I’m 27 and really worried any help please


#1

Hi
I’m sorry if this is long for about a year I’ve been having severe tremors breaking a lot of things my memory has been terrible ,leaving my car door open my boot open losing things putting things in the fridge that shouldn’t be forgetting so much my five year old often says I need to see a dr as he is worried I don’t remember anything my tremors are super strong at rest and then even stronger when moving things often drop my keys when trying to get it in a door I finally went to the dr after a nurse at a hospital apointment cought me on a bad day and my whole body lips legs hands arms were shaking and she told me this isn’t normal
Went to the dr and we had my thyroid checked came back she said essential tremors I said fine I didn’t mention my memory I thought it was unrelated . When I went back she said this is unusual for a 27 year old and I said no I’m 28 she said no your not I said I 100 percent am . Even rang my mum and she thought I was joking i really was insistent with my dr when I next went back I apologised and said she was right she looked at me concerned and said has this happened before ? And I went on to list all the weird crap I’ve been doing . She said she’s sorry but she doesn’t think this is essential tremors I so what is it and she said she is referring me to a neurologist she doesn’t want to scare me by asked me if I had heard of Parkinson’s I said yes my grandad had it how ever died of something unrelated I asked what this has to do with what we are talking about . She told me not to worry that she has prescribed me pronolol to take I in the mean time To help
This was only a week ago and my letter has come through for The 14th August. How can I have Parkinson’s at my age ? I haven’t mentioned it to anyone because I don’t know what to say I’ve been so embarrassed recently repeating conversations not knowing we have discussed it One hospital apointment my dr asked if I had been drinking (8.30am!!) because she said I was slurring my words I’m usually very articulate but I’m struggling to form the sentences I want to . I’ve just graduated with a first class degree and everything has seemed to crash but get worse suddenly I noticed symptoms a year ago but last few months it’s been intense my gp watched as my hand and body even lips were shaking at rest and she said this isn’t common with essential tremors but because of my age she will assume it’s thqt then she changes her tune in the last appointments and she seems really concerned I don’t know what I’m asking but please tell me your opinion I kno your not doctors but people experiencing similar


#2

Hi Glitter,

Sorry to hear about what you are going through. We’re sure that some of the forum members will reply to your post, but you may also find it helpful to speak to a Parkinson’s adviser. Please feel free to call our Helpline on 0808 800 0303 and they will be happy to talk about this with you.

We’ll also let the Parkinson’s UK team know about your concerns and they will respond to you as soon as possible.

Best wishes,
Edwina
Moderation Team


#3

Hi Glitter,
Sorry to hear what you are going through and from my own experience you’re not alone. I’m 56 being dx on 12th December 2016, so still relatively new to this. The one piece of advice I would give is to write down what you want to say and get someone who knows you well, your partner, your Mum to go to the appointment with you. 2 reasons for this is one you will probably forget to mention a symptom or issue which is concerning you. The second is you are most probably likely to not take in or recall everything (certainly true in my case) what the neuroligist said.

Again only from my point of view when I finally got my dx it was in a strange way a kind of relief as I now knew what it was. There is no overnight miracle cure I’m sorry to say, however the meds help. But the biggest help and support has been my Wife, family & friends who have all been very supportive and encouraging me to keep trying and to do more when I can.

Slurring words and not being able to walk in a straight line are my biggest frustration and I’m still working on this.

Anyway I wish you well for your appointment on the 14th August and do remember that the forum is hear to offer support as is PUK whose support line I can recommend.

Best wishes


#4

Thanks both for yoie responxw ita not goim to be lomg as Im om a bad day so fustrated no partner split from x husbans three year ago ane cant go with mum as jhavent told her themorw i focus ro type thw worsw shakws are


#5

Omg nothing i say is making semxe im so angry at myself


#6

Hi Glitter you really need to get a dat scan and if you can, t access a pd nurse then I strongly advise you ring helpline no. as no 2 people get same symptoms you need to speak to a qualified person I l like others on forum will help if we can take care
Pete


#7

Hey don’t worry I feel I am in good hands and I’m seeing neurologist 14th August so they will do all that . I’m mainly just still such a mess in my brain right now so just needed to get it out . Thanks for responding. I’m sure it will figure it self out I suppose


#8

I’ve got the talking to someone qualified covered and will speak to them on the 14 I’ve started writing things down but the hard part is needing to write things I’ve forgotten well sometimes I haven’t realised I’ve forgotten something but I have lol but il do my best to keep a note of things . I’m feeling very alone right now . I tried to ring helpline yesterday as couldn’t find opening times by the time my kids were asleep they were closed but the phone line said the times so will try next week


#9

Hi @Glitter,

A very warm welcome to the forum.

I see you’ve received a lot of supportive advice from our forum community which is great to see. Just to echo Edwina’s comment, please try giving our helpline another call - you can call them from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email hello@parkinsons.org.uk.

I appreciate that this may be a scary time for you, but you are not alone and we are here to help you. We have a really helpful and informative website that I’d recommend you check out , particularly this page here - https://www.parkinsons.org.uk/information-and-support/do-i-have-parkinsons

Wishing you all the best with your appointment on 14 August and do feel free to continue using the forum for more help and support.

Best wishes,
Reah - Forum Community


#10

Dear Glitter,

I’ve been thinking about your post all day. I am young onset and had a small child at the time of diagnosis.

The two things that struck me about your post is how your medical practitioner doesn’t seem to see that you are in a state of crisis. Someone said you must tell your mum or a close friend. I do agree with this. You need support now for the safety of yourself and your child. Neurological distress doesn’t present like a broken limb, but is just as critical.

Be comforted in knowing Not all neuro roads lead to Parkinson’s even if your grandad had it. And even if you do have young Onset, there’s a lot you can do to lower symptoms feel normal again.

Your symptoms, however, seem very extreme for young onset, which is usually slower progressing, especially in women.

If there is any way someone can help you to get support more quickly…I hope you will take advantage of that. One thing about neurological distress is that it’s also harder for us to think clearly. And we close in, feel like a burden. But Support maybe vital at this time for you to get well.

If you’ve already gotten help, feel free to ignore and erase this message. I’m just worried about you…as I’m sure are all the others on this line, including the moderators.

Warmly,
Chrystal


#11

Hi Glitter,
Try not to worry too much. I know that can’t be easy though. Wait until you see the neurologist. And please do take someone with you, who can at least remind you of what was said. So easy to forget in stressful situations.
Hope knowing the diagnosis will bring you some relief. So take care.
Mike


#12

Thanks everyone good news it’s neither Parkinson’s or essential tremors she doesn’t know what it is though so we will find out after more tests. I’m not worried now though thanks everyone . I did go on my own but I’m glad I didn’t mention it to my mum seen as she would have just been worried along with me 6/8 weeks before there’s appointments for the other stuff she wants me to have done so I’m just going to forget about it and deal with it when it comes . Sorry I never replied I was just so busy but appreciate the support I’m still taking the proponal so we will see what happens . I wish you all the best and thank you again ! Your all so kind

Forgot to say she did all these things like balance and some vibrating metal thing and asked lots of questions I felt really comfortable in the end once I’d gotten over the worry and I fully trust that she will get to the bottom of it