Waiting ... horrible waiting

Hi everyone,

I just joined today after having visited this forum several times recently and found it extremely illuminating.

I’ve had tingling in my left hand and foot since ~Aug 2018, and started experiencing some left eye discomfort around the same time. I’ve been to my GP about it 3 or so times, and he sent me for a brain MRI and referred me to a neurologist. MRI was in Dec, and neurologist app’t was this past Thurs (Valentine’s Day.) My GP actually brought me in to discuss my MRI results and told me that it identified sinusitis (which I found sort of a relief … perhaps that’s why my eye/face had been bugging me?), and that there were some spots on the MRI but not to worry about them – they were from bumps to the head or migraines. (I don’t recall ever having migraines, and only the odd very severe headache when I was ill.) We did talk through a lot of recent stress I’ve been having in my life – my father was just diagnosed with lung cancer, and I have two young children and a stressful job. He prescribed me medication for anxiety (I didn’t fill the script). After this appointment I was so happy and hardly felt my symptoms - I was more myself than I’d been in months!

Then I had the neurologist appointment. He put me through all the physical neuro tests – he didn’t say how I did, but they felt fine? Asked about family history of strokes at younger ages. I told him about long standing neck issues. He said I have six white spots, which is “on the high end of normal” for my age (I’m 40). He said they usually give an allowance of about two per decade over 20. He’s going to do the nerve conduction tests in my arms and legs in one month, and sending me for an MRI with contrast in June, so a good 4.5 months from now. He’s also sending me for blood tests, including B12, ANA, lupus antibodies, etc. He cautioned me that we might just not find a reason for anything, even after going through these tests. He never mentioned any potential conditions that I might have, or what specifically he’s looking for. He just said we’ll try to rule out the easy things (carpal tunnel, etc.) and then the bad things. By the way, I hated the phrase “the bad things”. :frowning:

Since this appointment I have been an absolute wreck, barely able to function. My symptoms are turned up to 11. I’m feeling tingling in different places, I feel weak and my legs are wobbly. Brain is foggy, and I’m always turning thoughts over in my mind. My eye is bugging me. I’m nauseous, can’t eat. I can’t afford to lose weight. I can barely focus on a TV show or a conversation. I know I didn’t ask any good questions, I mostly sat there like a dummy. I had seriously considered cancelling the appointment because I knew it would just open a tin of worms, more questions, no answers. I filled the prescription for the anti-anxiety med, and have started taking those hoping to even myself out a bit.

I don’t know what to do, and how to deal with this uncertainty. All I can do is catastrophize. I don’t know how I’ll work this week, and I’ve already reduced my hours a lot to help deal with the stress. I am tempted to see if I can see the neurologist again, even for a quick 10 min appointment, to run through some questions. I am considering going back to my GP and seeing if he can refer me to a therapist. I don’t know what to do.

Would appreciate all and any help; feeling very alone.

Oh blimey Mica. This is the reason why a) GPs shouldn’t interpret MRIs and b) why you should always take someone with you to a neurologists appointment.

I call it neurologistitis, when you sit there in front of a doctor understanding everything, nodding your head, failing to ask questions and leaving the room wondering ‘what the *** just happened?’

It happens a lot.

It’s really not surprising that since the neurologists appointment, you’ve been a mess. The fact is though that nothing has actually altered since the GP appointment. The spots on your brain scan may mean nothing or something.

Essentially, GPs cannot read MRI scans. It’s not their fault, but they shouldn’t be asked to. Equally neurologists should develop some interpersonal skills and figure out when someone is in meltdown in front of them.

Try your best to put the whole thing to one side I know, easy to say, hard to do, just try. See if you can get an earlier MRI date (phone the MRI department of your hospital and/or the neurologists secretary - see if you can be shunted up the queue a bit). But see if you can just get on with your life.

Keep posting on here, we do understand what’s happening to you and will do our best to help.