MS Related - neuro waiting list

[yorkshirepudgf]

Just looking for some advice please.

Last year I went completely numb in the right hand side of my body with altered sensation. I went to A&e and a few days later following 2 MRI scans was diagnosed with a rare condition called Transverse Myelitis (lesions in c2 / c3 area) and under went IV steroid treatment. Thankfully I regained sensation but still have ongoing issues.

I also had a lumbar puncture and there was an o band present in spinal fluid. Due to this my neurologist estimated that there is a 30% chance that I will go on to develop MS.

I should’ve seen my neurologist back in March. I call monthly to see what’s going on and just advised that he has a back log. I’ve tried to arrange a private appointment but he has a backlog there too!

I’ve recently started to feel extremely fatigued and I need 10 hours sleep most nights. Even then I really struggle as the day goes on. I work full time in a very busy and pressurised role and don’t feel on my A game at all. In addition over the last few weeks I’ve had 2 migraines plus headaches most days. I’ve also noticed muscle twitching in my chest area on one side.

For anyone with MS do you recognise the symptoms above as MS? Does anyone have any advice re appointments? I’d like to stick to the same neurologist but it’s just dragging on so long and I’m worried about my performance at work.

Thanks

You could contact your neurologists secretary -just phone the main hospital switchboard and ask to be put through to their secretary if you don’t have a letter with the number on- tell them you are having concerning new symptoms and that your appointment in March was cancelled and ask if it’s possible to be seen ASAP.
I hope you can speak to the neurologist soon.

Maybe you need to see someone else. Can you ask to be seen out of area. I ‘jumped’ the queue to see another type of consultant by traveling a long way away.

I’m now seeing a neurologist with Bupa and having to wait two months. It’s a long time.
Hope you get seen soon and hope you feel better soon.

I was diagnosed with transverse myelitis as well. For me it was both sides and I was numb /some pins and needles from waist down. Also had lesions on spine, seen on MRI. It got better after about six weeks, no steroids. Because I'd had a previous bout of optic neuritis, I was formally diagnosed with MS, which of course threw me into a panic. I did loads of research and found a fantastically helpful charity, overcoming multiple sclerosis. I did all the things they recommended (vit D, fish oils, cut out meat and dairy, more exercise) and immediately felt better. Had one relapse five months later and since then, no other problems. I'm still on the diet, which I love, and have been interested to see that the rest of the world seems to be catching on to this for general health reasons.

That was ten years ago.

I can't remember the last time I saw a neurologist but it's many, many years. The thing is, I'm not sure what good it would do. I don't want to take drugs and I'm not sure it would help to have frequent scans. I can understand you wanting to though, because you want answers and certainty.
Good luck OP and try not to worry too much if it does turn out to be MS

Hi there,

I developed transverse myelitis this year, with a t4-5 lesion.

I had a lumbar puncture which was positive for oligoclonal bands.

I had a couple of brain MRIs with contrast alongside my spinal ones, and I have some brain lesions too leading to an ms diagnosis in September this year.

My ms symptoms were fatigue, some weakness to my right hand which hasn't yet resolved and awful vertigo. I also have some foot drop too. My memory is terrible now, I rely on lists for everything!

Have you had an mri brain? If not I think it's something you should discuss with your neuro consultant.