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good morning all xx

hi all, hope that everyone is okay,this is only 2nd post since new forum because it was a bit confusing,it does not take much to get me confused lol :lol: ,especially with me meds ha ha, im still here in Limboland :? ,but i have managed to get an earlier appointment with my neuro for end of october rather than feb,the reason being is that since i saw him in feb and he said ill see you in a year, i have had some more wierd symptoms, still have fatigue on and off, had a really bad one recently that lasted a while and dizziness,that lasted a while,although now its back to on and off and also the new wierd on of the back and leg jerks which feel like electric shocks coming from inside which make my leg and back jump like ive been giving a min electric shock !! feels very strange, they only last seconds but they are not nice. My GP thought it was Duloxetine, cos he was trying me on them at the time so he took me off them and put me on 40mg of Amitriptiline,for taking on a night, these help me sleep a bit better but i still have the jerks so he said obviously not the Duloxetine.he has advised me to write all new symptoms down to take with me so im going to do that, i was going to anway, because on here i saw Rizzo had suggested that to someone, there has been some good advice givien to me on here and reading others so a big thank you as always to all who help and i hope you all take care. Love Chris xxxxxxxxxxxxxxxxxxxxxx

Hi Chris. Good news about the new appointment :slight_smile: A list is really helpful. Don’t just hand it over to the neuro - that’s a surefired way to have him not read it properly! So read it out to him and then give it to him if he wants it. Try and keep it top-line, e.g. vertigo for 3 weeks in August. If he wants more details, he’ll ask. The reason I say this is that we don’t get a lot of time with them - if your list is too detailed, there’s a very good chance you won’t get to go through it all! My “jerks” have been reduced by combining a neuropathic painkiller with baclofen. So you could always ask to try some baclofen on top of the amitriptyline. However, perhaps it might be a good idea to be still having them when you see the neuro?! (Yes, very machievallian!) I hope it goes really well and that you get some progress :slight_smile: Karen x

Hi Chris My turn to answer you now!! lol. btw, thank you so much for your kind reply to my earlier post. I just wanted to reply to yours, because your new symptoms are exactly the same as mine! I had 4 episodes of dizziness recently, one was a bad one. I also had the back jerk - like a lightning bolt that hit my back (I was with friends at the time & it visibly made me jump). This was immediately followed by a numb right hand & draining fatigue. However, when I mentioned it to my Neuro, he wasn’t particularly interested. I think he had looked at my notes before I went in & already decided to send me to ME/CFS specialist. I’m so pleased you have a supportive GP - that makes so much difference. October isn’t that far away now, so I really do hope your Neuro takes these new symptoms seriously & you make a bit of progress towards a dx. Do let us know how you get on Chris - I’ll be particularly interested. Take good care of yourself. One day we’ll have some answers :wink: Bren2 xxxx

rizzo27 wrote:

Hi Chris. Good news about the new appointment :slight_smile: A list is really helpful. Don’t just hand it over to the neuro - that’s a surefired way to have him not read it properly! So read it out to him and then give it to him if he wants it. Try and keep it top-line, e.g. vertigo for 3 weeks in August. If he wants more details, he’ll ask. The reason I say this is that we don’t get a lot of time with them - if your list is too detailed, there’s a very good chance you won’t get to go through it all! My “jerks” have been reduced by combining a neuropathic painkiller with baclofen. So you could always ask to try some baclofen on top of the amitriptyline. However, perhaps it might be a good idea to be still having them when you see the neuro?! (Yes, very machievallian!) I hope it goes really well and that you get some progress :slight_smile: Karen x

Hey Karen,thanks very much for the advice xx,I thought about keeping it to the point of new symptoms since I saw him cos he will have my others down from last time I was there. Cheers for telling me not to hand it to him,I was wondering how I will go about it,I know you dont have long,I will let you know how it goes and many thanks Hun,hope you are ok :slight_smile: . Take care Chris xxxxx

[b][a=#000080]Hi Bren,lovely to hear from you and your welcome about my post,I just hope you find out what’s happening to you,isn’t it awful,I sympathise with you.it’s awful he didnt listen to you as that’s all you want and try and help you. Yes the jerks,weird things,I’ve not experienced anything like them before,and still have fatigue on and off,and I’ve had a lot of bother with dizziness l particularly of late and my back has been very painful,so not helping,but what can you do but of on best you can,nice to hear from you and please let me know how you go with new consultant thanks Hun. Look after yourself love Chris xxxx