new diagnosis to add to the collection

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new diagnosis to add to the collection

Post by robbo on Sat May 12, 2012 7:29 am

hi all , been a while since ive posted . hope your all good !!! Smile
i went to the RVI in Newcastle last wednesday and although i suffer severe hemiplegia , i couldnt understand why ive got issues with swollowing and power etc. the nurologist said i have something ive never heard of ....
Functional / neurological disorder. it means the software isnt working right in my brain and and causes all manor of issues. particular with weakness perminantly in my arm and leg , infact i have 75% of the symptoms ... so i now know that hemipligia isnt the cause oft hat, just makes it worse for a time. i suggested that my vasospasam of the coronary artries may be a cause as it could slow blood flow .. but they rules this out. i also said what about causeing hypoxia on the brain due to lack of blood. it turns out they havnt a clue as to what causes this and there is no cure, apart from him saying it there is a chance it may get better one day by itself ...
on a happier not i have now finally got DLA after months and long stressful battles .
robbo Very Happy


Last edited by robbo on Sat May 12, 2012 6:22 pm; edited 1 time in total (Reason for editing : incorrect spelling)
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Re: new diagnosis to add to the collection

Post by Tee on Sun May 13, 2012 8:55 pm

Hello robbo - nice to hear from you.

The DLA news is great Smile - One less stress.

Functional / neurological disorder........... hmmm interesting, can I ask did this start sudden - like after a big HM?

I ask as this is one thing that was brought up with me years ago -as a ? - it was when I was going through 'she has had a stoke' stage......... my left side was very weak... and mean everything on that side - even my left eye moved out as the muscle was so weak.... is it just muscle weakness or is there brain confusion too?

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tee

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Re: new diagnosis to add to the collection

Post by Sarah on Mon May 14, 2012 4:21 am

Have you had your vitamin B12 levels checked at all?
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Re: new diagnosis to add to the collection

Post by robbo on Mon May 14, 2012 5:16 am

hi tee and sarah , yes ive had all my bloods done and all was ok . i have gone natural with my blood thining pills and colestrol as well. i take b12 and vit e , omega3 fish oil , and garlic and q emzine at night. ive been taking them for 6 weeks and at the end of this month ill get all checked again.
this all started tee last june when i had 2 massive attacks which left me hospitalised for 2 weeks and required rehab after for 2 months. i have memory issues , with things ive done, and i get confuised easily as well. i got lost in newcastle a few weeks back , yet i know the centre well. my lhs has weakness all the time which doesnt go away. i have balance issues as well and if i walk one foot infront of the other ill fall . trying to balance on uneven surfaces is a right trial , people probably wonder how much ive had to drink Very Happy the symptoms ie swollow speach etc is apart of this the nurologist recons. they gave me a web site to check out , although it tells you all is real , they are very short on answers for it and clearly are guessing. the web addy is : www.nurosymptoms.org
robbo
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Re: new diagnosis to add to the collection

Post by brainbox on Thu Jun 14, 2012 6:25 am

hi robbo

forgive my tping im in middlle of migraine, functional weakness is what i told - its along the same lines as FND, i think FND is one Dr's MUPS (medically unexplained symptoms) basiclly its better than saying as a dr i think personally "i dont have a clue", yep defineltely guessing

have you been offered physio or OT to help FND?

i had this for about a month after a major hm attack which left me in hospital when two attacks came on top of other, left side was in long term hm attack with contant aura and then my right side was affected to, complete hemiplegia affected from my neck down

i can totoally sympathise as when there no answers we are just left to it

good news re your dla Very Happy



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Re: new diagnosis to add to the collection

Post by Alice on Tue Jul 03, 2012 1:24 am

Hi all,

I have just just read the thread of this discussion and wonder whether it applies to me ? I have just spent 6 days in hospital have been in A+E as emergency and Drs thought maybe a small stroke since symptoms were so similar. Left side migraine and left side weakness, pressure and excruciating pain on left side of head,poor balance, dizziness, difficulty with speech,hearing and swallowing. Only pain relief that worked was Oromorph-morphine derivative. Very scary 6 days in hospital. CT Scan was clear and MRi clear so diagnosed as severe migraine. Rather lost for words really, just worried and scared. Husband managed to get appointment with London clinic Neurologist for tomorrow but not sure where to start with what I ask for.Tried at preventatives and meds to help when migraine starts but none have helped and I am making my way through list of drugs. This episode has really left myself and Husband worried especially since dizziness remained for days and I collapsed on the ward when Physio was trying to get me to walk. Any ideas anyone? Desperate for help especially since I now get Headaches/migraines 20days a month as per my diary and having difficulty working. xx

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Re: new diagnosis to add to the collection

Post by Dr Pav Khaira on Tue Jul 03, 2012 4:01 am

Sounds like you're having quite severe symptoms. It is, unfortunately, normal for a lot of people!

What medications have you tried before?
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Re: new diagnosis to add to the collection

Post by Alice on Tue Jul 03, 2012 6:32 am

I was on amitriptyline and now on nortriptyline as preventative. I have tried high levels of ibuprofen and paracetemol. Norpraxyn with domperidone. 900mg Asprin with 500mg paracetemol plus antacid(Lansoprazole) to protect my stomach. Also cocodamol until Neurologist suggested that it is headache inducing. In the hospital Stroke cons prescribed sodium diclofenic which helps a little but I can't function on and can also be headache inducing with regular usage. the morphine derivative worked but of course used in hospitals only and is addictive so not great. Because I am on 3 anti -stroke medications(had a small stroke last year) I cannot take certain recognized migraine treatments. I am also on Thyroxine ( Graves disease). I hate taking so many drugs but not sure what I can do about that until I have a migraine management plan and can maybe drop a few drugs.

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Re: new diagnosis to add to the collection

Post by Dr Pav Khaira on Tue Jul 03, 2012 8:18 pm

Wow, heavy medications! Nortyp is often milder than amytyptiline

Sometimes it can be a battle of pain vs side effects
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Re: new diagnosis to add to the collection

Post by brainbox on Tue Jul 03, 2012 9:17 pm

good luck with your appt today
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