@Rose23 

Last reply

Rose23

Difficult diagnosis, am I mad!

Hi I’m so sorry if this is inappropriate but I’m just upset and don’t have anyone I feel will understand to talk to. I have just come off a telephone consultation with my (very nice) GP. I had an MRI as I have been having symptoms that my GP agreed sound like MS for ages - even years. I’m 36yrs old. Earlier this year my tremor and numbness got notably worse so it was affecting my work, I have been having memory issues, bouts of trouble swallowing where I choke, chest pain/heaviness, complete lack of sex drive (this lasted 9monthd) , loss of voice with no pain or trauma, Extreme fatigue after the slightest exercise even though I’ve always been very active and reasonably fit - (easily run 5k), Lightheaded/dizziness not related to BP, blood sugars or heat, and severe back pain that affects me so badly I am practically bed bound then two days later it’s as if I dreamt it as I’m perfectly fine. Anyway these are all things that come and go. She rang to say the MRI came back clear and has given me Propranolol for my tremor. She was reluctant to refer me to neuro but has done so at my request. I just feel like I’m going mad, I keep a symptom diary and as a nurse myself I’ve never thought of myself as a hypochondriac but this is what I’m starting to feel like. She has not offered any other explanation for the other symptoms so I just feel lost. I don’t even know really what I’m asking you I just don’t really know how to feel
@ColettePage

Hi @rose23. I’m newly diagnosed and no expert but when I saw my consultant he’d pretty much diagnosed me on my symptoms, history & the thorough examination he performed. He referred me for an mri but also got my consent for a lumbar puncture if the mri was inconclusive. I was fortunate that he considered my mri did confirm MS so have not needed a LP. He was confident enough to give me a diagnosis of primary progressive multiple sclerosis. Your symptoms sound very much like ms to me, hopefully you will get your neuro appointment soon, mine was just before lockdown but mri & confirmed diagnosis over the phone same day during lockdown. It’s a horrible time ‘cos it feels like my neuro Unit is closed, I understand they are slowly reopening. Try not to stress too much coz if it is ms that’s one thing you need to avoid. I’m waiting to see if I can start a trial drug but all that type of research/ trials have been put on hold. Take care, stay safe, Colette x

@Rose23

Thank you for your reply, it’s nice to hear other people’s experiences because it makes me feel a little less like I’m imagining the whole thing 🤦🏽‍♀️