lol Suzy im glad u are off to see the neurologist soon, not so you will find out if u have parkinsons coz im really hoping and praying you havent, but tof ind out once and for all what the problem is, so you can crack on with yor life. im sure there isnt anything major and hoping its just a small problem of which can be cured with an asperin lol or a good dose of fun & laughter...............hehe............*winks*
your a lovely girl you and your boyfriend dont deserve any of this, best of luck and think & stay n keep positive okie dokie...........or there will be spankins for you pretty lady hehehe
Hehe ok thanks Hugh, yeah I guess the ideal situation would be getting a diagnosis but something easily fixable, to be honest I doubt that will happen though! But we'll see, I just wanna know.
sorry I didn't reply when things were bad with you about a week back, (was away and am too clumsy for them smartphones). Am glad things are better with your fella. All best for your appointment,
Don't know if any of this would be any use for you - just ideas
before I saw the movement disorder consultant, I asked old friends to write letters describing each area of neuro problems, what I couldn't do, and how it'd got worse over the years,
and I made up a questionnaire with some yes/no questions on the same thing, it was quicker than a letter, so wasn't such a big thing to ask
A friend filmed me in short clips freezing, wobbling, not being able to speak etc
and I brought the dr a copy of it all.
I don't know if all this helped him to take me serious, or if he was just a different kind of person and could cope with knowing that longterm misdiagnosis happens.
your swallowing problem sounds like it could be a bit unsafe, so they'd maybe want to be very sure they've looked at physical causes. drs self interest could help!
Thanks for the tip, I dont think ive got time to get friends to do anything before Thursday but my mum is coming with me cos she can remember stuff I cant! Ive videoed my hand tremor when its bad and when my feet are in spasm and twitching, and ive been keeping a symptom diary so I hope that will help. Yeah im hoping even if the doc doesnt care he will find it an interesting case and look into it cos hes curious! Yeah the swallowing isnt good, I havent got anything big stuck (I try and chew well and I cant fit big chunks in my mouth anyway cos my jaw is dodgy) but its not nice for anyone when im having to cough food back out in a restaurant and try and stop it flying out my mouth! Just want it to be my appt now so I know who im dealing with and then what im dealing with! My gp wrote quite a good referral letter so that might help him take me seriously, we'll see! Thanks rhubarb :-)
Hi everyone, just an update. I had my neuro appointment, I still dont know any more than I did but he hasnt just dismissed me so thats good. Hes a fairly quiet chap, we went through my history (well my mum did cos I cant remember most of it!), he read my symptom diary and made notes and watched my video of my twitchy feet a couple of times. He did some tests and examined me, I dont know if anything stood out or showed anything, he wasnt giving anything away! He did say my symptoms are unusual but I already know that! He asked what my feelings were on psychogenic diagnoses and I told him that I know emotions play a part in it but I feel theres an underlying problem and that emotions just aggrevate it. He sent me for blood tests, which included Wilsons disease cos I saw he had written copper on the sheet, he said he would see me in clinic with the results and he wanted to find out what was done at Kings when I was here 9 years ago, and he said he would probably do a brain scan. So at least hes looking into it, I did kinda get the impression though that he too thinks it might be psychogenic but we'll see. Almost fainted at the blood test (they took 7 bottles which is too much for me I think in this weakened state!) but I went back to work and made it through the day so Im pleased with myself, especially seeing as my fingers are curled up. Hope everyone is ok today x
Hi, Suzynola7. Although you didn't get the answers you hoped for it sounds as if you were listened to and taken seriously. These things do take some time , but with the new Neuro hopefully he will find out what is wrong. flo
Yeah thanks Flo, as much as Id have liked answers today I didnt expect to get any, I know they need to do tests etc first to get more of an idea of whats going on, I hope I do get somewhere!
Suzy, it sounds like a great start to me! The doctor is proceeding with lab tests and more, so he is obviously taking your case seriously. Also, I think you gave the ideal answer to his question on psychogenic causes. If the patient protests and refuses to consider the possibility, some doctors sense denial. You made it clear that you don't believe it to be true but might see it as a secondary factor. Well done!
Hoping you'll feel better while awaiting the next step,
this is me on the left with my Bro who thinks you are gorgeous, he keeps pestering me to get your e mail address or cell phone number, his son michael, who has a roofing business told me to tell you he will check your roofing anytime? he had a rather lecherous look on his face at the time so I GAVE HIM A SMACK. talking about you like that is disrespectful
At last Suzy
You are in the pipe, 5x5,and heading truue,I wish you all the very best sunbeam as I have said to you before its a crying shame you are afflicted in this way, so young so beautiful , you shold have it made, but no the bulk of your energy goes into fighting off whatever is crippling you, reading your posts over the last weeks It looks like parky, but you will find out any day now if it is parky you must prepare for combat but you are very strong and like old Fedex you will not back off I am proud of you Suzy keep your guard up sweetheart you are been called to arms.
Thank you :-) yeah J Ive had a lot of time to think how I feel about psychogenic vs physiological hehe, its obvious that stress etc does make things worse so id be silly to deny it! I think I feel a bit more positive knowing at least its being looked into. Hehe Fed, tell them im not worth the effort haha! You do make me laugh. I think im prepared to deal with whatever what comes my way, ive been struggling and fighting my whole life, may as well carry on! Off to a photoshoot today and then a cabaret later, im gonna be knackered! Should be fun though, I do like a chance to get dressed up, nobody knows im ill then! Hope your both doing ok x
this is me on the left with my Bro who thinks you are gorgeous, he keeps pestering me to get your e mail address or cell phone number, his son michael, who has a roofing business told me to tell you he will check your roofing anytime? he had a rather lecherous look on his face at the time so I GAVE HIM A SMACK. talking about you like that is disrespectful