Im losing control of my body...please help
Posted , 6 users are following.
Since i have been 7 year old (now 26) i have sufferd from hemiplegic migrances, paralising my right side.
For the past year or so it has got bad where i cant speak, walk or even feel my whole body now. I constantly feel like i am going to have a bad turn and forget my own name from time to time.
I have been to the neurologist who wont even give me a scan and says it just a migrane last year.
On occasion i have woken up and peed without knowing and waking up with my legs shaking and my sight has got so bad i can barley see.
No one is taken this serious but im terrifed its going to get worst and cant even leave the house in fear im going to have a bad turn and not be able to walk off a bus or speak.
I feel like im wasting the doctors time as he keeps telling me to just take paracetomal.
Please help.
0 likes, 24 replies
susanne49014 katie3966
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sally61216 katie3966
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katie3966
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I just feel like I'm wasting their time they just keep telling me it's Normal.
It can't be normal when you wake up completely paralysed and can take hours before I can move. No matter how many times I go to the doctors they don't listen
I was going to go private to even get a scan to see if there is any abnormalities as brain tumors seem to happen in my family eg dad grandad and his dad but it's so expensive.
Can I just ask for a 2nd opinion?
X
robyn33225 katie3966
Posted
I can't believe they are fobbing you off like that. It's not fair!
I've just come back from an appointment at the national hospital queens square in London. Try get a Referal there. They diagnosed me with migraine of the brain stem which effectively means my brain stem isn't functioning properly and giving me hear awful symptoms. It took me two years to get a diagnosis, I kept getting robbed off too.
You should not be on paracetamol that's a joke!
Can you go to a different gp and get a Referal to a neurologist? Xx
robyn33225
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Considering you've dealt with this for quite some time it most likely isn't anything like a tumour so try not to worry too much, however I'm not a doctor so again request a ct or MRI. I've had both. Xx
katie3966
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So when I went back last month he just said try paracetamol and come back in 6 months.
I seen botox treatment on the TV and asked about that he saysits hard to get it on the NHS now.
I shall go to the doctors again and ask to speak to someone else
Thanks
robyn33225 katie3966
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I'm 27 so similar age to you and it's awful, I completely sympathise with you.
Hope you're okay
robyn33225
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StevenRose katie3966
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Your specialist is just being lazy about Botox, its easy to get it on the NHS you just have to have the right criteria and he should deal with that after what you have had to put up with,
NAG HIM!
StevenRose katie3966
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As I am someone who has had hemaplegic migraines too, I can also sympathise with you.
They are not a normal migraine and you get different issues with them too.
What I have learnt dealing with the medical proffesion is you have to make a nuisance of yourself sometimes to get som action in your favour.
I agree with Susanne and Robyn, you need to see a proper migraine specialist neurologist, who wont tell you such rubbish as your first one did.
You need an MRI scan to start with then they can go from there.
As Robyn knows Flunarizine is my prefered medicine for this as is Botox injections. This combo for me has proved to be a life changer for me.
Good luck Katie and nag them drs, Go back to your GP and start to nag him first, dont let them fob you off.
Take care and let us know how you get on
robyn33225 StevenRose
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Hope all is well with you!
StevenRose robyn33225
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had a bad year last year, it kicked off my HM again when my mum died,
Lucky for me that my company provides counselling else it would have been many more HM episodes and hospital again.
susanne49014 katie3966
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he said that he would let me kmow. I keep waiting. Please keep pushing for some answers. I also have many test, MRI's etc. Probably the tests will not show anything except that you suffer from HM. Keep pushing your doctor!!!!!
andrew89090 katie3966
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It sounds to me that you need to go down the preventative route stop it before it happens,
I've just been diagnosed with chronic migraine but never really get a headache I get a number of other symptoms which can wipe me out,
my neurologist prescribed nortriptyline for me just before Christmas starting on 10 mg a day working up to as much as 70 mg a day I didn't think they were working at first but at 50 mg my symptoms have started to settled down which is good because I have it everyday ruining my business & family life so hopefully at 70 mg they will go it took about a month before I really started to think they were doing anything, the side effects aren't that bad they just make you have a dry mouth when upping the dose mainly and a bit sleepy which is why you have them before bed,
I found a forum for people taking nortriptyline for migraines and out of 100+ people taking them that reviewed it came back with an 8.4 out of 10 so they must be doing something right just google nortriptyline migraine prevention review you should find it, good luck and remember the preventative take a while to start working so don't give up to soon
Andrew
susanne49014 katie3966
Posted