Waiting for tests

[Sarah92]

Hi all Thankyou for accepting me here, I’m having some symptoms and am very anxious waiting for an appointment. It started with a headache and periods of stiff tongue feeling at the base of my tongue, then came twitches mainly left side but in random places. In the last 3 weeks I have noticed tongue atrophy, also atrophy in my calves and arms, pain in legs and arms, some swallowing discomfort, my speech isn’t really affected but definitely feels like I have thick speech. I saw a private neurologist via video call and he’s referred me for testing for possible mnd. I am besides myself I am 28 with 3 children aged 11,4 and 2. I can’t stop worrying and getting upset that my children may be without a mum, also worrying how long these tests will take because if it progresses quickly I won’t have much time 😢

[Mary C]

Hi, I remember having to wait for tests and it was an anxious time,
Until you have results you can’t confirm MND as could be something else.Is it worth finding out what tests you need and when.?.I ended up paying for some tests as covid slowed everything down.
The MND Association have a help line and whilst only a health professional can diagnose you the help line can be a listening ear.
Best wishes
Mary

[Sarah92]

Mary C thanks for replying, I know I can’t say it is MND but I’ve read a lot about it online and on forums and I’m scared. I’ve called the helpline and they are great with listening and reassurance. The neurologist said he wants mri of spine, EMG and blood tests, I am unsure of how long this will take

[Gordan1111]

Hello Sarah. I understand your worry. We all do. The only thing I would say is that there are many neurological conditions and most may prove to be other things. You can easily worry yourself sick - understandably. Have the tests you need to take and try to put the worry to one side. x

[Sarah92]

Gordan111 thanks for replying, I am worrier anyway so this just amplifies everything. I will try to stay calm and hope the tests don’t take too long. Do you have a rough idea on how long it would take?

[Gordan1111]

Hi Sarah. I had 3 MRIs and 2 EMGs. They try and check all other options before make diagnosis. The waiting was agony

[Sarah92]

Gordan1111 I can only imagine how much agony the waiting was for you. I’ve read some people who have rapidly progressing symptoms get a diagnosis before extensive testing as they don’t have the time to do them. What was your diagnosis if you don’t mind me asking

[Lynne K]

Hi Sarah. Sorry for your anxiety. It’s perfectly understandable but as Mary and Gordon stated we all have to wait for a diagnosis so can relate about that. I hope that your waiting time proves to be short until you get a definitive diagnosis whatever that turns out to be. Lynne x

[matthew55]

It was an ENT that confirmed it for me

[Gordan1111]

Hi Sarah. I have bulbar onset. So first thing to go was speech in my case. But
others are different - some are much slower. And let's be optimistic - you may not have mnd at all.

[PeterPan]

Hi Sarah, you’re very welcome here. You asked how long tests may take… the first thing to note is that there isn’t a single test for MND. It’s a case of ruling other things out. Everyone’s case is different, and it seems that everyone’s experience with tests etc is different.

In my case I had a first consultation with my GP (by video) early in August last year. I was referred as an ‘urgent’ case and saw an NHS consultant within four weeks. I then had an MRI scan, and nerve conduction and EMG tests all in one week about two weeks later. Then the consultant arranged to see me as an ‘overbooked’ patient at the end of his normal NHS list on 3rd October. The diagnosis was MND. I live near Watford in Hertfordshire and he then referred me to colleagues at the National Hospital for Neurology and Neurosurgery at Queen Square in London. My first appointment there was on 12th November.

I have no complaints about the speed of the process at all (considering the nightmare year that 2020 was for the NHS) and that good experience has continued all through this year too. The ongoing care from the team at the National Hospital is absolutely superb.

I’ve gone into quite a lot of detail, but I hope it sets your mind at rest a bit that things can move pretty quickly when they have to.

Very best wishes and I do hope things resolve in a good way for you. In the meantime (this is trite and very easy to say) try not to worry because it won’t help at all and will make you feel much worse. There are lots of things to consider, but you don’t have to do everything all at once.

[Mary C]

Hi Sarah
I was able to pay for some of the tests I needed which speeded things up to getting a diagnosis.I know not everyone can pay for tests but my daughter helped me financially.
Really hope you don’t have to wait to long
Best wishes
Mary

[Sarah92]

Thankyou all for your quick responses, all I can do is wait patiently, this honestly is the most stressful time so far for me especially with three children. I honestly want to be positive but when I find more evidence on my body it leads to a constant fear

[LindaB]

As others have said it can take time as tests undertaken to rule out other causes....July 2020 I was speaking to my GP about right foot limp and slurred speech when tired. MRI brain scan...then ENT before being referred to neurology. Once locked into that team in February not too long for initial diagnosis...2 months.

Its not knowing that's tough so I hope you hear soon and that it's a better outcome than you fear..take care 🙏

[Sarah92]

Hiya my speech is starting to change rapidly I now sound like I have a bad throat also a slight lisp, it is getting worse daily. What can I do my doctor says to wait for appointment, I feel so alone 😢