Only 33 and confused

About Parkinson's and health Newly diagnosed
1

Hi all

I have recently been told by my Neuro that i have the early signs of PD. I will try and give as much details as possible here and would like as many opinions and advice as possible.

The more i look at it i think it started back in 2009, when i was 27. I had tremor, wekness and 'pins and needles' in my left hand/arm. From that i was referred and had muscles/nerve conductive tests carried out. They came to the conclusion i had carpol tunnel syndrome. I had the operation for this, and even though my hand never gained its 'normal' use back, i lived with it.

Since then i get tremors in my hand when i yawn/sneeze?. Anyways back in Oct '13 i noticed my walking had changed, i was struggling to lift my feet, again left hand side. It got that bad I went to my GP, who referred me to Neuro, from that i had my first MRI scan. It came back all clear, so it was put down to stress (I have a business and had separated from my wife).

So i plodded on thinking it would improve, then in June '14 i went back to my GP about another issue, he brought up my walking and said he wasnt happy with the 'stress' diagnose. I was referred again and had

another MRI, Nerve and muscle conductive test, Lumbar punchture and bloods.

ALL came back clear (still awaiting bloods)

Since Dec '14, i have progressively got worse, I now walk with a crutch as i have no balance and minimum movement in legs, i have severe rigidity in my left hand side. In have had several falls resulting in broken ribs, smashed elbows, badly cut face (chin needed glued) etc etc.

Now I am getting severe pain behind my left knee, left elbow, left shoulder across back of neck and into right shoulder. I was at my GP on Wednesday who cant give me anything until he speaks to my Neuro (whos on holiday). My Neuro has told me i will start meds once i have had my DaTscan, but have been waiting 7 weeks and have been told i need to wait another 6.

I am a strong man, but this is physically and mentally taking its toll on me.

 

I know it is a long read, but your comments are welcome.

2

Hi John,

Firstly I apologies that I can't offer much advice, as it's all fairly new for me too. However, there are lots of helpful people on this forum so you've come to a good place.

I thought you might appreciate a reply from someone of a similar age - I am 34 (diagnosed with PD at 33). I know how stressful it is - although it was so difficult to hear the news that I had Parkinson's, in some ways it was scarier beforehand knowing that something was really wrong but no one being able to tell me what it was or even necessarily taking it seriously. My issues are with my right arm and hand, and were originally thought to be a trapped nerve by my previous (and now apparently not great) GP. My dx was MRI (clear), bloods (clear), and DaTscan ('reduced uptake' in the left bit), and that all happened in close proximity to each other. Although I had to wait a long time to see a Neuro in the first place, the DaTscan happened within 5 weeks - it does sound like it'd be worth pushing them for an earlier appointment or to fill a cancellation?

Try and stay strong and positive - it sounds like you've has a tough time of it, and I hope you get some help and answers really soon.

Best,

T

3

Hello John . Sorry to hear you have been feeling so unwell . Your symptoms do sound like pd . It is a long time to wait for the DaTscan when you are having these symptoms and falling  I am not surprised you feel it is taking its toll  . 

Some people have begun meds before having a scan . Some people have never had a scan  . Indeed it is something relatively new . Many neurologists base their diagnosis on symptoms and response to meds . It sounds to me that you need to be started on something now . Could your gp make you an urgent appt with neuro for as soon as he gets back or with another member of the team . 

It could well be young onset. There are many people on here your age  . I was diagnosed last year . When I look back I've probably had symptoms since 40 at least . I'm 45 . It seemed to take ages to get a diagnosis . My GP was apologetic . I think he felt bad because he didn't think of it. He said he had not had a patient as young as me ! 

I would go back and see your GP and push for more help . When you do start on meds you have to build up slowly and it can take a while to see effect  . In view of your symptoms I think you should be taking something now . I wish I had been a bit more pushy and had some treatment earlier  . Best wishes let us know how you get on  

4

Thanks for your input, both of you.

This is the hardest thing i have had to deal with in my short life, and I have had a tough 33 years. I agree i should be on some sort of meds, my GP wanted to start me on Baclofen, to reduce my muscle spasms, but cant as it is not to be used when there is the possibility of PD.

Why would my Neuro tell me he was starting me on meds straight after my DaTscan, would the meds affect the results?

Its getting to the stage that its affecting family life, im constantly tired, sore and crabit, which leads to me taking it out on my kids and new partner. I know they know its not usually the way I am, but I just want to curl into a wee ball and cry sometimes. My partner is absolutely brilliant, only met in September and she doesnt know me being any different movement wise, but her patience will run out with my moods.

Currently I take 8 paracetomal and 8 neurofen a day to try and ease the pain, but even that doesnt hekl me.

 

Thanks

 

5

 

Hi John

When i first had a tremor i was prob in my late 20's but i ignored it for yrs well till i was 43, i just got on with that tremor at work till i could ignore it no more, i've always had aches and pains but had never been one too go too the docs for 15 + yrs.

i went because my hands were numb and they ached with my arms and legs, the doc thought 'carpal' at first as you've mentioned, the shake as i told him it was just a shake and i'd always ignored it.

he also asked 'how's your mood'?? so i was sent on one of those stress & anxiety course's as well, there was lots of people there for the reasons of the course, but what they were saying didn't really fit in with how i was feeling about being ill and being ill was causing stress, not touched on.

that ^ might be beneficial too you??, it was 6 one hour sessions and councilling if you wanted it.

lots of blood tests followed including one for wilsons disease , work finished, i was finished as far as work went i was incapable.

then eventually after the gp plodding along i was sent too a neuro, after examination the neuro sat me down and said lots of problems but at the core prob 'parkinsons', nerve conduction tests ruled out 'carpal' a month or two wait and then a m.r.i which showed nothing other than some minor degeneration ''tough life at work''.

back again too neuro then 'dat scan', then 7 weeks wait after that the results ~reduced patchy  uptake on both sphere's of my brain, All in all a year in process too arrive at Parkinsons diagnosis. and then the start of medication although i still have things too be looked at, gait,walking, physio, memory tests ect.

It's not un normal too be stressed or crabby, at work i found my self being stressed out by anything i used too be so laid back, one of the ladies said i'd 'lost my sparkle' and i had, i could not concentrate anymore and to be honest i didn't know what i was doing half the time i had become a danger  and stranger too myself and others in a potentially dangerous work environment, i was a strong man once, but physically and mentally i'd become weak and dead tired when i used too be full of energy in and out of work.

 

 

6

Hi John I think it depends on the neuro when they start you on meds . Some want to wait until after the scan some start you on them before , some don't request a scan and go on clinical symptoms to diagnose . Some pwp don't want to start straightaway either and their symptoms may be mild . I knew I needed something straightaway as I was quite symptomatic . I had many symptoms like yourself . I was probably a nightmare to live with  ! I recall snapping at the kids and my husband too . I felt devastated when diagnosed and was so tearful and wanted to scream . In fact I did one day and then I felt I was losing the plot . My consultant said its like a grieving process . I remember saying to my husband will I feel happy again ? And I do ! Things will get better John hang on in there . Now I am on the meds I am starting to feel better ..I am only on a small dose and building up slowly ( increase next week after four weeks at same dose ) we had a lovely weekend away last weekend just the two of us and today I have felt the best I have in months and done lots of jobs around house and been to hairdressers which has made me feel better too . Lots of pwp on here say when they get the right meds their symptoms will get under control . Some say they practically disappear . 

I have had a lot of pain . Like yourself nothing seemed to touch it . I now think that was because I needed specific parkinsons meds . The pain is better and I am only on small dose at moment . 

Your partner sounds very supportive like my husband . If the boot was on the other foot we would be the same . Best wishes and remember you are not alone . 

7

Again thanks for your comments.

I have spoken to others who have PD or know people who have, they tell me my symptoms are as bad as it gets, which i try to use positively as it can only get better. I am actually getting my left leg in a splint soon as my foot drop is so severe.I find it so hard to get off a chair, or even out of bed. My physio said to me last week that an 80 year old has better hips and movement than me. The pain is a nightmare, but to be honest its the lack of movement that annoys me so much. I have 3 kids of my own (10,7,4) and my partner has two (5 and 1), and i cant do anything with them.

I used to coach kids football and obviously had to give that up too. My speech is awful, its all slurred. Until it was stated that it is highly likely to be PD, people used to think i was drunk all the time....the funny walking and the slurred speach. I was actually put into the back of a police car one night as they thought i was 'worse for wear'...

It really is amazing what a difference having the crutch is, people look and treat you differently. I really don't want to use it every day but i feel like its my best friend tbh, as people dont judge, and when people don't judge i don't get anxious about what they think (if you understand that)

8

I can relate to what you are saying about the lack of movement being so frustrating  . It must be exceptionally hard when you have young children like yours . I have found it difficult with my daughter who is twelve as I have not been able to do much with her at times as I haven't felt well . I have been trying to work but when I get home I am exhausted and just want to go to sleep   . I feel I've neglected her at times . 

My speech was slurred too and I couldn't express myself. I also kept saying the wrong words or getting them back to front  . That's gone now . 

I hope you get some more help soon John . Hope you start meds soon and can begin doing the things you enjoyed again . 

9

Hi John

I sympathise with you, I am 34 and have recently been diagnosed, thankfully my GP was on the ball and referred me to a neuro pretty quickly.  Neuro was amazing and said that she thought Parkinson's as soon as I entered her office due to not swinging my left arm at all when I walk, the quiet voice and the very noticeable resting tremor, which although is worse when resting, is noticeable when I am particularly tired (often, single mum to a 3 year old and I work full time shifts).  At the moment I have chosen to not take meds as I think my fear of the possible side effects is out weighing the inconvenience of the tremors and discomfort.   

I don't know if it is a possibility for you but I have found that using a Wii fit seems to really help my symptoms, - although they are worse for about 30 min's straight after exercise.   I work as a police dispatcher which is generally a busy and stressful role, my symptoms seem to ease when I am busy at work and focused on something, but are getting progressively more noticeable and problematic during down times.

I too have a new partner, we met in September, he has been very supportive and understanding, but I know he must have had doubts and concerned about what the future will hold if he stays with me. Its a tough thought to deal with.  I have found that dealing with reactions from friends and family perhaps even more difficult than dealing with my own feelings towards pd.

10

Thanks All

I think, being honest my symptoms are at a peak just now, the severe lack of movement and muscle pain is unreal. I am being told that my Neuro and GP have been discussing putting me on PD meds next week (got an appointment on Monday). Something really has to be done as I havent worked since around June/July and its really starting to take its toll mentally.

I have noticed more often, even since i first posted on here that I am becoming more emotional about it too. I find myself breaking down at times, esp when im at home on my own, as i have more time to think about it all.

I have had two falls over the last week, one outside my own flat, and one in the local town centre (very embarrassing).  My left foot is dragging so much they are talking about 'splinting' it. I am currently going through footwear at around a new pair every 6-8 weeks as the soles are wearing away.

As for exercise, i cant really do much tbh, i stretch off 3-4 times a day but i have absolutely no balance at all without my crutch and my whole left hand side is knackered. My strength is disappearing fast, i struggled to open a tin of soup last night, using the pull-ring.

My Phyiso is stuck as well, as regardless what i do my whole body goes back to the tight rigidity ways straight after stretching, I have tried my bike, which is fine when moving, but when i stop at junctions etc, i fall off lol. ( I need to laugh at it or i will cry). I would go to my local gym, but its getting to the stage that every penny is a prisoner now and cant really afford it.

I really feel im in a no win situation, which is hard for me say/accept.

11
Your be surprised how better you will feel when on some pd meds keep us updated
12

Hi John glad you've got an appt Monday . Let us know how you get on . I think you're right you need to start something now as it is affecting your life so much . It would be different if symptoms were mild and you had decided to delay because of it but that is not the case and it wasn't for me either . It's not surprising you feel emotional . It's a response to what is happening to you and a symptom of the PD too . I felt like everything was being taken away from me and I wasn't in control of anything . It's frustrating and so upsetting . Hang on in there not long until mon . 

13

Wishing you all the best John, don't think that you have to do this alone, there is massive support if you look for it and people on here are so helpful. 

Hope you find some improvement soon.

14

Hi john,

I'm really shocked they are making you wait before doing anything or giving you anything, it seems to me that it is pd, my symptoms started when I was 16, I was constantly up and down the doctors because I couldn't walk properly, I dragged left leg and scuffed the outer side of my foot, wearing down my shoes at the rate of knots like you, when my girls were little i would put my shoes under the pushchair and walk barefoot as it was easier than walking with shoes on.

They finally diagnosed me at 26, I'm now 35, is certainly been an incredibly tough 18 years for new, esp as I was absolutely fine throughout school, very fit and sporty, but when I left school things progressed pretty quickly and I found that walking was supposed such a huge challenge.

Your story has saddened me because it reminds me of mine and the amount of time it took to get any answers, I'm really sorry to hear you've had SO many falls, that really isn't good.

I really hope you get put on some meds soon, hang in there, think positive and know you are not alone, feel free to message me any time , take care 

Tracey x

15

Having PD is often made more difficult in finding a suitable doctor.Often it can be a long process but if you persevere you will be more than satisfied.Do not ignore your gut feeling.PD people have a unique perception of our outer reality.

Happy Easter all.

16

Well im back at my GP today at 12:10, need to get something for the pain, im going through 8 paracetamol and 8 Ipbrufen a day along with my Madopar, i cant continue with this, so only is the pain awful but its the cost of the painkillers, why should i have to buy them when i can/should get free on the NHS.

I have seen no difference being on the Madopar, i know its only been a few weeks, but there has been no change at all.

To add to my woes, and its not PD related, but a few weeks back i found a 'lump' in my testie too so getting results for that today too, it just never rains on my it pours down at a great speed..

 

17

Well im back from my GP, my dose of Madopar has been increased to 100mg/25 mg, 3 times a day. He has also given me Co-codamol 15/500mg tablets for the pain. Heres hoping they help.

As for the non PD issue thankfully its only an issue with a vein, and not the big C.....

18

Aww John, you've certainly had a lot to think about lately, really hope the increase in meds helps with the pain. Thank goodness the unrelated pd problem isn't another major worry. Thinking of you xx

19

Hi John,

You never get your PD meds free but look into a pre payment card you can do it by direct debit around £11.00 per month if I did not have one my meds would cost £82.00 per month. Then everything you can get on a prescription is covered.

 

BB x

20

bb

i get my meds free ask gp for FP92A PRESCRIPTION EXCEMPTION FORM. QUOTE  WORDS

WHEN FILLIING FORM IN ( A CONTINUING PHYSICAL DISABILITY PREVENTS YOU FROM LEAVING HOME)