I am also a snuffling,snotty mess as I feel a lot of things have come and hit me like a bus today. So a good old cry will solve everything.
I came away from the appointment feeling once again dismissed and let down almost, she gave a different opinion and even the letter the neuro has sent her is different to the copy I got!!
He's not mentioned the infection at all as a diagnosis. Instead he has said its Functional Neurological (or something functional I cant remember) She wrote down a web address to go home and read and she felt I would connect with parts written.
I text DH the link to the website Welcome - neurosymptoms.org and after a few minutes I got a text back saying Its me, the entire page is exactly me and everything I have ever said or mentioned. All in one place under one name.
I didnt believe him but I have sat down and read through all the symptoms and all the knock on effects of each and its like reading things ive posted here, things i have said out loud-Dh particularly pointed out the spasms I get which I liken to the feeling of someone walking over my grave is written exactly that way.
"Most people have had the experience of jumping or jerking as they are dropping off to sleep. These movements are called 'hypnic jerks'.
Most people are also familiar with the random body 'shudder' that some people get. This is sometimes described as 'walking on someones grave' because of the way it moves quickly through the body". this is what I get daily. Ill link the video of it later.
It lists everything,
- the eye problems
- gait problems walking with one stiff leg being heavier
- the small steps taken as if on ice
- the left hand side being the more commonly affected whilst the right is uneffected.
- functional tremors
- dissociation and zoning out
- pain
- fatigue like CFS
- headaches
- slurred speech and forgetting words
- Fleeting sensations - including twitches, buzzing sensations, electric shock sensations
to mention just a few! all the above I have mentioned on here previously.
I cant begin to describe how it felt reading something which people are now thinking fits what I have and that it actually fits better than "infection" I just burst in to tears. Ive said to gp I feel u all think its in my head, theres a whole section on this website that says you feel it is BUT it isnt. Its very real. The pain is real the symptoms are real.
Its all the symptoms of a real neurological disorder such as ms or stroke yet physically theres been no damage to the brain or nerves. But the brain (for unknown reasons) interprets the body in to thinking it has and giving u the symptoms.
It also mentions how to deal with people and jobs/benefit applications with this disorder.
- It may be that your main problem is fatigue in which case calling the problem 'Chronic Fatigue Syndrome with functional neurological symptoms' may help define it for everyone.
- If your main problem is pain, calling the problem 'Chronic Pain with functional neurological symptoms' may help define it
She also pointed out GP really should be following the neuros letter re the medication and up my amitriptyline massively. She said that would make a big difference. Shes also said to ask her to be sent to a pain clinic. So I will write a letter to gp and pop it in tomorrow. I dont see the point of another wasted trip to her when I can just put it all in a letter and ask. Ill keep a copy as well so if this referral or meds doesn't improve I've got proof I asked for it as well as neuro.
She kept focusing though (this is my one complaint, admit it, you knew there was one coming lol) on saying i waddle like a penguin as im convinced my body is too weak to hold me up and im scared of falling??
I said thats not something ive ever thought would happen. Sure my legs feel like jelly but as i said to gp I dont feel ever to the point where i would collapse or fall. But she kept insisting I was adjusting my walk to protect my leg?!
I said Ive walked with a waddle 5+ years.
It used to take about 3 miles before it really kicked in with pain and fatigue or by the end of a really busy shift but not once was it fall related its always been pain.
My knees were sore I walked funny which hurt my back..... nope she would bring up the "dont be scared you'll fall" speech when standing. Even mum tried to explain it but she was fixated on it. The orthopedic I saw some 5 years ago said its my back causing my unusual gait. Hey ho. She was shocked when I told her it was one of the orthos from the same hosp we were in....I also got slightly shirty when she said the pain i had in foot which has now gone has left me thinking i need to walk funny to avoid hurting it ( my foot never hurt) and if I had been seen sooner it could have been corrected before it got this bad......I pointed out ive waited 14 weeks for this appointment
and not through want of trying either. I dont really know what to make of it all. Ill just keep digesting it I think for a few days and go from there. Knowing what I have going on is real is a huge relief. Knowing it may or may not improve and has turned my life upside down is harder to accept long term.
1. You have something common – you are not weird
2. You do have something genuine – you are not imagining it
3. You have symptoms that are potentially reversible
4. Its not your fault that you have these symptoms
5. But you will need to put some effort into getting better
The principles of rehabilitation in this situation are to recognise that you probably are doing a bit too much on the good days and not enough on the bad days.
Set yourself a modest task, it might be a walk to the shop, it might just be a small job in the house. Make it something that is a bit less than you would do on your best day but more than you would do on your worst.
If you stick to the SAME level of activity every day, hopefully you'll find that after a while, perhaps a few weeks, this SAME level of activity may make you just a little less tired than it did before, or cause just a little less pain.
You will still have days when you feel as if you're "back to square one". But if you're improving slowly overall, thats the main thing
So, Ive been given some more core strengthening exercises to try and do 3 times a day. I see her again on 7th April. In the mean time, who knows!
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