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What to ask my neurologist?

Hi

I’m new here. I’ve emailed a query to the support line but just realised it could take five days for a response, so thought I should try my first post here.

I’m currently under investigation for MS. I’m 59 and so a bit ancient for diagnosis but, looking back, there may have been things happening which weren’t picked up as significant or just attributed to other conditions.

My MRI (which I had in March after seeing a neurologist about what I expected to be peripheral neuropathy as I had burning/tingling toes and feet) showed “multiple subcortical white matter lesions, some being in periventricular location. There is also a focal white matter lesion identified in the right pons. Overall these findings are in keeping with possible inflammatory demyelination”.

I’ve had a lumbar puncture which was normal.

I’ve had slight pain on movement of my right eye for a couple of months (and had a previous brief episode of this) and over the last few days blurred vision in this eye. I’ve just had severe viral conjunctivitis in this eye and expected the loss of vision to be related to this. Yesterday my optometrist said he thinks it’s down to optic neuritis and has referred me urgently to opthamology.

Due to see my neurologist on Monday. I know he wants to do another MRI with contrast and he doesn’t yet know about my eye problems and other recent symptoms (most notably kind of electric shock sensations which I also had last summer). As it’ll probably be another 5 months before I get to see him again, I want to be sure I make the best possible use of the appointment.

What should I be asking/discussing?

I’d really appreciate any advice you can give.

Many thanks

Julie

hi julie

firstly, you are not ancient, i was diagnosed at age 50 ten years ago.

like you i remember strange things happening way back to my teens.

write down all the things that have concerned you since your last appointment in march.

everything because things that we think are insignificant can mean more then we believe.

if you think you might get flustered take a friend with you to prompt you.

this friend can also help remember what was said.

make sure you talk about the optic neuritis.

discuss any treatment that could help.

i wish you a good outcome.

carole x

Thanks, Carole.

Have trained my husband up to be my wing-man. He has a rubbish memory but is good at taking notes , so hopefully, between us we’ll be clear what we’ve been told.

After the lumbar puncture was clear, and MS diagnosis seemed less likely, it was weird to be told I’ve possibly got optic neuritis. Safe to say - I’m pretty discombobulated by all this.

Julie

Hi, I’m awaiting diagnosis too and I’m 59, not too old Im told! Hope all goes ok on Monday. Write down your symptoms,however small and any new ones recently and how long they last etc. Ask about what your scans mean. Ask if he thinks its Ms…best to be direct. Good got someone with you, my mind goes blank when i see a dr!! If wants another MRI with contrast ask when likely to be and best way get results, I’m sure you won’t be waiting 5 months for the results. Take care.

Thanks, Jules

it’s been 5 months between my last MRI and this upcoming appointment. The only reason I know what the scan showed is because I made my GP harass the neurologist for information. Apparently I should expect to wait 3-6 months for what they consider to be a ROUTINE(!!!) callback.

Where are you at with your diagnosis?

julie.

i was diagnosed in october 2008, the week before my 50th, that makes it my 60th this october.

your gp is so very important when you are awaiting diagnosis.

the waiting for appointments is frustrating as hell.

3 - 6 months! grrrr… i bet you feel that you could explode!!

sorry julie 59 and julesgazz, i get easily confused and mixed you both up!

anyway suffice it to say that i wish you both well.

carole x

Thanks Carole.

Julie59, Hope your consultant visit went well. i’m in limbo land too with diagnosis, which is proving unpleasant, although I cant complain about time waiting etc., Neurology dept at this hospital are very good, quick and thorough. I was admitted with Transverse Myelitis on 28th May, spent 1 week in hospital having steriod treatments and, on taking my history, they then said wanted to look at possibility of MS and put me on 1200mg Gabapentin. After discharge on 3 June my symptoms increased and I’m unable to walk far and my balance is compromised so I now use a stick. I saw Neurologist again beginning of July and he said “test results pointing towards MS so getting colleague MS specialist involved”. My optic nerve test came back dysfunctional as did nerve conduction studies. Didnt pass balance tests. OBands came back as positive in serum only. MRI’s didnt show much, but a previous scan had in 2012 showed “evidence of some demyelation” (but this wasnt followed up at the time or specified) .

But I have lots varied symptoms, and many of them indicate MS, including bowel/bladder dsyfunction, altered sensations waist to feet, but these are also symptoms of Transverse Myelitis (same family as MS). Had these continually for 12 weeks now. Last few days have started with intense pins needles in arm and hand and face and also tremor. Only lasts short time tho, 20 mins etc. Im having repeat MRI’s with dye on 16th Aug then seeing MS specialist neuro 28th August. Im hoping that I will know one way or the other at that appt if have MS, but who knows, I know it can be difficult to diagnose.

I think some hospitals are better equipped than others. If you are waiting that long to see someone I would maybe consider looking online at other hospitals Your doctor should be open to referring you to a hospital of your choice under the Choose and Book system and you are entitled to a second opinion. Just a thought. Or put your name down for a cancellation. If you get new symptoms then ring the Consultant secretary and tell her what new symptoms are. I did this and got appt brought forward two weeks.

Hope all is ok today.

Jules