My name is Angela, was diagnosed on the 6.10.2021, I have had no visits or phone calls from anyone as yet, quite worried, to think I might not get any help from mnd nurses. Think you need someone to talk to sometimes.
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Welcome to a very good place for help Ange.I’m sorry that you haven’t had any services contact you yet. If you ring MND Connect they are good for listening and for advice xLast edited by Lynne K; 2 November 2021, 16:07.ALS 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. -
Ange A warm welcome to the forum Angela.
How awful for you that you were given such a dreadful diagnosis 4 weeks ago and since then, nothing but radio silence... This is when you really need support .
Did your Neurologist give you an indication of what happens next? And your GP, presumably a letter was sent to them or is your GP out of the loop too?
Ringing the MND Connect helpline is a good idea too.
Anyhow, I'm glad you found us Angela, we will support you any way we can.
Love Ellie.Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Hi Angela, so sorry that you’ve had to join us, but you’ll definitely find people to talk to on this forum. Welcome! MND is different for everyone, but there’ll always be someone here who can listen and help with practicalities.
Take one step at a time, but you do need to find out how you are going to be supported fairly soon. The way support is provided seems to be different entirely by geography - it really is different everywhere. Your GP or neurology consultant would be good people to ask. If the consultant seems inaccessible, see if you can reach him/her via an email to their secretary.
In time you may need support from an OT person, a physiotherapist, speech and language therapist, dietician, community nurse, MND specialist nurse, also possibly a local hospice and palliative care team etc. I’m very lucky in Hertfordshire - I do have contact with all those parties (and the National Hospital team in Queen Square who are brilliant), and the best thing about it is that they talk to each other in a pretty coordinated way. Hope it’s like that for you too in due course.
Best wishesDiagnosed October 2020 - See my blog at https://www.myneurodiary.comComment
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Ange the first few weeks were the most difficult for me as I did feel a bit 'abandoned' it took 4 weeks for the neurology department to type their report and send to GP and make onward referrals. Fortunately then the community Neuro rehab team picked up my case and then several visits from SALT, Physio, OT.
It does feel as though nothing is happening and then suddenly you'll find yourself bombarded with visits.
In the meantime you should have local counselling services available if you want to talk through how you are ....your GP should be able to advise on this and GP should also be available for you to talk to...even virtually.
As others have said M ND Connect is also a brilliant contact for advice and support.
Glad you found the forum....there's always someone on here and we're a friendly bunch 🤗😘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
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Think it will come Angela. I had quite a long interval from diagnosis to things being put into place. You should get visit from Salt team and appoint for mnd clinic but it wouldn't any harm to remind them you're still waiting. Welcome to the liquorice all- sorts anyway. xxComment
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Thank you lindab, my Drs are not very good, I have to follow things up myself, but don't know how long I will be able to to thatComment
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Once other teams kick in I hope your GP situation improves. My hospice nurse meets regularly with GP at the practice. Good luck and keep posting👍🏻Originally posted by Ange View PostInitial 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
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What is Salt, that everyone as mentioned ???Comment
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Speech and Language Therapy....help and advice regarding swallowing and talking.👍🏻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
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Speech and Language Therapist.Originally posted by Ange View PostDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Speech and language therapy. Should keep eye on swallowing and arrange voice-banking xComment
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I started with a limp and then footdrop and falling asl couldnt balance, i saw one neurologist he left got appointed another, he left never saw him, then got referred to another which they ruled out mnd, but I wanted to told what I had, so got referred to another hospital where all tests where done again, 2 and half years later got told I had mnd. Everything as been so stressful, Drs no help at all.Comment
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Hey Angela and welcome from me. I know how shocking it is when you find out so please ask anything you want. We are here to support you 🤗🙂😊☺️xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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Hello Ange, get ready is all I can say..........at the begining very quiet the wheels turn slow..............BUT, then you will be totally overwhelmed by people contacting you - I didn't know who on earth was coming next at one point, it just doesnt seem to gel at the start
SueHusband Albert diagnosed PMA Feb 21Comment
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