pre-diagnosis advice

New diagnosis and before diagnosis
1

Hi,

Just after some advice…

I was diagnosed with ME 10 years ago, due to symptoms of chronic fatigue, pain, muscle twitches etc etc. Over the past 10 years my overall fatigue has improved so I can work 30 hours a week, but the odd thing is that the pain has not improved, but gradually increased so I wondered about Fibro.

A year ago I started to experience balance problems, which went on for a few months but then stopped.

Over the past 3 months, the balance problems returned with a vengeance and this time accompanied with a near-permanent headache.

My GP tried me with meds that, if they helped, would show it was an inner ear problem, but the meds failed badly, making me worse.

They are now stumped and have agreed to write to Neurology for advice.

Looking at all the symptoms I experience, I am wondering if all the symptoms I have been putting down to the ME is actually MS. At this stage I just want to know what’s going on… I’m keeping fingers crossed that the Neuro team recommend an MRI but if they don’t can I insist the GP sends me anyway??

Thanks in advance :slight_smile:

2

Hi

Do you mind if I ask what the meds were, that made you feel worse? It wasn’t by any chance Serc / Betahistine?

I only ask because I was prescribed Serc / betahistine for severe dizzyness. I understand it’s the go-to med for menieres and certain other inner ear disorders - but all it did was make my dizzyness worse and also gave me stomach cramps.

xx

3

They were going to try Prochlorperazine but as this interacts with the Amitriptyline I take for pain, they gave me Cyclizine. It not only didn’t help my balance problems (no dizziness, it’s like I’m drunk or on a boat that is in rough seas), it left me feeling weak, shaky and faint.

As it didn’t help, they have discounted inner ear issues and written to Neuro.

H

4

I hope you get some answers soon, and start to feel a little better X

5

Thanks, me too!!