So my Dr put an urgent referral through to neurology but the hospital triaged it and changed it to routine, therefore it will be 27 weeks just waiting for the consultation. My husband decided we should try and go private for at least the consultation because the consultant has both a private and NHS clinic (sometimes for the scan they’ll put you through the the NHS clinic).
The last straw came last night (problems when I saw go were numb face, numb tongue, pain/numbness/tingling in legs), exhaustion, brain fog, stabbing pains in head to list just a few) but now my legs and left arm are weak and I’m having balance issues. I’m struggling so badly but have 3 children 5 and under and it’s almost dangerous.
im not the person to make a fuss but is it worth going to A & E at some point? Have any of you been to A & E because of your health/struggles with MS/suspected MS?
I don’t know what to do :’(
Hi, are you alone with the children? Can anyone look after then for you for you to rest? I would call 111 and ask their advice. The last thing you need is a trip to a and e with small ones. I’d call 111 - I’ve done that before when my kids were ill and they were great. They would tell you to go to the hospital if they were concerned. Are you feeling any better?
I went to a&e they done loads of routine tests but told me to wait for neurologist appointment went to a&e on 2nd Jan and appointment for neurologist was February!! I ended up getting my gp to do another referral medical assessment unit where I got all tests my gp got appointment brought forward to 30 Jan 17 when I got diagnosed.
I would pay for a private consultation. This may lead to an mri request. You can do this and further appointments on the NHS, although if you can possible budget for it, I would also pay for the mri to be done private. Much faster, less waiting around when you’re looking for answers and re assurance.
I woke up with total right side paralysis on a Saturday morning. Unable to sit up or get out of bed. Ambulance, A&E, admitted, all sorts of tests/scans, Monday morning I was told I had ms!
With small children, I wouldn’t hang around. You need a diagnosis and if it is ms, you need to start some treatment. Good luck.
Thank you for for your replies! It’s crazy how two people have had two very different experiences. I haven’t got an appt with the NHS yet because it’s 27 weeks away and I’m wondering what to do.
Im not as bad as you Poppy but definitely in a bad way. I’ve cried so much in frustration and feeling sorry for myself. It must have been so scary to wake up and not be able to move I hope you weren’t alone. What a quick diagnosis though. That you must be grateful for as you know it otherwise takes people months and months.
So do you think it’s worth going? I’m not able to go now because of the children but husband is coming home as soon as he can.
Thank you again.
Thank you! No I’m not and the numbness in my lips is getting worse and now my right arm is becoming more weak. If it wasn’t for the children, being a woman I’d suffer in bed but with 3 kids it’s not do able. I feel like my legs are going to buckle. I’ll def take your advice though, although I did call the gp and they said to go to a&e. You know as I do, they look at you like a hypochondriac and I’m anxious of going. Isn’t it silly, to feel so awful and be fearful of being judged.
thanks again, hope you’re as well as can be. Tanya
That wait must have felt a lifetime
Your husband’s idea is much better one if you or your family can get the consultation fee together. Why sit in A&E for hours before being sent home on the hard-to-argue-with grounds of being neither an accident nor an emergency? Not a great way to spend a day.
Hi, I would also suggest you go the private route for an initial consultation.
That`s what I did originally, as my GP said there was a 10 month waiting list…this was in 1998.
I paid £175 and saw a neuro, who gave me an hour`s appointment time.
Then I saw him again on the NHS.
Hi Tansar, my story is exactly the same as Poppys, collapsed in a supermarket, although had been having bizzare symptoms for a while, was taken to A&E, August bank holiday, will be etched in my brain til I die, admitted, tests, MRI, lumber puncture, diagnosed in 3 days. I wasn’t taken by ambulance though, being a stubborn so & so, staff called my sister. She phoned A&E to say we were on our way, not sure if it would help getting hubby to do this first? My sister explained what had happened & symptoms I was having, Triage nurse put me straight in even though I was protesting & to be fair apart from the weakness on left side I was telling them I was fine. Try this first & see what A&E say, as your already in the system for a neurologist, they will know something about what’s going on, let us know how you are doing Tracey x
Sorry you’re going through a hard time. When my GP decided I should see a neurologist she asked if there was any chance I could go private. I wouldn’t normally consider it but my mum had already said she’d pay if I needed it. It was ten years ago and it cost £200. When I rang to make an appointment they apologised that they couldn’t fit me in the next day but could the day after, being NHS through and through I was stunned! I saw the neurologist who spent half an hour asking questions and doing a physical examination. At the end he said that I definitely had an upper motor neurone condition and the exact one would be determined by an MRI. I was worried that I couldn’t afford an MRI privately but he just moved me onto his NHS list and two weeks later I was diagnosed with MS. The stress of not knowing will not help your symptoms so I’d say, if you can afford it, go private for the initial consultation. I was treated really well by the neurologist whether I saw him privately or on the NHS.
I hope you get some answers soon, I had young kids when I was diagnosed and they have grown up with me having MS. I actually believe it has made them more sensitive and caring!
Thank you for your reply Becky! The NHS is stretched to the limit so it seems, you can appreciate how hard it is to be told to wait such a long time for an appt, and even then it’s only a consultation. I’ve got a private appt on Monday so fingers crossed he’ll give me and MRI on the NHS. I had a scans on my pituitary gland which and back fine but the consultant said that something came up on the scan which needs to be re done by a neurologist so we’ll see where this goes. I’m pretty certain it’s MS. I’ve had horrendous pain today which has stopped me in my tracks.
How are you after your diagnosis? Are you managing it well?
all the best to you and thanks for your reply! Tanya x
I didn’t make much sense, the pituitary came back with no problems but the found a white area which needs to be checked as the scan they used was just a T2.