Waiting for tests

About Parkinson's and health Newly diagnosed
1

Hopefully I'm posting this in the right place.

I'm Mark, I'm 42, and I'm from Swindon.

After sub consciously ignoring some symptoms for a few years, I finally faced up to what I was denying and accepted that I needed to see a doctor.

My symptoms are as follows:

External tremors in my arms and legs

Shaking and jolting while asleep

Foot Dragging

Swallowng issues

Masking- it used to upset me why people thought I was always so angry.

'Vibrating' feeling over the whole body

Falling if I stand quickly

Not having complete control of my hand when taking coffee out of a jar etc

Bursting into tears at the smallest thing

Lack of arm swing when walking

I know it probably sounds ridiculous ignoring all of the above, but they started so intermittently that I brushed them off. It was only when more than one instance of each of the above per week started happening that I couldn't pretend any longer.

I went to the doctor this week and explained all this, and it was one of the hardest things I have ever had to do. I think I realised at this point that there's probably been more denial involved than I had admitted to myself.

I'm back in for blood tests on Monday and then it's into whatever tests are the next step.

Part of me is still convinced I'm being a drama queen and a hypochondriac, but the other part of me is saying that I can't keep being naive about this.

Since going to the doctors and actually voicing my concerns, it feels like I have opened a floodgate. This week has been the worst by miles for symptoms, to the point that I haven't been able to hide some of them and work colleagues. Things that hasn't happened before have started as well, I couldn't get my arm behind me to put my jacket on yesterday.

I'm finding it really hard getting my head around this right now. One minute I feel like it's going to help so much putting a name to things that have been increasingly frustrating and embarrassing me, the next I feel scared that by admitting its something, I'm accepting it.

2

Hi Mark

Just wanted to send you a message of support.

It sounds like a pretty stressful time for you right now. I think it's good that you have gone to the doctor and are going forward for tests. It doesn't sound ridiculous to me that you ignored things, it's understandable to be frightened. I don't think you are being a drama queen either, you are naturally concerned about your health. It takes courage to aknowledge that something is not right and to take steps to finding out what is going on, so give yourself some credit for that.

I hope you have friends/family close, people you can talk to and gain some support? 

If you need a listening ear feel free to message me.

I'm Scott from London. I was diagnosed with PD last September when I was 37.

Best advice I was given by someone on this forum was to take a deep breath. Try not to get ahead of yourself, take it one step at a time.

Scott

1 Like
3

Hi Mark.  Before I was diagnosed 6 years ago, I was in denial and it took a long time before I told my colleagues. I have similar symptoms as you.  As you have now told your doctor he will put you in touch with your local neurologist and his backup team.  This will still be a long drawn out process but  they wont  want to rush a diagnosis.  If it is PD there is very good medication that will help, also ask to be put in touch with the local PD Nurse and PD branch.  They can give you help and support. All the best.      jr.

4

 

Mark

I had a Tremor for Years, i'd get the occasional comment at work by staff and customers, freinds would also notice a tremor whilst i was out or fishing, but it was subtle, it wasn't until i was out walking and i used too do a lot of it i noticed i was slowing down, a 10 min walk would take me a hour, we'd had a holiday break at work and when i went back too work i'd forgot the job i was doing and had done for years, i kept making mistakes, i couldn't take in instruction's and my work m8's became concerned and noticed i was ill before i noticed.

I'd became a danger too myself and those i worked with and the business of the job. it was frustrating and i had too pack in work, i went too my doc's, i'd never been one too be ill or go too see a doctor, i hadn't seen a doctor for 20 yr's.

he started with the carpal route first because my hands were numb but noticed my tremor, blood test route followed, along with the usual 'how's your mood', eventually i was sent too see a neuro, nerve conduction tests, m.r.i, wilson's test all followed, too eventually a dat scan confirming PD a year long experience.

It was a massive relief too be told rather than not knowing meaning i can get too grips with something rather than nothing, they'd been times when i'd questioned myself am i ill or  just imagining it, but that has gone.

5

Hi Scott, thanks for your response.

My dilemma is whether to tell people or not. I dont want to burden people when I cant tell them one way or another. Part of me wants to tell people so that they can be prepared if the diagnosis isnt good, but another part wants to avoid putting anyone through the same worry I will be going through. But if I dont tell them til diagnosis is confirmed, will it be a big shock for them to handle.

I honestly dont know what to say to people for the best.

Im definitely going to take your advice about not getting ahead of myself - Im analytical by nature, so my first response is to read up as much as I can, but right now that may just be causing me concern than I need!

Mark

6

Hi jr, I worry I will be impatient with a long drawn out process. I know full well that if its drawn out, it will be for all the right reasons, and I should be grateful for that.

I have taken your advice and looked up where my local PD branch meet up, its actually about 1/2 mile from where I live, so thats definitely something I will be looking into

Mark

7

HI Sea Angler, I know exactly what you mean regarding questioning yourself regarding symptoms. One day its bad and I admit to myself somethings wrong, the next day nothing happens and I wonder if its all imagination and self pity.

The struggle for me at work at the moment is that I open a file, and sometimes by the time the file is openend I have no recollection as to why I have opened it. My desk is now getting covered by little bits of paper with notes about what Im doing in case theres a 5 minute interruption and I lose track of what I was doing!

Mark

8

Hello Mark

When dx almost 2 years ago I found myself telling everyone, even just chatting to cab drivers.  But I am 68.So no worries about work.

I do wonder if you need to share some of your fear and pain with family and friends? Try not to worry about how they will cope.  This is about you and perhaps you need their support more than you want to admit?

You are at a difficult place - waiting to see a specialist and surfing the net for answers.  You maay, or may not, have Parkinson's.  The neurologist will, fairly speedily, work towards  diagnosis.

Is today the day when you might begin saying - I need to tell you that I 'aint been feeling too good and am waiting to see a specialist??!! 

Heartfelt greetings Aberwells

 

9

Hi all,

Had my blood tests yesterday - was slightly shocked to see 13 bottles lined up for filling, but it was comforting to know I was being listened to.

One of the tests they are having done is for Lupus as the strain that affects the brain can give similar symptoms to MS. Unfortunately it doesnt cover all the symptoms, but it makes me feel very confident in my doctor that she is investigating all avenues.

10

Well I think its time to update this thread...

I have spent the last week in hospital after my GP admitted me due to about 13hrs of non stop shaking.

The hospital did CT scans, MRI scans, Lumbar puncture and about 7,450 blood tests!! CT was clear, MRI was clear, my spinal fluid pressure is twice the normal level, and now just waiting on the specific bloods to come back.

He was quite honest about what they had tested for, ruled out, and what was still being looked into. And Parkinsons was one of the things he listed as being looked into (he listed that one first).

11

Welcome to the forum Mark

It can be a very worrying time when you are going through tests waiting diagnosis  i guess i was one of the lucky ones in the respect that i was given a parkinsons diagnosis on my first vist to the neurologist  i was diagnosed last year at 47 yrs old , i had had symptoms for about 4 or 5 yrs that started with a tremor in my left hand my gp put it down to anaemia then on  a couple of occassions i went back to my gp with other issues i was stiff and achy when getting up from a chair and out of bed in the morning gp was not to concerned and put it down to a thyroid problem i had then last year i developed a painful left shoulder and my tremor was getting worse and i also had a feeling like my body was shaking on the inside  , gp did a variety of blood tests which came back clear so she  said she suspected something neurological she said she thought essential tremor but was not convinced has i had a resting tremor which you do not have with ET  whilst waiting to go to my appointment i did a bit of researcg and essential tremor and parkinsons kept popping up my gp already ruled out essential tremor so i had parkinsons in mind when i went to see the neurologist who confirmed it , although i was sort of expecting it , it still came has a shock and a couple of weeks later my mum was also diagnosed with pd

Your definately not being a drama queen  you are the own best judge of your health , i do hope you get a diagnosis soon .

12

Hi mark sorry to hear you have been in hospital . Hope you're feeling better . I have recently been diagnosed -two months . I am trying to get my head around it . I feel like its gonna take some time . I have had problems for a few years general aches and pains stiffness frozen shoulder which was excruciating . I have a back problem anyway so put certain things down to that and kept thinking although not old I am getting older . I am 45 . My handwriting really deteriorated and movement in my right hand and fingers limited and felt so cold at times . They thought I needed shoulder op . I had physio injection nerve block referral to pain clinic . Then I began having problems with right leg - heavy foot trouble walking and tripping . I asked two doctors if they thought leg and shoulder may be connected and they said no . Was referred to orthopaedic consultant who referred me to neurologist immediately . He was adamant it wasn't a shoulder problem and he was right . It seems to take a long time with this problem to get an accurate diagnosis . It is very complex . I think there is still this thing that it only affects older people despite us all knowing about people like m j fox and Mohammed Ali . I was unaware it can affect the very young . There is someone on this forum who was diagnosed before the age of ten . I think he's in his forties now . I hope you get a diagnosis soon mark . Hang on in there . It's horrible waiting and not knowing but I don't think you will have to wait long now . They have done many tests . Have you confided in your family / friends ? I have told my family and a few close friends two people at work . They have all been really supportive . This forum has been the best support to me though . We are all here for you . 

13

I have told my parents, but I haven't told my children yet. I'm going to wait till I don't really have an option - they are both at Uni and I don't want to affect their study.

Had an awful day today, from waking at 7am through till about 8pm it's been constant shakes, jolts and tremors. Have also had a lot of muscle pain and headaches. It's been quite upsetting as yesterday was probably the best day in about 4 weeks.

I really hope that when they call me back to the hospital they have decided on the diagnosis.

14

Hi Mark

I know Becs on Facebook and she mentioned that you had joined this site. If you want to friend me on Facebook you are welcome to. I am John Barnett on there.

A bit about me is in this thread

http://www.parkinsons.org.uk/forum/thread/63345

15

Hi John, cheers for that - youre further down the diagnosis road than me so I may fire loads of questions at you!

Becs has been amazing. Its been hard on her, but she has been so supportive despite me being a right pain in the bum!

16

Well on a daily basis the symptoms seem to be getting worse. Every night I have at least one bout of very violent tremors / jolts, to the point where my whole body literally leaves the bed. The rest of the night Im constantly tremoring and twitching. Most days these subside by about 7:30am, but not always. I think I have had 2 unbroken 5 hour periods of sleep in the last 6 weeks.

Walking is REALLY hard now, Im very slow and its physically exhausting me. My right foot is dragging and the quad muscles constantly ache. Im now also getting the jolts during the day as well as the tremors - the jolts are much harder to hide than the tremors and Im really conscious of them.

Im also struggling with the muscle pain. When I get out of bed in the morning it feels like someone has kicked me 1000 times in the stomach, and my legs feel like I have run a marathon every night. My left shoulder is also constantly aching now.

Blimey, reading that back it sounds like I need taking to the scrapyard, not the hospital!! I dont think I have ever been so physically broken as I feel now.

I finally got my Neurologist appointment through... 3 weeks ago in hostpital I was told I would get my appointment and diagnosis within 4 weeks - after 3 weeks I have got my appointment and its not for another 5 weeks! I wanted to complain, but a friend has just told me about their colleague who got a neurologist appointment and it was 4 months out!!

I have since spoken to the Private Health scheme at work and I have an appointment this Friday with a neurologist! I cannot even begin to explain how much this has helped my mental positioning, but it has made me feel really bad for the people who do not have that option available to them.

Went to the doctors this morning to see if there was anything he could give me that would help me through this mentally and physcially - unfortunately it was a doctor who didnt seem overly interested and he just gave me a prescription for 200 Codeine tablets.

I honestly cannot believe how rapid the rate of deterioration has been over the last 6 weeks. That, more than anything, is REALLY scaring me.

17

Hello Mark4130, you certainly are having a tough time, hopefully you  will get some answers on friday. I am an undiagnosed, I do get some jolts but not as severe as you do. I have a shoulder pain but leaning over the laptop might be the culprit. At first, I thought, it's not too long to wait to see the Neurologist, and it isn't now, just a few weeks, but I am now feeling sressed about it. My memory problems are still ongoing, and yes, I feel scared. flo

18

 

Hi Flo and Mark.

I can relate too much of the above.

From the beginin of it for me i've had codeine for the aches and pain's, it did dull it to some extent but as time and PD i spose has gone on it helps less and i have more stronger aches and pains, for sleeping i was prescibed amitriptyline, if i  remember too take it early enough and can get off too sleep then i usually sleep soundly.But good nights sleep or not i still wake with that wasted feeling, i still get jolts at night too the point of throwing myself off the bed, and sometimes i bite my tongue as well.

im sure there is other pills out there more specific , but like many with appointments strung out in time it's a long process too get anywhere with it all even after being diagnosed.

19

Well I'm off to the neurologist this afternoon... I really really hope  he has answers for me.

Last night was probably the worst for the violent jolts and shakes. Felt scared, properly scared for the first time. Laying there as my whole body jolted and spasmed. It really hurts from the speed of them and the violent force with which I seem to thrash about.

So later this evening I may indulge in a little tipple dependant on what I'm  told this afternoon...

20

Hi Mark4130, best wishes for this afternoon and hope you get some answers. flo