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 😢
Announcement
Collapse
No announcement yet.
Waiting for tests
Collapse
X
-
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
-
-
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
Comment
-
-
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 xALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.
Comment
-
-
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.
Last edited by Gordan1111; 21 July 2021, 20:15.
Comment
-
-
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.Diagnosed October 2020 - See my blog at https://www.myneurodiary.com
Comment
-
-
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 🙏Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.
Comment
-
Comment