Hi and hello


#1

 

Hi everyone..

I've been reading this forum for a while now, well for the last few months on and off,I've been unwell for nearly a year now or i should say i've noticed i have been unwell for a year but in truth i think i have been unwell for a lot longer but only everything has started too come together in the last year.

I've had a tremor for a while, it started as something barely noticeable in one hand and i took no notice, just one of those things but then work noticed and so did customers too until i couldn't function properly in my job, it was difficult too hold and manipulate things,and i had a tremor just doing nothing at all as well and now in both hands,Not only that i slowed down in everything i did in work and out of it, the simplest of things suddenly became the most difficult when they should of been easy, i'd been doing those things at work and in play for years.

Walking,angling,photography were out of reach and sometimes my memory of  people and familar and how i used too do things escapes me as well which adds too the frustration.

Things with  n.h.s. through my illness have been rather slow in a year, in another week i have only my second appointment with the neuro so i haven't got too a actual diagnosis as of yet but he did say on my previous visit 'explicitly' the chance of being 'young onset' which is why i have been reading this page to educate myself about parkinsons(and all the strange acronyms) and a insight on how it effects every day people who suffer it even if nothing is set in stone for myself.

I do feel even though i don't have it confirmed yet, reading there could be worse things too have and in a way i do have something  very wrong with myself and in a way if is parkinsons it would be a relief too be told i do. not only too know what i'm fighting each day and night but too get on with Life.

J.

 

 


#2

Welcome Sea Angler...good namebig grin i used to enjoy coarse fishing years ago with my family but couldnt get into sea angling. Anyway pleased that you have posted because you will get all the help and support you need from the good folk on the forum. 

I agree about getting a diagnosis, because i was relieved to finally find out why i had been feeling so poorly for so long with all the various symptoms....going back to at least 2009, i was finally diagnosed in feb 2013, though i had a pretty good idea that is what it was. The meds i take control the symptoms pretty well and friends say that they would not know that i have Parky!  

I wish you all the best and keep posting, 

Dolly razz


#3

Hi Sea angler

and welcome to the forum , you do say in your post ' young onset '  how old are you ? , I  was diagnosed in August 2013  when i was 47 yrs old  i must have been one of the lucky ones i guess , lucky in the fact that on my first appointment with the neurologist he  said he was more than certain that i had Parkinsons , i had a idea it may have been parkinsons before i had my appointment it was something my gp said that she was not convinced it was essential tremor  so referred me to a neurologist  i went home and consulted with Dr Google  who kept saying Essential tremor or Parkinsons  given my gp had aleready  ruled ET out i was expecting a pd diagnosis , but it still came has a shock  and i remeber saying to the neurologist that i was to young to have Parkinsons , 3 weeks after i was diagnosed with pd my mother was also diagnosed with pd  so when i went to see my neurologist 3 months later he was completely sure it was Parkinsons

As you say there are indeed worse things to have than Parkinsons in most people it is slowly progressive a lot of people on the forum have had it for many years and still lead a fairly active life as Dolly said the meds do control the symptoms quite well

All the best

Shelly


#4

 

hi and thanks to both of you for the welcome

I am 44 at present, i suppose it does and can take a long time too get a diagnosis,some diagnosis are right straight away and some wrong that is one thing i have picked up from the forum  and page as there are many different symptoms beyond the main ones of tremor,slowness,rigidity.

Some of the main symptoms fit with Me(tremor,slowness) and some i don't have at present reading the main page it does says each person does and can suffer different symptoms and not everyone's journey is the same

 Some symptoms the neurologist says i have are a separate problem from the core of tremor and slowness, i suffer pain and numbness(which seemed too have thrown the neurologist a bit) although pain is listed within the symptoms of the main page, i also have fatigue and sleeplessness,troubles turning in bed i liken it too horizontal climbing lol and sometimes i don't know why i bite my tongue in my sleep??.

I'm on meds for pain mostly at the moment other than 'propranolol' for tremor which doesn't really suppress it but he didn't change anything from prescription from my first visit.

 


#5

Hi Sea Angler

I'm no doctor, probably not all that good at being an expert patient. But I think I'd press for a dx on your visit. Or at least something more useful than another yearly visit. Yes, you're young, yes dx is often not straightforward, yes other problems might be confusing the case. But if your symptoms are progressing, I can see why you'd want progression in dx too. So, your neuro: is s/he a specialist in movement disorders? (that's what NICE guidelines recommend).

Dolly would say, make a list of all your symptoms to take with you so's you don't forget anything. I'd go further: take with you a person, too.

Love the horizontal climbing: best description I've heard.

Hope you make progress

Best

Semele


#6

hi

On my first visit i did write out all i could think of in a list  and gave it too him although my memory fails me sometimes so i am sure i prob forgot something, i thought i'd do it because i couldn't be sure what the G.p wrote too him in referral, sometimes with the G.p i had too remind him after each appointment the reason i was there.

I don't know what he'll say on my next visit, my results of m.r.i  i guess and other test's which i don't have yet other than a test for wilsons disease which came back negative, I can think of a few changes i can ring through the passage of time but , he might throw a curve ball yet.

I spose it would be helpful if G.p's told you what too expect and prepare for on the first couple of appointments.

J.


#7

Maybe your neuro is waiting for the results from the other tests to confirm his diagnosis. i had a mri scan and also a blood test for wilsons disease which was negative, my neuro said that he asked for a mri to rule out other conditions as a mri can not diagnose parkinsons but it can msa which is a condition that mimics parkinsons  , so until other conditions are ruled out you are put under the umbrella diagnosis of parkinsonism

 All My gp said to me  was that it was 'something neurological ' she thought it was essential tremor but was not convinced as i had resting tremors so i went home and googled it and parkinsons kept coming up

 

 


#8

hi Shelly.

I had my visit and tests soon after  all in march, the neuro has been off sick since in that time,so i grabbed the first available appointment on his return and only found/got that by enquiring, he didn't mention m.s.a on my visit though i have had a quick look at it just now,but i hadn't heard of it before, there is a chance i spose i may have that or something else that mimic's  and not parkys, but then i didn't see tremor mentioned within the m.s.a page of symptoms..

One thing i was dreading was the wilsons outcome for some reason, i feared that more than when he mentioned young onset, All will be revealed soon and till then thanks all for the correspondence.

J.

 


#9

Hi all

I'm newly diagnosed 07/06/14 so still in shock a bit.

Am of work at the mo but hope to go back when my meds settle down .

Though that could be difficult as am HGV mechanic n that's difficult when your left hand shakes lol.

 


#10

hello michelle how are you today x


#11

Hello, sea angler --

Just found these posts and decided to add my thoughts.  Your description of your symptoms sounds to me like a textbook description of Parkinson's!  Everything you mentioned would be included in a list of PD symptoms, including the numbness.  I frequently experience numbness in my toes, for example.

Good luck with the next appointment!  I'm wagering you'll get the diagnosis you expect.  And it's really not the worst diagnosis in the world either, as you can tell if you have been reading this forum for a while.

Best regards,

J


#12

hi J

I  have numbness in my toes as well, first thing in the morning is the worst and during the day my fingers are numb, i had nerve conduction tests for it and my legs as i have been told i have reduced strength in my legs, i walk rather awkwardly and sometimes feel unbalanced, i used too walk miles and along side anyone with a pace now i toddle along behind, not that i don't have the drive in my mind too keep up, i just physically cant.

ive also noticed my right arm doesn't always swing, it just hangs there, and i often find my self thinking is it? when i am walking

I shouldn't in my mind jump the gun of diagnosis just yet, though it does seem the most logical, it will be a relief too finally have one what ever it is.


#13

Hi again, sea angler --

As you probably know, lack of arm swing is a classic PD symptom.  It was among my first signs.  But, as you say, we aren't the ones to diagnose ailments.  Good luck with your doc!

J


#14

Sea angler i would not worry to much about msa it is one of the conditions they rule out as j of grey said the list of symptoms does seem typically parkinsons , i hope you get a diagnosis soon

Hello pdshaky

havent i seen you some where before lol. hope it went well on Tuesday ?

 


#15

Hi sea angler,

I was diagnosed in June 2013 at Lincoln county hospital although the truth is before I was told it was PD I heavily suspected PD anyway. One piece of advice I can offer is KEEP FIGHTING & don't let the doubters get you down. Your emotions will be all over the place at the moment and you might even have loved ones who struggle to accept your diagnoses. My husband for instance said the day after I was told I got PD that I got the diagnoses I wanted, to which I replied no I got the diagnoses that is there.

You will have a entitlement to personal independent payment now (PIP) which is not based on your income and you will have to push & push them to finalise your claim. Mine took nearly 7 months from 3rd DEC till 10th June, which is short compared to others. And then you may well get tax credits on top think they have age cut off's like PIP do (64) think tax credits is 50? If you need advice I'm here for you & will help you anyway I can. The folks at Parkinson's UK are fab & I recommend a tour of their head office to you, I'm finishing mine on June 23rd 2014 & I've been educated by them & their website as to how our condition will effect us scary I know but the knowledge can help you keep up the fight. My best wishes to you & anyone whom is in your life, if you want to know more about me my facebook page is Karen Missenden Health & Wellness website.

 

Good Luck & Stay strong.

Karen xx

 


#16

 

Hi and thanks everyone.

On the outside i try too be just the same old me, but on the inside it is worrying and i do worry about it as it goes along i thought for a while i might get just get better and it'll all go away,something that's nothing, justifying and analysing every moment of the day, is it all just in my head?? i have asked myself more than once.

On the outside i look not much different, so long as i don't move or hide my hands from the eye of who i encounter, i had no label of what's wrong with me, i knew nothing of Parkinson's before the neuro suggested it other than it's a Big Illness and m.j fox has it.

It's a bit of Stigma in this country too be ill and look well, i am on e.s.a and i feel guilty having been on it for nearly a year without a answer for what ever it may be in the end, and i feel bad every time i have too approach a G.P for a fit note as if i am taking up there valuable time with a trivial matter. what's wrong with me?? they ask if it's not the original G.P who got me this far. i try too explain best as i can, but if they're asking it's almost feels the same as if they're doubting.

I'm not sure how i'd feel about PIP, as above i don't feel disabled enough just inconvenienced and not worthy of that, eventually i'd like too get back too some sort of work although i'm not sure what i could do, a job would have too fit around me than me fit the job advert.

J

 

 

 

 


#17

You are entitled to PIP my love it's your right as a registered disable person & there are enough people getting it whom are not entitled I really hope you get the love & support you need my GP is fantastic and I recommend you see only 2 of them for you ongoing condition. I see my own Dr Gough or Dr Williams Dr G has been by my side since day 1 and Dr W is my back up his farther has PD. They are my life line when my old bugger of a husband can't be still struggling to accept what's happen to me & us.

Live your life as best as you can I do and by trying to help you and others I know when my times up I will be going to those I have loved & lost.

 

I'm not religious just belive they are somewhere waiting for me.Lost so many to you it breaks my heart.

I just want to wrap you in my arms even the shaky one & show you we care.

If you want to meet let me know I'm in London from 21st till 24th June.

 

Kindest Regards K.


#18

hi betty

the G.P I  originally went too see is new too the surgery, or new when i went first went a year ago, he might not  be there for too long as it is a training placement for him,he has been good, he's not one of the perm partners of the practice,maybe he'll stay,maybe he wont, i don't really know the others,although they signed my 'fit' note as duty doctors i hadn't previously been too the surgery for 15+ yr's.

thanks for the offer of a hug and that i'm sure i'll be fine, i'm not a big traveller i'd need 5 yr's notice too get that far lol i don't really feel comfy in travelling more than 20 mins from home anymore, so hospital day alone will be a big day. today for instance down the bottom of the stairs is as far as ive been.

J


#19

I understand & if all I can do is be your friend through this forum then I'm there for you.

 

Stay safe BB


#20

Well..

The day of my second appointment, and i'm wondering why i bothered going, i arrived early, there was a note on a board 'running 20 mins behind', I was called in early and i was out in less than 10 mins. he went through my m.r.i and nerve conduction tests... All normal!!, like i knew they'd be anyway and then he said i'll get too the next bit.

'i'll send you off for a 'dat scan' might be a couple of months, i said i've been waiting 3 months for this moment and i only got this appointment because I made it enquireing why i was waiting, No one made one for me as you said they would ''i'd been away but i'm back now'' he said.

Are you going too commit too a diagnosis i enquired.

No some of your symptoms are not ''A typical".

He might just as well put it in a letter or over the phone or better still sent me for a 'dat scan' 3 months ago, and even then he said '' it might come back showing nothing''.

Limbo then limbo now.

No one seem too want too commit too the obvious.

And too be Honest i think he perhaps doesn't really know too much about Parkinsons  'im too young he said'.