support/advice on struggling to swallow/breathe

New diagnosis and before diagnosis
1

Hello to anyone who reads this

My Name is Hannah and I have numerous symptoms which for years now I have been concern, that could be Ms which I had to battle my GP to refer me to a neurologist over. I haven’t got an diagnosis as of yet but I have seen an neurologist who said I have optical nerve damage in my right eye and a swelling on my brain?

I’m dew to have a MRI in 2 weeks and waiting for my appointment for a lumbar puncture to come through.

For the last 3 weeks now I’ve been in a lot of pain, and my throat and tongue just haven’t had a rest from numbness/tingling and spasms. which has resulted me in hardly eating and at its worse even being un able to drink. I have a lump that swells up the right side of my jaw under my tongue and a lump that swells on my right side at the back on my neck. I don’t know much about MS (or what it could be) but these seems like points that get attack just before and during a really bad flare up. and surrounding area’s end up getting very inflamed, sore and painful. (happens in other parts of my body too but not always at the same time) at the moment as I type i have it around my right jaw&cheek. back of my head. down parts of my neck and back and shoulders and right collar bone. I also feel like it’s happening deep in my chest. this also is causing me breathing difficulties and I do struggle talking.

My doctor who’s dealing with me is off until Thursday, my mum and aunty dragged me down to the urgent care unit the other day which ended up a waste of time. trying to keep calm and keep anxiety at bay but really struggling with my mental health and I’m at a wits end.

I would be ever so grateful for any support or advice. or just someone to talk to and chat about experiences and coping strategies. I feel so alone. even though I have a wonderful mum who cares. Just someone who might understand what i’m going through would be a god send right now.

thank you for your time.

2

hi kismet kitten

i have heard of people with ms being referred to speech therapist because they can help with swallowing.

ask your gp to refer you.

good luck

carole x

3

I also think a referral to speech and swallowing therapist would help.

You need to tell them it`s urgent.

I do hope you get ome relief soon, as it sounds awful for you.

luv Pollx

1 Like
4

Thank you Carole and Pollx

I probably need to be more pushy and demanding than I am but it’s not really in my nature. its took me 3 years to get anywhere with my gp and that’s only because i threw a tantrum dew to pure frustration back in April .

working on changing my diet too (once i can eat again) as I read that can really help

5

have you asked for a referral yet?

pollx

6

Sorry I thought I had replied to you Pollx.

I have a appointment this Friday with my doctor, I will ask then. I tried to see if i could get in early but my doctor isn’t back until Thursday and all the others are fully booked up until next week. Trying to get thought to my doctors is pretty frustrating at the best of times.

I’ll let you know how it goes x thank you for asking it means a lot

7

How did it go?

pollx

8

She agreed and has referred me to speech therapy. :slight_smile: thank you again Pollx and Carole xx