Hi I'm all in a whirlwind this week after being told that my diagnosis is veering towards Bulbar palsy. Feel quite alone and very scared right now
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Welcome. I was diagnosed with Bulbar onset MND in November. The time waiting for a diagnosis is awful and I still feel very scared and alone so know exactly how you feel. You will find lots of support here. I have only just joined the forum but everyone has been so welcoming and helpful. xBulbar onset diagnosed Nov 21. No speech, feeding tube, limbs getting weaker but still just about mobile. -
I am happy to be able to speak to people in the same situation. I am still learning to navigate around the forum so you may see me popping up here and there. Thank you for replying xxComment
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Welcome Hairbsb sorry to hear of your 'proposed' diagnosis. You'll find lots of people here who have gone through or going through similar times. A very friendly & supportive community. Look forward to getting to know you.
😉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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Welcome Hairbsb to our exclusive club. Here you can find friendship, support and advice in abundance. Very sorry to meet you but very glad your here. 😁👍🙏🤗xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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That made me laugh haha sorry to meet you! That appeals to my sense of humourComment
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Hello, I’m sorry to hear of your diagnosis, it’s a very frightening and lonely place to be. You will find a good support from experienced and knowledgeable people on this forum. Best wishes.Originally posted by Hairbsb View PostDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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Thank you. Still hoping for a different diagnosis after anti body tests but I suspect I'm hoping in vain. I knew from the eyes of one of the neurologists before they even told meComment
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Hello Hairbsb - I'm at a similar diagnostic stage to you I think, although mine is MND ALS variant (to be confirmed).
I'm already bombarded with referrals and appointments and trying to process it. Unfortunately my diagnosis has come a bit late so things feel very rushed. I ended up sulking in bed this afternoon 😆Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.
Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!Comment
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I am happy to say I am out of bed. I could sleep all dayComment
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Yes, I'm always so tired. I am learning to pace myself and do as little as possible. Can't work any more so that helps.Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.
Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!Comment
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Had to come home from work today as I just felt overwhelmed with it all. I told my boss as its quite apparent from the way I speak something's not right. Haven't told my children yet until I get a firm diagnosis but may tell them before that so they are aware. My husband is being strong for me right now. We currently are taking turns in crumblingComment
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Hi Hairbsb . I just wanted to say a warm welcome to the forum. There's lots of friendship and support on here.
The uncertainty of the days when you are waiting for a firm diagnosis is just awful and its not surprising you feel exhausted. I remember veering between hope , that it was something else and despair. In a very strange way it was almost a relief to know for sure so we could tell people and move on.
Sending you big hugs,
Love Debbie xComment
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Deb can you tell me if there is a way to go straight to new posts rather than going to my outlook as one day I won't be able to go that. Ps you are so rightComment
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