neuro appointment next week

New diagnosis and before diagnosis
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Hi, i have an appointment with my neuro next week and i want to get the most out of it with sounding like a hyperchondriac.( sorry about spellings and punctuation)i take 300mg pregabalin each day, i know i can increase this but i really struggle with concentration and speach.i get very nervous about talking to people , i lose words etc.i have problems with my bladder but theyre not consistent, sometimes its urgency and despite not being desparate by the time i get to the loo i wet myself before i can get my trousers off. other times i go to the loo and it just trickles, then when i finish , by the time i’ve washed my hands i need to go again.my dr suggested pelvic floor exercises.done them since having kids, paranoid about wetting myself.i feel like i walk on a slope.my heel hurts.dr suggested pain killers and walking stick, and walk straight.walking has reduced from 15+ miles (no car) love being out doors, hate house work.i now walk to work, (just over a mile) and back and some times i just struggle to get around the house.my calf is stiff, my legs and feet throb.hands are stiff and burnt. feel like ive hit my funny bones, sometimes sharp pains in arms that go across my shoulders and feel like a stabb in my chest.initially i had pins and needles in hands and feet, ms hug, tingly body legs and arms.mri last year showed a couple of lesions, and an area of activity in neck area,o bands in spinal fluid.told probable ms. ms hug went after 10 weeks, but this year has felt like a down hill slope.overall i’m happy but sometimes if im shown sympathy i cry because it reminds me of how much ive lost and could still lose, i worry about the future. last dr i saw said that she feels it is not rrms, so dmds won’t help so what did i want from her.asked for referral to neuro, my drs make me despair cos i feel that anything that i go with is put down to could be ms but no physio is offered, no coping stategies and i feel alone.how can i get this across without sounding depressed(i enjoy my time with my daughter and my mike- they turn on taps, open bottles, help me across the road, and make me laugh at life)

any dvice on what to expect, will i get a dx?what if it isn’t rrms, what if its progressive?

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dvice should read advice!!!

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First thing I would recommend is to stop worrying about what type of MS it might be. The most important thing about a diagnosis is access to things like meds for symptoms, neurophysio, an MS nurse, etc. If you are RRMS and eligible for DMDs, then great, but it’s not the end of the world if you aren’t. (Did you know that a lot of RRMSers turn down DMDs?!) Plus, of course, a diagnosis gives us closure on what the hell is wrong with us, automatic cover by The Equality Act and other things (that your GP clearly has no clue about!).

Second thing I would recommend is to get yourself a new GP. Seriously. It is out of order to be receiving no help never mind the assumption that an MS diagnosis is only important to get DMDs - utter CR*P! And a GP to recommend a walking stick without any expert input is just plain lazy, especially as walking sticks used incorrectly probably cause more harm than good! You need to see a neurophysio. You also need to see a neuro - a GP has no right to withhold this from you when it is absolutely clear that you need specialist care.

Can you tell I’m annoyed with your GP, lol?!

It is a sad fact of modern life that it is the patients who ask (sometimes loudly!) who get. But first step, get yourself a GP who might actually listen!

Karen x