Hello - Introduction


#1

Hello,

I've just joined, because I've been lurking here and reading lots of posts that sound just like me.  My mum has had Parkinson's for 16 years and is in a bad way, so the thought of having this myself is especially worrying - hence my being in denial for such a long time!

I'm 41 now, and for many years, (at least 10), I've had strange spasms in my hands and other body parts, although this has very much been off and on.  I also have times when my facial expression is very frozen, especially when I'm stressed, (I even remember this happening when I was at school and very nervous.  My voice would also stay at one tone, so I was like a robot).  People have told me before that I don't move my mouth much when I speak.  And my daughter can't tell sometimes when I'm happy or when I'm angry.  I've also had internal tremors when nervous for several years.  And it's all been very on and off, so when doctors have put it down to stress I've thought that they might have a point.

Life has been very stressful for many years as I've been responsible for my mum's health and well-being, and that's meant that I had to give up my job, and haven't had so much time to spend with my family.  This has coincided with my getting strange pains in my head and my body, a much more constant internal tremor on the right side of my body, and the (left) side of my neck, pressure and pulling feelings in my head and now visible tremors that happen several times each day in my left thumb and eyelid.

All this is further muddled by the fact that I have Ehlers Danlos Syndrome, (hypermobility type).  My tremors are in my loosest joints, so I often ask myself whether joint laxity could be the cause.  (Although I think this is probably wishful thinking on my part!  Because I know that a lot of my symptoms are also ones that my mum's had).

I've been to see the GP recently and she says that these can all be symptoms of anxiety.  (They've said this each time I've been).  She was reluctant to refer to me to a neurologist, but said that she can if I want her to.  She said I should try to reduce the stress in my life and see what happens.  That seems to be an impossible thing at the moment, so I may go back for a referral.

So that's where I am at the moment.  My thoughts are: would there be any benefit to diagnosis at this stage?  I can cope with my symptoms as they are now.  I feel like I've had lots of them for a long time.  And I'm nervous to go on medication, as I feel that the side-effects have not been good at all for my mum.  (Genetically we seem to be very similar...)  Although obviously the tablets also helped her function for a long time.  If I knew for sure that I have Pd, would I become even more anxious and lose hope?  Would life be better or worse with a diagnosis?

I know most of these questions are impossible to answer!!  Just my thoughts.  Sorry this post is so long.


#2

Any advice or thoughts are very welcome.


#3

 

hello jayne

Up until the other year i'd never been one too visit my gp, i'd had a booster jab 20 or so year previously and they wrote too me too see if i was still around i was that much of a stranger, I'd had a tremor for yr's perhaps even decades but i always dismissed it as just something other  people would notice, it was a little troublesome later on in recent yr's with fine finger stuff tying complicated knots and stuff.

But i first went too my gp for pain and numbness in my hands, i didn't tie anything happening in life too parkinsons and the gp thought i might have carpal at first, but pain and the use of limbs became more intense physically and things mentally too were having a effect, i was no longer able too function at work. the usual blood test's followed and the standard Question of how's your mood?.

I went on the course for stress and anxiety they send people on, chatting too others there, we were all there for different reasons other than what the course was telling us 'too stop drinking', none of us were drinkers,only once did it mention stress from 'illness', if your ill and you dont have the answers then your bound too be stressed from it, i relayed that too my G.P and only then did things move too a refferal.

Being reffered rather than stuck in limbo was a relief i finally felt something was happening, but i waited 5 months for that appointment, at the end of that appointment there was something too aim for, and at diagnosis it was a massive relief, a huge weight of stress lifted from my shoulders, too be told yes your right no more doubting or questioning yourself it is parkinsons.

 


#4

My first take was much as Sea Angler.  You are already worried about the possibility so it might be as well to settle it. You should see a neurologist specialising in movement disorders ideally.   I had under-active thyroid symptoms for a long time before I collapsed at school (I was a teacher)and had a brief period (less than an hour) of what was I suppose hysterica blindness and it was in that instance a huge relief  to be diagnosed by a skin specialist who was dealing with my  thyroid related dry skin/infected eczma. 

I also suspected something neurological was up with me for a few years before obvious PD symptoms devleoped following a car crash..  But that time my head was firmly in the sand as my suspicion was a benign type of slow growing brain tumoour to which my body was adjusting every now and then and now I  find this rather strangeMost people seem to be rather shocked to get the PD diagnosis even if they have had suspicions.  My impression is that you are  lucky to get a neuro with a decent  bedside manner the diagnosis can be delivered somewhat unceremoniously.  I didn't take anyone withh me because my doctor didn't think it was PD.   Try ry and take someone with you because you don't always take much of what is said  at the time

I've just read that the   progress of the condition is slower in Young onset PWP's than with the elderly but being 75 myself I think it is also likely that when you are old everything gets dumped at the door of PD if you are not careful.and cponsequently symptoms go untreated     or worse treated by upping the PD meds  - to treat symptoms which may well be  unrelated to the PD.  .This is my pet theory but I woould stress that  I have no medical qualifications to justifyit.  Everyone is different with PD.  Five years after dx no one would know I had it.  Indeed, I have sat half an hour waiting to see the PD nurse who kept coming to the door and eventually realised that the woman sitting there must be  the 74 year old parkie she was waiting for..  I also now recognise many symptoms of which my mother complained as most probably being undiagnosed PD..  Dragging her leg, internal tremors, frozen shoulder etc. but no obvious tremor..

If yoou have not already done so, you should ask too have a "carer's assessment" by your local adult care team or other social service agency.  It does vary from county butt years care act has reinforced the duty of the local authorities  to l support carers with advice and signposting to such services ashere may be in your area.

Best wishes

 

 

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#5

Hello, I would like to introduce myself. I am a wife, mother and grandmother aged 65years. I was diagnosed in February 2012. I had pain in my left shoulder and arm which i consulted the doctor with a year earlier, I also had what i call internal shaking, When i became anxious or worried i had trouble with my speach. I later began to have a tremor that began in my left thumb then later my left arm and leg. I was relieved when i got my diagnosis as i had begun to think i had a brain tumor. I was told my Parkinsons was in its early stages and that as i was reasonable healthy it should be slow. I only began taking medication 8month ago. I take Ropinerole one 8mg on a morning and i have felt quite well recentley. I do worry about the future and how and when my symptoms will worsen but i try to stay positive and enjoy life while i can.


#6

Hi Lizzy65

Welcome to the forum, There's a lot of good people on here with a wealth of experience who are always willing to give help and advice , I was DX in June this year but have had symptoms for about five years. 

The feelling of relief is quite usual apparently as quite a few PWP have said the same myself included,

A good mind set and a good sense of humer plus keeping active are the main things you can do to help yourself, now I think I'm rambling so I will just say  hi n hello again plus goodnight.  LOL

  live well.  Cc


#7

Welcome to the forum Lizzy

My symptoms were much the same has yours  , i had a tremor in my left hand  i was aching  when i got out of bed in a morning and when i was getting up from a chair , then i developed a painful left shoulder and i also had internal tremors i felt like my entire body was shaking on the inside i went to my gp who referred me to a neurologist  and i was diagnosed with parkinsons in August 2013 when i was 47 yrs old

When i was first diagnosed i was really worried for my future and about what would happen to me  but my son said to me ' mom don't worry about what is going to happen 10 years from now  take one day at atime and has for  the future we will cross that bridge when we come to it ' how very true

Best wishes Lizzy x

 

 


#8

Thanks Shelly,

I seem to get more good times than bad and long may it last. You were a lot younger than me when diagnosed. I wish you all the best for the future. It is difficult not to worry about the future but people have lots worse and i believe enjoy what you can still do, none of us can see into the future.