I feel like I’m getting nowhere. Exhaustion is horrific, balance and dizziness episodes every single day and now I’m getting drop foot. I need to make an appointment with my consultant but honestly don’t see the point. He seems to take no notice and all he seems to say is thats just a symptom not a flare up and he won’t even consider medication until I have had more than 2 flare ups in a year. At last my appointment he actually stopped me talking to answer a call from his dentist. Just feel fed up and disregarded
No wonder you’re feeling disheartened. I’m afraid there’s nothing for it but to keep steadily
and persistently pressing your case. I am sorry that it is such an uphill struggle. As if we don’t have enough to put up with!
Find out if there is an MS Centre near you that offers Oxygen Therapy - My Neurologist suggested it for me several years ago and it makes a huge difference to the level of fatigue that I get; I still have a monster of a fatigue session once in a while, but nowhere near as frequently bad as it used to be.
Make sure your levels of B12 and Vitamin D are good - your GP should be able to run simple blood tests to check this. Supplemental D3 is always a good idea with neurological conditions as we appear to get through it faster than non-PwMS.
Also, ask for a referral to your nearest Ear Nose & Throat specialists to check there is nothing physically going on with your vestibular systems (your middle and inner ear that affect balance). The tests they do are very simple and are important to prove a neurological rather than physical cause - it helps build up your case/argument for getting treatment.
I think a note to your local PALS would be in order - taking a ‘personal’ call during your appointment is not on - I have had my Neurologist take a call from another Neuro to clarify something, for which she apologised profusely, but certainly no personal calls. Are you able to switch Neurologists?
That’s really rubbish you’re having a tough time. It can be a balancing act because until there is a 2nd obvious relapse they can’t definitely diagnose MS. Although if they’re going on 2 relapses in a year that is very active MS so I’d be asking to speak to someone else.
Keep trying it can be a really tough process (as someone who had their first appointment rescheduled 4 times) but stick with it and I’m hopeful you will get there.
I was diagnosed with MS this past April. I had an MRI that showed a lesion that enhanced. My balance got worse and I started falling bruising myself up. My fatigue and energy was horrendous.
After 3 MRI’s and a spinal tap. Found I had 12 O bands.
I saw my neurologist again 2 days ago and was told my dizziness wasn’t an MS symptom and she wasn’t planning on putting me on a DMT.
Needless to say, I have an appointment with 33 years of experience including MS experience
I suffer terrible with dizziness and loss of balance, and ended up being referred to a MS vestibular clinic. The physiotherapist there gave me exercises to do, that while they didn’t get rid of my dizziness completely they do help. The physiotherapist also referred me to ENT to check it there wasnt anything else causing the dizziness. Then she gave me a foot brace that has helped with my tripping up. Long waiting list for ENT but feel like something is getting done xx