I’m new here but in desperate need of some advice.
A quick overview. I had a scary onset in 2018, MRI showed brain and stem lesions. Lost use of left arm/side - it came back but never fully recovered. Since then had vision trouble, speech issues, swallowing issues, wonky legs, balance, fatigue etc etc!
I’m currently classified as CIS. I’m awaiting an MRI in March to check the progression. I know looking back over the years that I’ve probably been relapsing and remitting for years albeit with much milder symptoms.
Coming to terms with all of this has been and is very tough. I’m awaiting CBT to help give me a more positive outlook.
The problem now is that after racing up four flights of stairs last Wednesday (which was admittedly a ridiculous thing to do) I can’t get air down into my lungs even though my oxygen is at 100%. I’ve been to countless out of hours doctors, A&E, over the past few days and because I’m obviously anxious about this symptom they are putting it down to a panic attack…which I can safely say it definitely is not. I’m panicking because I feel like I can’t get air into my lungs - not the other way around. I’m so frustrated and frankly terrified that I’m suffering so badly and it’s been wrote off as mental health - I was told to go home and do some colouring in to relax! I’ve spoken to the MS nurse today and she has said the same - anxiety! I feel like I’m banging my head against a brick wall and nobody is listening to me. The only person fighting my case is my husband because he’s knows me better than anybody. I’m now paying to see a private neuro tomorrow to try and get somebody to listen.
Can anyone tell me if yourselves or anybody that you know, have had a feeling of breathlessness/can’t fill lungs and it was neurological? Chest X Ray was clear, bloods normal at A&E - hence they think I’m imagining if all.
I’m so distressed and feel so alone that nobody will listen to me. I’m exhausted…and breathless.
Thanks so much in advance for any help or advice.