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please watch my video, want advice :)

hey, i have many symptoms that present as MS but i think it probably is not and so does my neurologist especially after MRI came clean. I find my neurologist difficult though, not good for listening and seems to be clutching at straws and is not sure really what is going on with me. i’m going to be tested to pots but it doesn’t fit at all for me either.

I have this thing that i can’t find anything about online, when i tense a muscle they spasm like crazy, at least they did before amitriptyline, now they still spasm but much less, and this drug has helped me a great deal.

here is a link to a video of what happens, here i am just thensing the muscles in my arms, the movement is involuntary, but stops when i relax muscles. i feel this is why i was in so much pain, like the muscles are working against eachother or something.

http://www.youtube.com/watch?v=y47fKt4Ftvo&feature=youtu.be

please if someone else has this let me know :slight_smile:

thanks

I have no idea, never seen anything like that before, must be horrid. If your Neuro is not getting to the bottom of things, maybe it’s worth asking for a second opinion? Hope it gets sorted for you, good luck.

Leora

I’m still trying to convince my neuro I’m not imagining everything, I haven’t shown him this yet, forgot as he would not let me use notes. 2nd appointment in two weeks, hoping he will let me speak this time

I’m confused about how he can ‘not let you use notes’? That’s not his decision to make. Yeah he should definitely let you speak, you are the patient after all. How is he going to find the problem if you can’t communicate your problems properly? If your next appointment is as non productive, I would def seek another neuro’s opinion . He sounds like a hack, Good luck though, hope you find an answer.

I think he was having a bad day, he was shouting at receptionist whilst I was in waiting room because my notes weren’t ready, then he got more upset because he thought I was coming about a tremor but I came with many many symptoms. I think he was not well prepared… I’ve found these people very proud, too proud often.

I agree with getting a second opinion. If he won’t let you speak just tense your muscles… he might realise there is something going on then!

Ps. What hospital??

hehe i will do next time, luckily for me, i assume due to amitriptilyne is has calmed down a lot :slight_smile: although these symtoms started as attacks so it’s possible it would have all calmed down on its own, who can know.

it was whipps cross.

what really frustrates me is you will have a bad day, go to hospital, a dr will give some advice, say they will send notes to gp/neuro, but it never happens, then your usual carers all bicker about the advice you were given, i’m fed up of listening to them bitch about eachother, they need to realise they all are the same group, working together.

I agree with that!! I have no idea where that is… just sounded so like my neuro hence me asking :slight_smile: Maybe you could see the GP again and show him/her the video? And your GP can arrange the second opinion. It is your health at the end of the day and you are entitled to find out what is causing this. They are obliged to find the answers for you.

i already planned that. My gp thinks it’s BFS but neuro says it can’t be, but he didn’t let me give him the full picture. I was told by hospital dr to wright a diary, so i did, but moment he saw i had diary he accused me of researching and convincing myself i had symtpomsand told me to put diary down and never do one again (i’d already stopped it weeks before anyway as things got much better for most part). every symptom in my diary happened before i recorded them and knew anything about anything.

It frustrated me because i’d wrote that thing, adding stuff from last year, to give him a nice picture of exactly what has happened, and he would not even look at it or let me reference it.

he keeps pushing the stress anxiety angle but i’m the happiest i’ve been in my life last few years, and i deal with pressure very well and have no anxiety problems at all. it’s something that sets me apart in my line of work and has helped me succeed.

He sounds like he isn’t even doing his job properly. My doctor was thrilled I had written down a symptom diary when I first went in to get a referral and has told me to write one for the neuro too. I’d say get a second opinion and I’d personally put a complaint in about him.

Good luck! x

Yeah, mine was more than happy when I showed up with notes written down.

Apologies that I can’t watch your video as I’m at work

Sonia x

glad i’m not the only one who thought his attitude was odd :slight_smile:

glad i’m not the only one who thought his attitude was odd :slight_smile: