Hi,
I wonder whether anyone could give me advice on what to do to speed things up. I saw my GP in August for what was basically a month long period of feeling drunk, numbness in my hands and feet, very poor short term memory, stiffness in my legs, tremor in my hands and stumbling over my words. Some of the symptoms have since improved but I’d say I’m definitely not back to normal.
My GP did an urgent neurology referral 6 weeks ago, however when I rang today to enquire about the wait time I was told my referral had been downgraded to routine and it would be a 67 week wait for an initial appointment.
I have some savings which I could probably afford to pay for one private appointment, but what? An MRI scan? A consultation with a specialist? What would be the most useful thing to me at this point?
I have 3 very young children and I’m terrified of ending up unable to work, or drive, or look after my kids. I need to get things moving with at least an initial appointment, I just can’t afford to pay for the whole lot privately without wiping out all of my savings!
Thanks
I would calm down to be honest. Have you had covid vaccines or had covid as beleive it or not some of this could be down to that. You could have post viral syndrome, which seems to be, being talked about at the moment.
OK let us put this into perspective ok. I had way worse then any of that even went temporarily blind in one eye. Back then it was over eight months to see a neurologist etc i even PAID for MRI and ended up non the wise. 16 YEARS later i found out i had MS.
So ok try and calm down you have an appointment coming on a routine basis, some of what you are experieincing could be down to anxiety due to cost of living and just being plain tired with 3 children.
I personally would not spend your savings on this. iF THE SYMPTOMS have improved thats a good sign ok.
Can you get help with the chlldren, do you have a partner and family if so may I suggest they ask you to help so you can get a REST. big hugs. xxxx p.s. i have an URGENT referral to gastro man lol and its NEXT MARCH.
Back in 1999 I had neuro symptoms and there was a 10 month wait, so I went private for a first appointment (£200) and then was transferred to NHS under the same neuro.
No further payments were needed. So yeh, go for it.
Quite a few people are now going for an initial consultation with a neurologist privately, when the waits are very long to see one on the NHS. That can jump you one step forward in the route to diagnosis. Cost is somewhere between £200-300 I think. Make sure it is a neurologist who also works for the NHS as well, as if they feel that an MRI scan needs to be done, that can be back on the NHS. Waits for those are much shorter than for waits to see a neurologist, but have high costs. Neurologists are a strange bunch - some good ones, or unfortunately some very prejudiced or dismissive ones, as Crazy Chick experienced. If you get the latter type you may be no further forward and feel you’ve wasted your money.
The route to diagnosis can take a long time, many years, even where waiting lists are short.
If it does turn out to be MS, for most people it is most usually the relapsing remitting type, and only very slowly progressive, where there can be improvement almost back to normal between relapses. Many with MS continue working for many years, living a pretty normal life over those years. There are also effective therapies that slow down disease progression. So try to push from your mind the worries about being unable to work, drive etc. Hard to do when you have young children and very long waits on the NHS, though!
what a brilliant post.
i did as you know go private to start; the one good thing over it is I still have the same neuro who is passionate to find out what was wrong with me, as all my tests showed positive to MS but didnt fit the MacDonald criteria, and he told me when he finally diagnosed me, that he had learnt a lot from my case.
back in 2007 when i started the journey of PPMS I dont even think it was heard of. PPMS and RRMS are two DIFFERENT BEASTS. Yes they are MS, but not the same. I look at it like I had MS for many years and PPMS was similar to SPMS last stages. In USA SOME neurologist call it SPINAL MS.
My journey has been slow no doubt about it, BUT I still have the same issues i had back then all left sided, eyes, bladder, bowel, and ongoing mobility but still can function some what albeit it very slowly now.
I do think MS has over the years been portrayed as this hugely delibating disease and this is simply not the case. SO many people are working for years, we have mums and less disability as in bed bound.
I also think this is just my own personal view. When we are diagnosed with it, we have to LOOK AFTER IT, like any other disease. Its learning to pace, learn your own restrictions, never PUSH yourself. Too many younger people PUSH really hard and this is not good for them. I try to walk a little everyday, yes i am reclining more i know that but i am 71 so forgive myself. when i DID PUSH MYSELF, followed all these guidelines and bought a pace watch, i ended up in hospital last year very ill with my MS.
take care, stay safe.
we are all MS surviviors, but please be prepared for it NOT TO BE MS. x
Thank you, I’m really hoping if it is MS I will still get many good years of being able to work etc. My main priority is my kids as they are so young, we wouldn’t starve if I couldn’t work (I need to drive for my job) but it’s in the back of my mind that if I have MS and have another relapse there could be something permanent preventing me from driving. I always like to prepare for the worst so to speak!
Thankfully I work for the NHS and I know that although it shouldn’t be the case, if you are persistent enough and don’t take no for an answer you usually get listened to. I actually received an appointment for an MRI scan last week so just got a long wait for the results now. The neurologist I’ve been referred to also does a clinic at a private hospital so going to book in with him privately soon!
I haven’t had Covid that I’m aware of, and it’s definitely not anxiety or plain old tiredness from the kids. Im used to being tired but that wouldn’t suddenly cause the symptoms I experienced. I’ve looked at many similar conditions that cause the symptoms I had, but none of them explained every symptom, the only one that did was MS. They haven’t completely cleared up, I now also have a tremor in my hand and my memory is still very poor - I have always had a very fast memory previously. I have plenty of help with the kids, what I need is to know exactly what is wrong with me, I work for the NHS and know that you have to be very pushy when it comes to it! I’m just grateful that we are ok financially and I can afford a couple of private appointments
Thank you, I’ve decided to pay for a private consultation with a neurologist - I’ve actually managed to find out which consultant I’ve been referred to on the NHS and he does a private clinic too so going to book in with him. I did actually get an MRI on the NHS yesterday but they said there’s a 2-3 month wait just for the radiologist to review the scans and write a report! So I’ll have to wait a while for that but at least it’s saved me some money!