what next? pre-diagnosis maneuvers

been lurking on here for a while…need some advice really! apologies for the novella…

last october I started to have a patch of hypersensitive skin on my upper left arm. this spread all the way down to the tips of my fingers along the top of the arm and then back up the underneath of the forearm and onto a small patch of my back. took until january to get to see a neurologist, had a bunch of scans and then in april I was told I “most likely” had MS, was given a course of steroids, and told I would have a follow-up MRI within 6-8 weeks.

so here’s where it all goes horribly wrong- steroids knocked back the worst of the hypersensitivity (I tell you, trying to work out what coins are in your pocket when you can feel every square inch of cotton as well is a pain in the bum) but it’s still there, just not so painful when I scratch etc. it also took until the end of august to get my follow-up MRI as I was accidentally “knocked off the list” and had to wait even longer. our local NHS trust’s MS nurse has left and not been replaced. the results of this MRI have only just deposited themselves with my GP. phoned the neurologist’s secretary last week and asked if I was going to actually GET a diagnosis this side of the rapture and was told I’d get a call-back which hasn’t materialised…

this is where I need help. I don’t know where on earth to start pushing in order to get another appointment and get either (a) a diagnosis or (b) more tests to confirm this. I’ve moved past the whole “oooh, I don’t want to know, avoid avoid avoid” stage and am now in the “actually quite annoyed and want to know what’s happening to me” stage. I need to make an appointment to see my GP and look at my most recent result, hopefully tomorrow or thursday, but…beyond that, I don’t know what to do. I had a great rapport with the MS nurse and am really upset that she’s gone. I’m resident here and have been for 8 years now but I still am not really conversant with how the NHS works, especially not for things like this. plus my dad is a rabid right-winger who is trying admirably not to use this as evidence of the evils of socialised medicine and that’s getting pretty tiring to hear when inside I’m going “you’re SO SO wrong but also you’re kinda right arrrgghhh”.

can any more “seasoned veterans” give me some advice? what buttons do I press to get someone to sort this/me out? I should have been pressing harder before now but the past year hasn’t exactly been awesome for me or my husband so have been pretty distracted. it’s only the last two months I’ve felt like I have the strength to really start tackling this.

(probably not helping that I’ve had a real butt of a cold the past two weeks and now my right hand is tingly on one side. I’m not sure if that’s because of the cold or something new and exciting and how long I should wait before I seek treatment for it- until after my cold goes? how long after? you get the idea. I’m 29 and thinking back have been having extremely mild symptoms- particularly a mild loss of bladder control/sudden urgency for a wee, mostly when poorly- for about 3-4 years.)

Hello and (belated!) welcome to the site

I think, if I were you, I would wait to see the GP before deciding on the next steps because what you do from there will depend on the MRI results and on the neuro’s conclusions from them.

But “actually quite annoyed and want to know what’s happening to me” is just about the perfect attitude: assertive and focused!

In the absence of an MS nurse, your GP will have to fill in, which he/she may be very uncomfortable with and want the neuro’s approval to even pick up the prescription pad never mind actually write something in it, so try and stay friendly with the neuro’s secretary - you might need her/him!

Re the current tingling: I’d hold fire until the cold is out of your system if I were you. There’s nothing that can be done apart from steroids anyway, and they should really be reserved for major relapses. If you are struggling to cope with it, you could always ask for a neuropathic painkiller instead.

Make sure the GP tells you everything at the appointment and get copies of the report / letters if necessary. The more you know, the easier it will be to know what to do next.

Karen x

PS From me to your dad: it ain’t perfect, but it’s free! which is pretty bloody amazing really :slight_smile:

hi karen!

problem re: dad is, I think, mostly that my stepmom also has MS, and when she finally saw a neurologist they had her diagnosed within a week, almost entirely within a day. so he’s severely unimpressed! which I am too really, but his unimpressedness has a decidedly aggressive tone to it :frowning:

thanks for the advice about GP and waiting for the cold to end- it’s not bothersome or painful, just unsettling. my hobby- sorry, life quest- is to KNIT ALL THE THINGS and while I’ve not lost any mobility in either hand that’s pretty much my biggest fear. so anything happening to my hands makes me squirrelly. but I can wait and see. just realised this morning that we’re too short-staffed today to be able to pop out to the doctor’s so will try and get an appointment tomorrow or friday. one benefit of working part time!

quick update: went to see my GP thursday morning and had a minor breakdown in his office because he’s just so nice and he said he would try to sort things for me; the next day I had a phone call from neurology promising they would have me in for a lumbar puncture within the next month, though it might be at short notice (my response was “who cares! just make a space for me!!!”)

lesson: perservere. and enlist some professional help. his phone call clearly carried more weight than mine!

I’m so pleased that your GP has managed to get things sorted out for you - he sounds like one of the good ones! I hope it happens sooner rather than later for you, so you don’t have the nervous waiting around for quite so long.

had a letter through today for the 15th, not the lumbar puncture but for a “differential” test- ? don’t have the letter in front of me, but will take 3 hours and involves electrodes and eye tests. good thing I find these things interesting, on the other hand they might sedate me to shut me up from asking questions. also the tingle in my right hand is now gone so that’s cheering.

thanks dagny, I think I’m getting closer now, and I’m definitely not seeing any other GPs anymore but him!!