Hi @Clax,
No problem at all and I definitely think it’s good that you’re getting two opinions on this.
All the best.
Many thanks,
Reah
hi Clax just wondering how you are getting on hope you,re ok passed my memory test yesterday now hoping assessment on tues. goes same
Hi Peter, I hope you’re well - great news on the memory test! Did the assessment go ok? I’ve finally been given an appointment with a specialist on April 4th, so much earlier than the August date I was originally given! Will let you know how it goes.
hiClax good news on you,re appointment hopefully you,ll get some answers my assessment is next tues midday to be honest dreading it will let you know how it goes
Good luck Peter, will be thinking of you. Let us know how it goes.
Thanks i will let you know
I finally received a write up from the Neurologist I saw a couple of weeks ago today. He concludes that I have reduced arm swing on the right side with some bradykinesia in the right arm, as well as an intermittent tremor that is visible both at rest and posturally. He agreed that I need to see a movement disorder specialist who can ‘confirm the situation.’ It feels like baby steps, but finally feel like I’m getting closer to an answer.
hi glad you seem to be getting somewhere i know nobody wants to hear they have pd. but for me i would rather find out early enough to start treatment whatever it takes time to adjust just keep fighting had my 55min grilling yesterday wiped out will know in4to5 wks
hi clax hope you,re keeping ok no news yet on assessment or monitor legs not been great so hope it wont be long thank god cbd still working
Pete
Hi Clax,
I have only just seen you post and wanted to send you my hope in you getting some definitive answers soon. I am 31 and have been going through almost identical to your experiences. i don’t have any other underlying conditions though.
I can only recommend what others have said in getting a specialist and I am with Kings London, still awaiting an official diagnosis after 2 years (only been referenced as having a parkinsonism and APT…basically the grey area!). At our ages they seem to want to observe and test continually, but are very slow to give you an definite answer, also they can be very bad at explaining why.
I just want you to know you’re not alone and there are others your age range going through this and I am truly aware to the stress and sometimes feeling of insanity these symptoms can seem without a name.
Would be nice to chat more as I have had real difficulty finding others near my age that are going through the more late stages of diagnosis / tests.
Best Wishes,
Jim
Hi Peter, I hope you’re OK. Thanks for checking in - I saw a movement disorder specialist last week who has referred me to another Neurologist. Seeing a YPD specialist on Monday, so hoping they’ll be able to help. How are you? Have you heard back about your assessment yet? Sending you all my best wishes x
hi clax glad things are moving for you not heard from assessment or monitor yet had a message from tommy after telling him about cbd cheer yourself up look at insomnia topic he had mam and me laughing
Pete x
Hi Jim - lovely to meet you. Thank you for getting in touch. I’m so sorry to hear you’re still waiting on a diagnosis after 2 years. I can fully appreciate the relentlessness of being tested and observed time and time again. I first went to my GP with symptoms of joint stiffness in 2015 and they told me to ‘go home and have a cup of tea’. Now it’s got to a point where I can no longer clearly write my name. I’ve just been referred to the 6th and 7th neurologists to deal with my case. Both of them are in specialist centres, so fingers crossed they can provide more help.
I can fully relate to what you said about the stress and feeling of insanity. It’s been a very tiring, challenging and difficult process. As you mentioned, one element I’ve found hardest is the poor explanations as to why they are unable to give a definite answer. It’s all felt very vague and I feel like I’m just getting passed on from person to person. Are you still experiencing this 2 years on? Because of my age, people have pointed out my tremor and ‘funny walk’. It’s become a bit of a joke, but it’s difficult to keep the pretence up when you know the reality is completely changing your quality of life but you don’t have an answer to give. What type of treatment/ testing/ appointments are you receiving right now? Have you had a DATscan? Thank you once again for reaching out. I’d love to hear more of your story. x
Hi Clax, I have had symptoms for about 3 years and a solid left hand resting tremor to go along with the fatigue and REM sleep disorder ( I used to be a dead sleeper). My journey has been pretty bad through the NHS, but have my next Neuro appointment next week. I’ve had 2 DATScans, the last was a more specific type that measures a number of things and they even have me on gene testing. I also get to look forward to a sleep clinic…still waiting a year later.
Also recently I’ve had a couple of freezing in my left shoulder and left leg (along with my big toe moving now in rest), so will be a full on catch-up for my Neurologist! Do you get any crawling sensations in your feet? Just curious as this is new and been experiencing since last November.
I know fully what you mean and my girlfriend needs me to calm her sometimes as she hates that my doctor’s don’t really explain/ answer why this is all happening, especially as she sees it 24/7.
Fully understand how you feel as seems like it’s neverending. I have really bad moments where I lash out due to feeling so rough and also when my symptoms are really bad.
I was on some muscle relaxants last year, but had to come off as I couldn’t even open a door! They wanted to trial me on some drug, but never got it. Also I actually turned down my original doctor’s suggestion to put me on PD meds as I wanted more testing. Also had a similar to your experience and am told it can’t be that bad and “you’re young, Parkinsons is older people” (quote from my doctor’s).
They are now taking it seriously and hoping to have answers next week as like you, the reality of living with some of these symptoms is soul crushing.
If you ever need to talk, you can always give me a shout as nice to meet someone similar, going through all this.
Jim
Thanks Jim. I can relate to so much of what you’ve said. It’s been such a drawn out process and it’s so hard when you’ve waited months to see someone to not get the answers you’ve been waiting for. I really hope your appointment this week goes well and you get a step closer to a solid diagnosis.
P.s - I get crawling sensations in my foot, so that’s interesting to hear you have them too.
Hi Clax
I was referred to a Neurologist 2 years ago and was given a walk up and down corridor for 2minutes and told to return in 6 months also and I quote (it would be almost better if it was PD ,glad I had a witness there)
Anyway after more than 2years and trials of several drugs including dopamine. I am still awaiting a definitive DX.
I lost confidence in the neuro within the first visit due to the obscure comments made in the first few minutes… Tommy
1 Like
Hi Tommy - thanks for sharing, I can relate to your story. I’m so sorry to hear you’re still without a diagnosis. Are you seeing your neuro regularly or they keeping the appointment gaps quite large?
Hi Clax
Sorry I disappeared for a while I see my nuero every six months at the moment meantime I’ll just keep falling down stairs and stuff till he makes his mind up
Did that a couple of days ago straight over the child gate and down the stairs I only hurt my shoulder not even a bruise to show for it .
My wife just thought EastEnders had finished early…duff. duff duff.
Hello @Clax and @peter_corcoran, I who have read your posts with interest as I have fibromyalgia. My GP referred me to Neurology due to tremor and other motor symptoms. I saw neurologist today who after less than ten minutes declared all my symptoms were down to Fibromyalgia. The only things he got me to do was touching his finger then my nose, and opening and shutting my hands. I will be speaking to the helpline hee on Monday, but curious if you had similar experiences.
Hi Roro as my neurologist said you can have more than one problem be careful as fibro myalgia makes it more complicated to deal with pd both to diagnose and treat so make sure you get right diagnoses feel free to keep in touch all the best
Petec