First appt now in... Advice please

New diagnosis and before diagnosis
1

Hi all

Appt now in for first neuro appt end of September.

Don’t want to present an array of symptoms that ‘I’ think are possible MS related but not sure what to keep in or keep out, how far back to go etc in speaking to them. Obviously expectation is that this assessment will be based on what they ask too

Symptoms drove me to GP in June and looking back over historical symptoms which may now be attributable to possible MS. I have kept diary for a while re other health issues (hives, gastro issues, lightheadedness, back pain ) and have been doing so again since symptoms in June. I read that neuros less interested in specifics of symptoms, (though obviously need to know) and more around patterns so in looking at diary am not sure how i would outline it as realise i probably haven’t been really specific re timings, context etc , except when notable. Eg noting burning in arms shoulders at night in bed, or at other times just pins and needs in left leg, or right leg etc.

There is obviously something going on, and if not then there are 8 separate things going on! Went GP again this week for lightheadedness and 2 day headache and calcium low so he is now checking parathyroid , and given this causes tingling in extremeties, he was aksing lots re that. Tried to tell him its not only in extremeties and of course explains hee haw re nausea ane lightheadeness which is combination of feeling travel sick/motion sickness/coming off a fairground/hangover

Bladder issues - though not retention or overactive, did start around same time. May need looked at but GP keen for neuro to see first so she assumes its related probably

Lightheaded - comes with nausea, is pretty much daily for past 4 weeks. Its heinous and absolutely dragging me down. Was ok most of yesterday then post eating, it returned and hasnt left. Sometimes it goes, sometimes headache after, some times not. I have been to neuro before 2x, for few things, including lightheadedness , which at the time they thought it was due to body to being a new diabetic. This is a continued issue, since last May. For a while i have had significant increase in what i think is migraine but now wondering if it is.

Face pain - sounds like atypical TN. Again thought migraine but actually sure its ot

Altered sensations - both sides of body, buzzing foot, pins needles. Also twiching muscles and over last week, some jerking of muscles

Other - am pretty sure have had focal aware seizures, CT scan done at first symptoms, neuro said…likely migraine. Fairly sure its not so will mention it again as neuro actually an epilepsy specialst

The sensible bit of me knows that if it is MS, then it wont matter how mixed up symptoms are but at same time dont want to give detail in a way that they just put things down to migraine or T1D. Also though psychologically am delighted to think it might not be but also dont want told its not, if continue to get symptoms that are undiagnosed. Also now fearful its something else i have not thought about!!

I am quite a proportionate person so would always think of the most obvious. In the interim of appt have been reading and of course now fairly knowledgeable so dont want to act stupid but then also dont want to be expert when not diagnose

So, keen to hear how others managed first appt re symptoms array and discussion

Its weird to be feeling both glad and dreading appt.

Thanks

x

2

Hey - I went to my first appointment full of expectation after months of waiting and I wrote down all my symptoms and dates as well as I could recall. I think my long list (similar length to yours) was one of the reasons he brushed me off as almost certainly down to anxiety. In fact he actually said - you don’t have ms I can tell you now. My dad is very keen for me to let him know otherwise as/when I am diagnosed!

But at the end of the day it’s not overly important what they speculate, you just need them to order the right tests. So I would go into the appointment with that in mind and as long as you walk out with an MRI ordered (preferably brain and spine) then I’d call the appointment a success. I think it is unlikely with all you’ve had going on that they would deny you that.

Once you have MRI results on the table then the discussion will be a lot more meaningful one way or the other. I’d also emphasise the impact all of this is having on your day to day life and then fingers crossed they’ll refer you with some sort of urgency, although wouldn’t get your hopes up for that.

Still, great news you finally have an appointment booked in. Fingers crossed for you it’s with someone good

3

I had written down my symptoms and highlighted the ones which bothered me the most.

Charl84’s suggestion of saying how your symptoms impact on your day to day life is excellent.

my notes were of great help when putting in my claim for P.I.P.

4

Thanks both. Feel like am assessing myself when its their job but determined to at least get MRI.