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Waiting and worried

Hi All I first had problems in 2007 where I was diagnosed with trigeminal neuralgia at the age of 22. I have have been on and off medication ever since. I had a MRI with showed some scarring on the Brain. I have fatigue. More recently I slurring in speech and unable to think get the words out I needed. Tripping over always the left foot. Really bad pains in legs to stop me in my tracks and make me cry I can only describe it like I’ve got cold in the bones. I had another appointment with my neurologist who ordered bloods and MRI. I now go and see them tomorrow for full results which is making very nervous. I sort of want a answer to why I feel like I do but so scared too for my future. On my last visit to the neurologist she said i have a left sided weakness which I wasn’t aware of. The other symptoms have settle down for now. My mum wants me to push for a reason and after 11 years I feel like I need one too. I had a letter about my recent MRI and at first I took it as positive then I read it again. It read as showed stable appearances from you previous MRI. Does that mean nothing has changed and if so why just not put that or has it showed stable changes in what they would expect. I’m so confused but at the same time I think I’m going to left without answers again. Any thoughts would be greatly appreciated as I am feeling very lost at present

hi

your gp will have received the same letter from your neuro so you could ask gp for his or her thoughts.

you can ring the neuro’s secretary and say that you need a better explanation.

we have all had different experiences of being given our diagnosis.

my neuro is a lovely man who felt so bad at not being able to tell me face to face that he rang my mobile.

unfortunately he had to pass me on to an ms specialist neuro.

don’t let stress get a hold of you, stress just makes everything worse.

there’s nothing to stop you following your dreams although they might take an alternative route.

carole x

Thank you for response Carole. I am with my specialist this afternoon so hopefully may have more to report or maybe no answers. I know I should not be stressed as this can make my situation worse. I have collapsed before and was out cold for 30 minutes which the specialist put down to stress. I am a very positive person normally and a big believer that things happen for a reason and make you stronger. I just want answers now to why these things happen and I know this part of the process can take a while. Thanks for kind words Helen

Hi Helen

By now, or soon you will have had your appointment and found out what the results of the scan really mean.

I truly hope that it’s good news and not bad.

Although at least if you are told it is MS, you should be able to get some disease modifying drugs which will reduce future relapses.

Let us know the result.

Sue

Hi seen my neurologist this afternoon and MRI scan showed no change in the white spots in my Brain good news. Doctor said no to ms or anything else sinister. So I am relieved but not totally happy. I asked what could be causing the symptoms I have had as after 11 years I feel like it’s all in my head. He said it is more likely to be dysfunctional nerves caused by stress within my life. Has anyone else ever been told this and what happened after this? I can’t seem to find anything on the nhs website to read about this. Helen

Hi Helen

It could be functional neurological disorder. Have a look at: https://fndhope.org/

I’m sure you feel deflated by the neurologist saying stress could cause neurological symptoms. It makes you feel like you’re imagining things or just not dealing with life properly. But it doesn’t mean your symptoms are any less real. Nor does it mean you should be able to just ignore them and carry on with life.

Try talking to your GP about this appointment and the neurologists view. It could be that your doctor can find a way to help.

Best of luck. Feel happy that you don’t have MS and try to work on ways to deal with the stress in your life. Not least of which are the neurological symptoms!

Sue

Hi Helen, I have just been told the same thing about the pain being nerve disfunction. I am still waiting for a new MRI though. I have a new baby and have had symptoms since his birth. I am scared too and in so much pain I can’t walk up and down the stairs properly. How are you feeling now?