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Worried about having early onset parkinsons.. Does it sound possible?

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KatB
Worried about having early onset parkinsons.. Does it sound possible?

Hey guys, I know you aren't medical professionals, but I need to know that I'm (probably) not crazy! I'm 24 and I've been worried for a while now that I have early onset parkinsons I get laughed out of every doctors office I have seen because "Well you can't possibly have that! You're too young!" with no tests. It's a legitimate worry for me. I have been diagnosed with Fibromyalgia, so literally I could walk into my GP's office with my arm hanging off and it would be down to Fibro cry I am however worried it is this, not Fibro.. I'll try and remember all my symptoms in this following list and describe them if possible:

  • Tremors - I get this symptom when I'm relaxed. My left hand shakes when I'm relaxed. Really shakes. It's kind of a weird sort of up and down and sometimes side - to - side motion. I've had this symptom for a few years now, but this year it has worsened (particularly in the last few months)
  • I have severe musculoskeletal pain. Fair enough, probably down to Fibro but nothing seems to ease it, ever. I have been told that with Fibro the pain comes in 'flare ups' but this is constant and they (GPs) will NOT believe me. I don't know why. I am on Oramorph and it does not kick it. Takes a tiny edge off but not much. My spine in particular is agony - both upper and lower. It feels, stiff maybe? I've been tested for arthritis and I haven't got anything like that. Nothing shows up on inflammatory tests etc. So I'm thinking, it's probably not -just- down to Fibromyalgia.
  • My speech is either slurred, mumbled, or ridiculously fast without me realising. I don't know why. I have noticed more and more when I'm on phonecalls I'm being told to talk slower, or louder. Half the time my words come out jumbled up. Like I could say 'milk' for example and it comes out 'kilm'? Figure that one out.
  • I keep getting horrendous full body convulsions? It's the only way I can describe them. It's like my body starts to shake and I twitch insanely badly and I shiver, for a few seconds and it's ridiculously uncomfortable. Side note: I have been tested for epilepsy in my teens so I doubt it's that.
  • My mouth and eyelids keeps twitching. Really badly. I have to try and move them with my hands to stop it.
  • I have unexplained blurred/double vision. I have been to an eye clinic and optician etc to be told, "Yes you have kind of bad eyesight, nothing major. Doesn't explain your double vision though. Just wear your glasses" and that is that. They won't test further. Also in addition, I always wear my glasses and my double vision is still there.
  • I'm VERY unsteady on my feet. I walk with a stick already as it helps me balance and reduces pain. However, my arms don't swing as well as they should. I noticed that these past few months they barely move when I walk. Only the hand that has my stick moves. If I were to look to my side, or behind me, or up, or down, I lose my balance and I am likely to fall (if my partner wasn't there to catch me)
  • I have falls quite often. Most recently I fell down the stairs and really bruised badly. Mostly my pride was hurt but either way, I shouldn't be having falls at my age.
  • I get seriously bad cramps. To the point for example my hand will freeze in a particular position, and to free it I have to use my other hand to twist it out of its position and I've even snapped tendons this way. I've been to minor injuries with this and was told 'Well you CANT have just had cramp!' when I have.
  • I am very slow sometimes with my movements. I struggle to do various things.
  • I have weakness in my hands and arms. I often can't open bottles of water for example. I struggle with using tin openers etc.
  • Again, this one could be down to Fibro, but I have major fatigue. I am so tired. All the time. I sleep sometimes 3 - 5 hours in the day, then 12-14 at night, and I'm still tired. It's beyond ridiculous. Sometimes though, I don't sleep at all and literally cannot switch off and I am wide awake. All night long. Which does not help the fatigue as you can imagine.
  • This one I am finding SO embarrassing, but I'll post it here for a clearer picture. Lately, I'm finding I keep getting a sudden urgency to go to the toilet for a wee. If I don't go, that's it, I am likely to wet myself. Worse however is the fact that I have bowel incontinence. I often find myself trying to reach the toilet and not making it in time and I literally cannot control it. I remember a time I used to choose if I could hold it or not. Now I simply can't. At my age, I feel totally embarrassed. It's happened out in public too. I've had to rush into the nearest shop.
  • I struggle to swallow food, a lot of the time. I really struggle. I have to have a lot of water on hand so I can swallow without choking. It's stupid.
  • ​I often drool without realising. It's embarrassing.. Not much else to say about that one.
  • I keep getting dizzy and headrushes when going from sitting to standing. My blood pressure was tested the other day for a routine thing and it was perfect. So no low blood pressure.
  • I have a really bad memory, partly down to a mental health issue that I have, but I am sure that it shouldn't be so bad that I cannot remember words, times, days, etc?

I -think- that's pretty much everything. I am just finding it so hard with GPs/Doctors. I just don't know where to turn. If you read all this, then I applaud you haha I feel like I ramble half the time.

I hope you're all having a good day.

Kat

Trev12345

I am sorry about how your feeling and pretty much can't help you.

But your last line "I -think- that's pretty much everything. I am just finding it so hard with GPs/Doctors. I just don't know where to turn." is where I am everything is being blamed on my parkinson's which I believe it's something else unrelated and got no where to turn.

Hope you get some answers.

Trev.

daffy

Hi Kat, Sorry to hear you're having such a rough time. I'm no medical expert so can't offer an opinion. But I wondered if it might be worth asking for a second opinion from another GP or neurologist. Maybe you've already done this.

Love the collie by the way. I have one too. Daffy

KatB

Thank you both for your replies. I really appreciate it.

Trev, I am very sorry that GP's don't take you seriously. I really know how it feels. I've been diagnosed with Fibromyalgia so like I said, if you go in with your head or arm hanging off, ahh it's Fibro. It's apparently the thing that causes all symptoms *rolls eyes* It's SO frustrating.. I hope you get it sorted though :)

Daffy, thank you so much. I live in a small town in Wales where there's only 2 GPS at my surgery and a few locums. My regular GP now only works 2 days a week and she generally takes me seriously but seeing her is like finding gold dust. Which is a shame. The other GP is a miserable woman who won't even take me seriously about my Fibromyalgia (even though that one has been diagnosed) work that one out. So I can guarantee she will laugh me out of her office if I tried (again) with this. I haven't sought a second opinion yet because of the reasons I said just now. That and the fact I feel like I'm being rude, or going behind the usual GP's back. I'm not sure. I worry too much haha. I'll ask to be referred to a neurologist if I can see my regular GP. She's really nice but I just rarely get to see her this past year because she's gone part time, and she is the best one at our practice so trying to get an appointment with her is nigh on impossible. Haha yeah the collie, she's lovely, she's called Faye. Such a lovely little thing. She's currently asleep in front of me. She's settled from being a totally hyper puppy to a rested old lady in 0.2 seconds haha. She's great though. Has her moments of hyper then will sleep or crash out. Unbelievably intelligent though. :D What's yours called?

Kat

daffy

Hi Kat,

Yes I know what you mean about some GP's wanting to make symptoms fit a specific diagnosis. My daughter went through the same thing some years ago in her early teens. Dr was convinced she was anorexic and just wouldn't listen to anything else we said. She wasn't and is ok now but that's not the point is it?

Wales sounds a beautiful spot to live but obviously not so good on GP accessibility.

Faye looks quite young and absolutely gorgeous. My black and white collie - Merlin - is 10 years old now. He doesn't look it but I think he is slowing down a bit which is fair enough. A couple of months ago we took on another collie pup. Cherry is a very pretty red and white girl - and she knows it! She's 5 months old now and like yours goes from flat out to sound asleep in seconds. Both dogs get on really well fortunately. D

elegant fowl

Hi Kat,

I'm sorry to hear of your troubles. Have you only been assessed by your GP(s)? It would be normal for somebody presenting with suspected Parkinson's  (or anything remotely like it) to be referred to a neurologist specialising in movement disorders. They would usually carry out a series of tests including blood tests, xrays, head & neck CT scan and more. Most of the tests are actually designed to rule out some of the many things that can cause Parkinson's like symptoms. If you get through all that and react positively to the drugs you are almost certainly a parkie.

There are documented cases of people younger than you with Parkinson's although not many so it's not impossible. It's reckoned that around 5% of people with Parkinson's are diagnosed under 40.

If you haven't been referred to a specialist you should be asking why not.

Good Luck

Elegant Fowl

Island Mike

Hi Kat

You’re certainly going through it at the moment. Many of your symptoms don’t really fit Parkinson’s, but it does sound as though you have some kind of neurological condition. I agree with Elegant Fowl, you must insist on a referral to a neurologist for a proper assessment. Don’t take no for an answer. You know yourself that these symptoms aren’t the fibromyalgia.

Can I ask if you are on any medication? 

Mike

KatB

Hi all. Thank you for your replies. Im sorry its taken a while to reply, ive not been well and busy with it coming up to christmas.

I have only seen my GP who doesnt take me seriously, so i may ask for a 2nd opinion and a referral to neurologist.

since my original post i have begun to stutter now, really badly. Every day im struggling to get words out and struggling to form words even though i know what i want to say. Its really embarassing. I am really concerned but because ive been diagnosed with fibro no one professional cares and i KNOW it cant just be that. My tremors are worsening now too.

To answer the question regarding medication, im on mental health meds, aripiprazole, have been for many years, i take pain meds (zapain & sometimes oramorph), omeprazole for heartburn, metformin for lady problems, and amitryptaline for pain/help to sleep. I know theres a lot of meds but even though i explain to my dr that zapain and oramorph do not really touch the pain they refuse to believe me and think i am a drug pusher - which im not i just cant bear this pain. I know the pain isnt just fibro, as fibro comes in flare ups and this has been permanent for 2 or 3 years now easily.

I feel like crying. These symptoms are getting worse and until i walk into my GPs office with my head hanging off, they will not take me seriously.

I just wanted to thank everyone for their replies and i am sorry for not replying sooner.

I was wondering if any of you know of a good diary i could buy online that will track symptoms so drs will possibly take me more seriously? Thank you in advance.

Kat