The big MS monster

Hello there, another newbie! Finally gave in to the need to speak to people who understand how I’m feeling, as with the best will in the world nobody seems to really understand how I feel. I had a first attack last year, left sided weakness, pain, numb skin and fatigue. Had a pretty tough time so far with the nhs, was first of all basically told to go away and stop being anxious, then kept in hospital for a week waiting for a scan, then was just told I had ‘abnormalities’ on my spinal MRI but nothing more, not having a clue what that meant obviously. When the LP results came back positive I was told to ‘just get on with it’ I’ve also had anti psychotics accidentally put on my medicine records and was asked what do you think is wrong with you? Anyway, that was a little prelude to explain why I’m pretty distrustful about the nhs now! So 4 weeks ago pain started back in left leg, worse than before, fatigue has been dreadful, headaches, then new symptoms of tremor in my hands and spasms, both in hands and occasionally legs. Went to see GP, referred to neurologist and have now been waiting 3 weeks and no appointment date thus far. I’m off work just now as I’m so tired and stressed that I can’t face my job (I work with suicidal people) To stop rambling, does anyone know how long you wait for an appointment, and what happens when you get one after a possible second attack? I’m frightened that if I have to wait too long and need meds,the lesions will be getting worse, is this true? I’m not very well informed as you can probably tell! This limbo land is horrible and the ms monster seems less scary than how I’m feeling just now! I’m getting to the point that I’m so fed up with how I’ve been treated from the start (above was not an exhaustive list, just some great highlights!) that I don’t trust them, and considering a private consultation with a neurologist? What are people’s opinion on this? I’m open to any and all suggestions, if someone told me eating a raw bulls testicle would help I’d probably give it a shot!!! Sorry for the long post, it’s so good to have a rant and have people to talk to who will know how I feel. Sarah :slight_smile:

Hi Sorry to hear you have had such a rubbish time, that all sounds awful no wonder you are fed up. Just to say I’m not sure what happens after a second attack but would definitely go back to my GP. I paid privately for my first appointment as the waiting time here is months, and then transferred back to the NHS with the same consultant, and that was definitely a positive experience. My gp had specifically recommended the neurologist as being a nice man as well as good technically. The gp secretary should be able to find out how long the wait is likely to be to see the neurologist, but in the meantime I would be straight to the gp. Good luck xx

Hi Sarah that is rubbish poor you. Defo back to the gp - just phone and talk to him/her - in my case it took four weeks for the choose and book letter to be processed - not clear why cos my gp is lovely but there you go. Keep chasing cos even when you get the chance to book will probably be 12 weeks or so … Sorry I know that sounds ages - you have to get used to being patient… All the best in the meantime, and keep coming back here - everyone is lovely C x

I am waiting for a neuro appointment and have just been informed that the appointment will be routine and may take as much as 13 weeks.

My life is nothing like routine at the moment.

I am looking into costs of private consultation and i hope to hear back from the hospital today aboout this.


Hello guys thanks for all your replies! People on here do seem to be so lovely :slight_smile: Felt really down today so haven’t done anything, feel like I’ve given up today but tomorrow will be better! I’m going to find out about nhs appointment and if not private appointment tomorrow, I saw on Yvette’s other post that a private appointment could be really quick which is tempting. I feel bad having a moan when I see other people’s posts about their lives, I am so well in comparison and probably the majority of people would swap with me in a heartbeat! Unfortunately just feeling so depressed right now, it feels like I’m battling my body and the nhs and I don’t have the energy for both. Thanks again guys, will get on to the GP or some private doctor man who will give me some damn answers! Sarah :slight_smile: x