New Member


#1

Hi All

Many Thanks for adding me to your community.I have only just started to visit the GP with my symptoms after i admitted to my wife i am having issues with my daily life,to which i have been marched to see them.I have kept most of them hidden and recently been suffering in silence.I suppose i am looking for support as most of my symptoms lead to having slight PD 

so here goes 

A little background on myself , I am 45 and was a Infantry Soldier straight from school and spent 10 years of my life there,thus the bad spelling.

After leaving the services in 96 i retrained as a Rigger and Industrial Abseiler working all over the world.11 years ago i started my own Rigging company,which is doing really well .I have always led from the front being the one who climbed the highest and carried the heaviest weight and is well known in the industry for completing the difficult jobs.

2 years ago i contracted a virus that Ube known to  me at the time led to a heart attack.Heart all fine with good function now ,infact i was running and training to return to full duties 2 weeks latter to the Doctors dismay,But i knew everything was fine the only person agreeing with me was the Cardio Consultant ,saying you know your own body better than anyone Steve.

The problems i have been having over the last year or so are completely different,i have researched my symptoms using sites like this and i guess what i am asking is how long does it take for diagnosis and can the professionals and is it common for another condition that anyone has heard of to be confused with PD.

I feel inside that something is widely wrong the way i am operating and looking at things.i have a range of symptoms sorry to list my symptoms like this but its the first time i have opend up about it and cant to my Family or GP.

I have a poor sleep pattern , with only 4 hours needed a night if that , Fatigue in the daytime is a great problem and has been noticed by my Family.I have always been so active.

I have lost at least 40 percent in strength in my left arm and shoulder.Although i do not have a resting tremor all the time i have had times when i have noticed it ,with looking and feeling i am pushing a shopping trolley over cobble stones.However my upper Arm constantly twitches and is visible to others.my hand is noticeably slower than my right and it is frustrating that i feel i have to consciously send extra signals to it to operate.Being left handed is a pain.

my left leg is always uncomfortable especially at night where i have to keep moving it or feel the erge to instantly get up and move.my ankles are always stiff ,infact the morning stiffness is all over,feeling like i have done major training the day previous.my toes on that foot are also constantly cold.

i have noticed my neck is always stiff.with a jerky up and down movement like a rachet spanner when going to drink.Also mood swings are becoming an issue.i have no reason for this ,none at all as life couldn't be better.

ill cut this short now as ive been going on a while ,its the most ive said about the subject and feel a little embarrassed. Anyones thoughts and advice would be great

Kind regards

Steve

 

 

 

 


#2

Hi Steve welcome to the forum . I am 46 and diagnosed last September . I had symptoms for a few years . Your symptoms echo what mine were really but it's my right side that's affected and I'm right handed . It is a pain !  

Your symptoms do sound like PD but it is very difficult to diagnose and unfortunately can take some time . There are other conditions that mimic Parkinson's too . usually a neurologist will assess the individual in clinic based largely on symptoms and his own experience . There is no definitive test for Parkinson's but they will do tests such as MRI blood tests nerve conduction tests to rule out other conditions . There is something called a DAT scan which is supposed to be the nearest test there is to getting a diagnosis but not 100% . It will show the loss of dopamine in the brain which we need for movement and is the 'feel good factor' . Hence the mood swings you are getting perhaps . 

It seems to be that a good response to the medication pretty much confirms the suspicions of PD from a neurological perspective . 

Keeping positive regular exercise is key if it is PD . It is a shock if it is PD I think the best thing if you can is to try and carry on as much as you can trying to do all what you enjoy . Keep busy read up on the subject but take some things with a pinch of salt . Don't frighten yourself . I generally feel so much better than I did a year ago . I've still got symptoms that they're trying to control but I am still running my own business and being a mum ( probably the more difficult of the two with two teenagers ! )

Very best wishes Steve . It's hard when you first post on the forum and express your feelings but you've done the right thing . There are so many people on here with a wealth of experience . I've said it before but I would've gone mad I think if it hadn't been for this forum as I was pretty sure I had parkinsons but didn't know where to turn . 


#3

Hi welcome to the group .

Everyone has slightly different symptoms and different path to diagnosis . Myself I had stiffness in morning for years before tremor on left and limp  appeared . In a way it's a relief to find out what it is although equally a shock . I was diagnosed at first meeting with my consultant just by watching the way I walk , finger tap ( lack of being able to tap thumb and first finger together repeatedly) and turning hands over and back repeatedly ( couldn't do that either!).  Some have a scan but I've not had one . Started on medication straight away and year on still have odd bad day but on good ones you wouldn't know anything wrong with me . Still working full time as nurse .im 57

So hang in there and push for neuro review with movement disorder specialist as soon as poss . 


#4

Welcome, Steve!

Your symptoms do sound like typical PD symptoms.  Almost all those you describe I have had at some time in my history of this disease.  And though I start with the disclaimer that I am not medically qualified to judge,  I suspect you probably have too many symptoms for it to be something other than PD.   But don't despair -- this is far, far from being the worst disease you could contract.

For most patients, PD is a slow-moving illness and is treatable by medications.  Right now, however, you are still in the phase we all go through: distress over having PD and mourning for your lost health.  You mention mood swings as well.  Depression is often a part of PD that many pwp experience, some to a greater extent than others.  Many take anti-depressants.

Since you have not yet shared your diagnosis with your family, you are carrying a heavy burden.  So never feel that you have to apologise for a long post or for listing elements of your case.  Here you are sharing with people who have been in your situation and recall it only too well.  It is important to be able to confide in someone or to get a little understanding from others like you.

My case started very much like yours.  The good news is that that was 18 years ago, and I am still living the same life as ever and disguising the mild symptoms that I have.  You may go a long way before PD really has a heavy impact on your life if you find the right combination of meds and if you keep exercising.  I consider those the two most important things any pwp can do to help himself.  Since you have led such an active life, you feel the loss of strength and coordination more than some of us might.  But you may be surprised at how much medication can do to restore you to your former capabilities for years.

I wish you the best and hope you will post again.

J


#5

Hi Guys
Many thanks for your kind words ,they are a real help.My GP rang yesterday to say my Bloods are back and are Normal.As no one was in i raised my concerns with Her and opened up a bit more about what was going on.You see my Wife was with me for the initial consultation because i would have found a way to wriggle out of it and not go.
I asked if PD was something She was thinking about.She confirmed that it was but was expecting me to show signs of more rigidity in my left arm muscles instead of the twitching.I informed Her that i haven't noticed that or difficulty walking ,apart from the odd dizzy spell.
She has insisted that I see a Neurologist and i must say was very caring on the phone.And concerned for my well being.I dont see Doctors often even wriggled out of the follow up appointments after i had the Viral Myocaditis 2 years ago. which she told me off for.I had put these symptons down to all the meds they had put me on for that.I came off all meds 12 months ago and thought it was just my body adjusting to be off them.
so we will just have to see what the Neurologist has to say,reading some of the forum entries on this site is such a help.And its good to know that there are such lovely understanding people out there.
I hope you all have a cracking Weekend
Steve


#6

 

Mornin

I Used too be very active too, So i became aware something was wrong with me when i started slowing down, the daily routine at work and out of it became difficult and then impossible, Mood or attitude through frustration of not being able anymore was a issue for me as well and those around me frustrated that i wasn't me anymore, I had lost my sparkle  as one of the ladies i worked with said, But i didn't know the reasons for it then, i also didn't sleep very well I had very vivid violent dreams all that started to bother me.

I went too the doctor, i have had a tremor for 15 yrs+ but always dismissed it.

The usual blood tests followed and then eventually a trip too the neuro,after history taking(your symptoms ect) and exercises(dexterity/fine finger/movements) he pointed too the possibility of PD, another blood test for Wilson's disease too discount that as it displays similar symptoms too PD, and then Nerve conduction tests (to rule out motor neurone disease i think??) and then a MRI.

All standard stuff.

My journey to diagnosis took about a year from start too finish with a dat scan too support the diagnosis.