Time I Said Hello!

[Hope]

Hi Everyone.

I have been lurking around here for a few months now, it is time to come out of the shadows.

I started noticing the occasional slurred word early last year but it wasn’t until mid summer that I began having real difficulty speaking. After an MRI and EMG/NCS I was told the results showed suspicious for MND. I was diagnosed with bulbar onset in November.

I have banked my voice but not yet proceeded with downloading it but need to as speaking is becoming very difficult. I can eat ok, no problems with swallowing yet. I am fully mobile and have no fasciculations or cramps, just constant pins and needles in my feet and hands, which at times, extend to my knees and elbows. My neurologist told me some people do experience sensory problems, although I keep reading that pins and needles are not a symptom of mnd?

All the support kicked in quickly after diagnosis so that is a relief. I live alone and the future looks a scary place but I am trying to stay positive and not look too far ahead or even look back.

That is enough about me for now, thank you for reading.

x

[Lynne K]

Hope hi and well done for having the courage to put your head up out of the parapet. It’s very hard to take your diagnosis but this forum is great to help if you need any advice, tips or just a chat.

I’m glad that your support kicked in fast. Take care, Lynne x

[LindaB]

Hope welcome to the forum & sorry for your diagnosis. You'll know already there are a great many people on here with sound advice and support. Also a few light hearted moments.
Look forward to hearing more from you and about you😇👍🏻

[keno]

Hi and welcome

[GillB]

Hope

So sorry for your diagnosis . It sounds very similar to me, as my voice started slurring and I was eventually diagnosed in November. I am still fully mobile and also get pins and needles. I am glad the support services have kicked in. It is hard not to feel scared and look ahead but take it one day at a time . Easy to say and not so easy to do. You will get a lot of advice and support from the lovely people on here .

Sending hugs 🤗 x

[matthew55]

Hi Hope welcome to your family online. Sorry you're here but very happy to meet you. 👨👩👦🙏😁🤗xx

[Gordan1111]

Hello Hope (Good name). We all need some of that. Welcome XX

[Rosemary6NT]

Hope hello and welcome. I'm sorry for your diagnosis though. Lot's of good advice and experience on this forum.

[Mary C]

Hope Hi it is a dreadful shock to have MND but there is a lot of support.
Hope you find the forum offers advise and support.I agree you probably need to get your voice downloaded etc so you are prepared if voice weakens further.
There are many people on here with bulbar onset MND who may be able to offer advise or support.
best wishes
Mary

[Ellie]

A warm welcome to the forum Hope it's never easy to make that first post...

My neurologist told me some people do experience sensory problems, although I keep reading that pins and needles are not a symptom of mnd?

Did anyoneone try to find out what is causing your pins and needles? I had an impinged nerve in my wrist which caused me to have pins and needles, but wearing a brace for a while and being aware of where and how I placed my arm, hand and wrist certainly helped.

Love Ellie.

[Hope]

Thank you everyone for the warm welcome. xx

Ellie, the first neurologist I saw referred me for a spine MRI because she said pins and needles were not usually a symptom of MND. I have never received the results of that, or my emg/ncs although I have asked. The MND specialist neurologist told me some people experience sensory issues but did not suggest further investigation. I will raise the issue though as they are becoming more prominent. (Sorry, Ellie, I cannot seem to tag you.) xx

[Deb]

Hope. A very warm welcome to the forum and well done for making your first post. Its not easy to do because it makes everything seem real.

I'm so sorry for your diagnosis but im glad you've found us as the forum is great for friendship, support and advice. People really understand how the early days are so overwhelming and terrifying.

Take care and look after yourself,
Love Debbie x

[Ellie]

The MND specialist neurologist told me some people experience sensory issues but did not suggest further investigation.

Yes, there can be some generalised sensory system abnormalities alongside motor abnormalities, hopefully they diminish or can be treated 🤞🤞 You could do without pins & needles on top of everything else 🙄 xx

[shelly21]

Hi hope and good on you for posting. I'm also bulbar onset. I have had pins and needles in fingers for many years. I have nerve damage in my neck that causes pain. I also think it was the very start of mnd but nobody really knows.

Hope you can get help on the forum. I depend on it and get fab advice.