Nobody to talk to

Snap, I went private for a neurology appointment and had a head MRI. I won’t list all my symptoms but very similar to yourself.
My head MRI came back ‘clear’ and when I had my follow up appointment the private neurologist seemed quite dismissive.

He said he can’t see what else he can do for me! I told him, I just want to know why I feel so ill and asked why he didn’t order a full spinal scan to which he replied that as I was self paying he felt it would add the cost up and unlikely to find anything.
Anyway I’ve got the scans posted to me on disk !

Very frustrating trying to explain and left me feeling like it’s all in my mind, but the tremors I can’t hide !

So, luckily I still have my NHS refferal which is in July for the scan and August for the follow up with a different neurologist. My GP also has added a full spinal scan, when I spoke to her, she said if I get any worse to go straight to A and E!

After being quite laid up again the last few days, it seems to have eased today ( I mean, I still have foot cramping, fizzy feet and hands and tremor but no dizziness and not so much fatigue) but I have been resting most of the day and I’m already in bed at 7pm but that’s been the new normal for me since this all started weeks ago.

So, I feel for you, I’m in the same boat !

1 Like

Isn’t it awful that we know a few months ago we wasn’t feeling like this but still have no answers. I didn’t get out of bed for the first couple of weeks but then made an effort to get dressed and just sit in the garden for a while, even if I did have to go back to bed for my afternoon nap :sleeping:.
After around 5-6 weeks the shakes and headaches subsided but the pain I had was unbearable so that’s when I was prescribed the meds and they have been amazing, until I went back to work. Just don’t know how I would manage if they finished me up?

Hope we can both get some answers soon, take care and Spk soon. I’ll keep you updated x

I think the worst thing about it all is, until you know what is wrong with you, how can you begin to understand how to deal with it and as most of it is invisible, a non diagnosis then seems to equal mental health issues.
Like you, I don’t feel that my life is any more stressful than ever before, in fact i can tell you that the last 6 months have probably been the least stressful of the past ten years ! It’s this limbo situation that is stressful if anything.
Please do keep in touch ! X

1 Like

So just had my consultation with the neurologist and he was sooo nice. He’s sending me for an upper spine MRI as I have only ever had a lumber MRI. He said could be inflammation on the spine due to all the symptoms but won’t confirm until had the MRI so still in limbo land :woman_shrugging:t2:

Hey, weather you have MS or not just keep talking, we are here and you are not alone!

1 Like

I come on here most days for a read and to update my experience and even if I don’t have MS I am so much more educated about this disease, it’s so strange that when you mention MS to people the different reactions you get, it’s only when you explain it properly to them (well as much as I can) that they realise what MS sufferers actually go thro.

Hats off to all of you, if nothing else I have learnt so much and if I do end up being diagnosed I’ll know I’m in very good company :hugs: xx