they have said. Waiting on mri in a couple of weeks. Seems to depend on area and doctors how it gets dealt with but my best advice would be go with a timeline and issues you have had. The more info you give them the better for you. I had all sorts on tests at my neurologist appt. I had sensory tests eye test walking tests vibration tests all sorts. But like yourself I have had a long list of symptoms but mines have come on over a space of months very fast.
Hope some of this helps you and good luck x
Thank you, I really appreciate you replying and it’s helpful to know a bit about what to expect at the appointment x
Dont go in with a long list of little things.
Concentrate on the main issues, as the neurologist faced with a long list just switch off.
A person I know on a group did that a few years ago with names of things like ataxia, gait and stuff and she said the neurolgist told her she had anxiety and had simply gone on google and copied things that you get with MS.
She was then told she had FND and is being treated for that. I think your damned if you do and damned if you dont.
My brother had sarcoidosis it can come back to bite you on the backside it did him.
I agree with Crazy Chick, hone your list down to your main issues, but it is important to include a rough timeline of how long they persisted and if they resolved fully or they only part resolved, so they get an idea of the pattern of your symptoms.
The neurologist may do a number of quick physical tests like checking reflexes, strength, eye following etc in the consultation. You may be sent afterwards to have some blood withdrawn for any blood tests they think appropriate. Any tests that are more complex would be scheduled in for sometime in the future.
Good luck with the consultation.