Possible eopd

Potentially posted in wrong but so posting here sorry :cry:

Hello please bare with me have dyslexia and want to ask/share my story so far.

I am 36 year old and not spoke to my wife regarding potential for this. As it’s a friend who has EOPD who has pointed out to me a few things they are 45 for what it worth

I have been going in and out of doctors for a while and on Friday we looking at possible moving to neurologist but due to doctor looking at other stuff not really spoke about potential eopd but my nurse I goto to check my blood pressure has assured me I should.

So a lot of my problems/symptoms are in no particular order of when they started

  1. Minimum left arm swing when walking ( I have quite poor gait issues in that I feel I lean forward with head and then kinda deviate to the right) a friend funnily enough with PD pointed this out to me.
  2. Numbeness/tingling in my fingers all of them mainly when standing to long I think and possible cold weather
  3. My joints majority of them sore some even sore to touch with a bit of pressure had a mri of right knee yesterday. All of them click so much to point sometimes it sore especially knees when standing up. My back goes into a spasm at shoulder blades especially when I lie on stomach
  4. I do smoke but don’t drink and my blood pressure always high on average been 148/111. bpm average from normal to quite high 70 to 120 I got put on beta blockers a month ago no change as of yet will speak with doctor on Friday
  5. Silly wee things I go through on and off ED not to much of a concern yet :wink: lol went through a crazy gambiling spell slowing down a bit
  6. Tremor shaking/potential pill rolling.
    My tremor has always been pretty bad in left hand not always visible however at funerals for example they are awful to point even my head visible at shaking this is recently new I think. I know pill rolling a thing due to my friend however mines not index and thumb more middle and thumb I think well 99% sure. Even when eating soup with both hands closer I get to mouth harder it gets to put majority into mouth
  7. Potential night sweats wake up and pillow pretty wet tbf but other parts of bed ain’t
  8. Recently first noticed beginning of February developed alopecia not diagnosed yet waiting on dermatologist but it’s 100% alopecia even doctor has said it but says need dermatologist to confirm it and I know that’s an autoimmune thing and may potentially be related
  9. Last is got diagnosed with ADHD about a year ago and know it’s similar when going with brain dopamine ect and ever so slightly thinking that they have misdiagnosed or I have adhd along with potentially eopd and it’s maybe stopped them looking god knows

Anyway has anyone got similar things b4 diagnosis or similar symptoms did u have to prompt gp for neurologist referral ect I have prob missed a few symptoms tbf but dyslexic is making hard for me have tried my best tho predictive text helps a lot haha

Wee update on myself prob wrong place

Doctor today has referred me to a neurologist the doctor think my problems with left arm ect more muscle bone related rather than brain related but in case he wrong he is referring me to neurologist

he had me do few things lie flat and lift left leg could barley get off bed and lift left arm out and up kinda failed sadly my shaking was getting much worse as I was struggling with the feeling of my body failing me even was in tears but yea they think it more bone/muscle related than brain but now just waiting game for neurologist and have the x ray of shoulder for gp mri result for right knee ain’t in but he thinks my left arm ain’t swinging bcoz of a bone/muscle problem

Even threw my legs about said there was stiffness and rigidity and majority of my symptoms ain’t related to Parkinson’s but again could be wrong the joys I guess will update this once I get to neruologist and had other things marked off or confirmed

One thing I find strange if he has referred me I am guessing they have small thinking it could be neurological as won’t just refer for sake of it surely ?

@Gm You may have more than one thing going on. You certainly have some of the symptoms of Parkinsonism. I was sent for a brain MRI and a DatScan. Your neurologist may also order those for you.

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@Douglas How long did u have to wait for neurologist from referral from gp if u had one that is may have been private? I am getting depressed because I feel my body is failing me and can’t find the answer :frowning: obv neurologist will be interesting don’t even know what to expect and hopefully conditions get better b4 then but obviously worried they don’t or get worse.

It only took about 6 weeks from referral to seeing the neurologist on the NHS

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@Douglas Wow how long ago was that sorry and am guessing you were quite bad ? I know a lot has to do with your area as well I believe

@Gm It was 14 years ago and I was in the very early stages of PD. I think that it helped that I asked to be referred to the National Hospital for Neurology and Neurosurgery which only deals with neuro problems. A further example of using hospitals like that happened to me recently. I was referred to our local hospital for an eye operation. I was in for a long wait. I asked my GP to make another referral to Moorfields Eye Hospital in London. When he did that, I had a call from Moorfields about 2 weeks later and had my pre-op call with a nurse a week later. My op is scheduled for early May!!

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Good afternoon Gm … I am so sorry that you are having all these health issues at such an early age. My health turned for the worse when I was 59 & I am now 70.
I have Atypical Parkinson’s, Prostate Cancer, an A-Fib heart condition, Neuropathy & Arthritis. I also have high blood pressure. I am on a lot of medication. I take 12 pills a day.

In my youth I was a heavy drinker. I stopped when I was in my late 30’s & am now more or less teetotal. I have also been a gambler from my youth to now really.

I don’t smoke & never have as loved ones were heavy smokers & I watched it kill them.

I have always been slim & played sport obsessively. I have tended to eat what I want but now eat sensibly. No red meat, no junk food etc.

Are you overweight ? Do you exercise ? Do you have a job ?

If I were you I’d use this health scare as a wake up call & give up smoking & live your life as healthily as you can.

Lecture over … I’m guessing you will totally ignore what I have written. But it was worth trying.

Best of luck

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Good luck with your op @Douglas

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@Steve2 Not ignoring at all all advice is taken in trust me. I am considering the smoking bit I am slim ish build I am 6,2 and weigh 180lbs did weigh 210lbs a year ago was active I am out every Saturday to watch my team play. eat pretty well and ad say still active but yes have had a scare and could get worse but hoping for better or at worse case scenario stays same. Oh and don’t work anymore due to a lot of problems over years and obv now becoming pretty bad. Edit to add couple things I did goto gym up to few years ago due to it causing a lot of problems in end loved it to :frowning: so not much excercise apart from walking as much as I can my wife has stopped work tho as I need a bit extra care and she drives which helps a bit. Also sorry to hear about yourself regarding cancer ect been through that recently with a loved one can’t imagine what u going through but know how it was for my family member :frowning:

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Thanks for the extra info Gm. Pleased you lost the 30LB’s. 180LB is a good weight for your height.

Clearly you need more of a meaning to your life, you must not let this illness define who you are. Do you get bored ? Is this illness filling a gap in your life ?

Why not do some charity work like volunteering at a dog rescue center & walking the dogs for example … I think animals are good therapy, they don’t judge us.

You must do something with your life. Don’t leave this life with regrets. You will be surprised how quickly life passes by.

Best of luck.

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So wee update since few things been getting sorted again dyslexic so will try my best with punctuationect and try keep short rather than long haha.

After some X-rays and mris of dif parts of body all came back clear.

Physio has given me a crutch after assessment and said it don’t seem muscle and bone related and defo looks like neurological/nerve related my problems from.

My gp has assured me after speaking to neurologist that once we rule everything out I will be moved on to neurologist asap

All blood tests are fine bar one thing b12 and folate extremely low which can account for a lot of the problems I am facing I have been taking tablets ect once sorted if no improvement after re bloods done ect that will be pretty much last step b4 neurologist

Gp agrees now it’s unlikely bone and muscle related and defo neurological/nerve related

I am now struggling to stand up tall my knees feel they want to give way constant moving in and out of locking position to enable standing tall. Hence crutch really

I am hoping everything is sorted with b12 and folate thing and get all clear only been on them for few weeks will know answers hopefully b4 26th of June I goto Egypt for two weeks so doctor hoping to have this confirmed by then.

But yes I’ll update when I know once sorted be it potential Parkinson’s or not as been an interesting year that’s for sure and obviously symptoms getting worse ect. Again I know I ain’t got Parkinson’s but fact dr said a lot of problems we’re definitely Parkinson’s like bar odd occasions ones hence referral to neurologist but odds seem to be increasing that I have but obviously the very low b12 folate thing could be a big find so fingers crossed