I think it’s a good idea for you to keep a diary to help GP/specialists get a full picture of your symptoms.
Unfortunately, it’s a little difficult to advise much more as you’ve already seen a neurologist recently. Your GP is probably right in saying the neurologist is unlikely to you see you again so soon, but you could ask for the GP to refer you elsewhere for a second opinion. This is very much dependent on availability of services in your area though (there might not be another neurology specialist). There’s more information on asking for a second opinion on the NHS website here, https://www.nhs.uk/chq/pages/910.aspx
Sorry to read about your experience at your Neurolgy Appointment.
I wish the Doctors and medical staff could explain what they are doing and why, they experience these examinations regularly I would imagine but, for the patient it is a “first”. Even if a written explanation that is given to you before your appointment may help.
I find some medical staff intimidating and sometimes just downright scary and it feels as though you are fighting with them for information about your condition.
My advice would be to find another Neurologist, someone who has been recommended by a member of the forum, if possible.
An update: Following my referral back to Rheumotology as suggested by the Neurologist who after the briefest and cursory diagnostic appointment told me all my believed PD symptoms are down to diagnosed Fibromyalgia and pain patches.
The Rheumatology department phoned offering an appointment. I was informed that my case had been triaged and they were sending me to Pain Management.
Continued - posted before I finished! So I would not see anyone to look further at my symptoms to help the PD and/or Fibromyalgia diagnosis. After I explained why I had been referred she agreed that Pain Management would not be the right people to help me. So Rheumatology are sending the referral back to GP, and I will be back to trying to get a second opinion.
Updates will follow in my saga! Thank you for reading
Rose
Hi Roro
I’m not sure where ‘up north’ you live but my OH was seen by a neurologist who sounds very like yours. He also made several comments about symptoms such as smell loss which he said were not due to PD and was very obviously out of date as well as arrogant and dismissive. Long story short we went elsewhere for a second opinion and have since been under the care of a movement disorders specialist in Leeds. If that’s an option for you, worth asking for a referral as it is a tertiary centre and has a dedicated Parkinson’s team.
Oops wrong button! Thank you Mountainair, I’m near to Preston, in Lancs, so Leeds is a but far but if it means I can get a proper assessment I would do it.
Seeing GP on Monday, so hoping to get my referral for second opinion arranged. I shall update next week
If your near Preston, try Manchester for next neurologist. It seems east Lancashire is not the best speaking from a person who isn’t a million miles away from Preston
Hi Shane, My GP has told me that Lancs NHS will not fund me to go outside the area, and that I have to go back to Preston. The two GPs I have seen have been unhappy about my having a second opinion, I had to really insist. The second, (who did finally refer me as I wasn’t going to leave his office!) wanted to try me on meds for Essential Tremor first for a few months but I refused as I have so many classic PD symptoms which do not match ET.
Frustratingly I cannot even get an appointment with the female GP who I saw in January, as she only part time. Frustrating, but I will plod on till someone takes me seriosly, listens and tests me in the usual manner.
Waaaah! Scream over, smile glued back on, albeit wobbly at times!
Rose
As far as I’m aware, you can request to see any doctor in the U.K. and they’re not able to refuse you (not to sure about re-referrals though. I did my first two privately as the usual 12 month wait for east Lancashire is just to long and the last one is a Movement specialist.
As for getting a diagnosis, I’ve had one neurologist say he was 95% certain and the movement PD specialist saying he wasn’t sure and asked if I would have a DaTSCAN which has come back normal.
The inconsistency is quite frustrating and as I know I’m only in the early stages if it is PD even though I have a lot of symptoms which the second neurologist says are consistent with PD (I even have a biological grandparent who had it), but because of my age and having no visible tremors plus the scan now says it is unexplained at the moment and I’ve now to wait another 8 months with the prospect of being re-referred to yet another neurologist
So I do understand your pain. I’m guessing it’s such a difficult illness to diagnose especially if you aren’t a standard textbook case
Hi @Shane,
Thanks for that. I have accepted a referral to Liverpool now, not sure how long the wait is yet. I have this week started to see the senior GP at my surgery. He seems interested in getting to understand my messy medical history, and has asked me to return in a couple of weeks to see him again when he has read it all. I was quite emotional for some reason, I cried through the appointment! He said it looked like an Essential Tremor, and was surprised to hear that Neurology were not seeing me again. He even questioned if I was sure I had seen a Neurologist!
I have since read the letter from the consultant. In his view, my tremor was distractible, which in my understanding he was saying I was just putting it on. He wrote off my other symptoms (the few I had had chance to tell him in the few minutes I had) as all related to Fibromyalgia!
So, the confusion continues, and on I plod. Sorry for the length of this, but it all tumbled out once I started.
Hi Roro firstly three dogs ( much better than a husband every ) what flavour?
I’m about to go on my 4th visit to my neurologist and more than likely my 4th different diagnosis.
(Very frustrating) on my first consultation after a short walk up the corridor he diagnosed Parkinson’s on left and clonus on the right because I have a permanent tremor in the right leg which stops when I walk and a left hand that cannot close .
I’ll now skip to my last visit when he said I might have athritis in the hand and the tremor could be psychosomatic so I asked him what is his final diagnosis and he replied “I don’t know”
I’ve been on levadopa and sinamet both now withdrawn to me and my GPs fraustration
we just have to keep plodding/falling on.
Hope you get your second opinion and more importantly your definitive answer
Tommy
Just a quick add on I’ve been told I had a functional tremor
and like you argued the point that when you Google that the text actually reads (swinging the lead) so I said yes that will be why I sit like a girl for a wee
not because of the mess but just in case the window cleaner catches me being
" NORMAL". AAAAARGH
Hi Tommy, I have a chocolate and cream flavoured Shih Tzu: Shoo, a mixed nut of a terrier: Lloyd, and as skinny as a stick of spaghetti, Lily lurcher. They keep me going, but not necessarily sane!
Lily can be helpful when I fall, or simple need to steady myself when standing from a chair. Size (and look) of a greyhound, she makes a great grab rail. I may have been normaI once, memory doesn’t go that far back! Sitting while weeing is better for reading btw, every paragraph helps when its a good storyline. Lucky I enjoy fiction, seeing as it is a different story everytime I see someone from medical profession. My current count is PD: 1, Essential Tremor: 2, Jackanory: 1. Should we lay bets with bookies as to what next diagnosis/guess will be?!
Such fun!
Hi Roro I’ve been for my neurological appointment and guess what .
Another diagnosis now it seems I have F.N.D oh and no athritis in my left hand that is neurological .
So now I wait for a referral to another neurologist who specialises in stroke and treating the whole patient movement , psychology , psychiatry and physiotherapy
I know all this because this particular neurologist treated my brother who died in June and have watched him stare at me shaking at meetings about my brother’s care plan although he didn’t ask why I was shaking well I wasn’t his patient then and that would be unprofessional.
So like I said another diagnosis but at least I’m beginning to be believed .
Oh and I have a 13 year old Springer spaniel and me my wife and him have just returned from Somerset having a break .
Tommy Xx
And your right sitting down for a wee is handy for reading but I can tell you standing in a public toilet with a leg tremor is not a good look LOL
Hi Tommy,
I am so relieved (!) not to have to stand to wee, I would permanantly have a damp leg! Sing a bit of Elvis next time, you may get away with it being intended
I’ve just read up on FND, it is another big mix of symptons isnt it! How do you feel about this diagnosis, does it feel right? I hope you dont have too long a wait to see your neurologist and start treatment.
I saw a third GP today at my local surgery. He actually listened to what I was saying, ie the letter from neurologist was very comprehensive BUT did not match what happened in the appointment! He was shocked when I said I had not had the checks done, and that he had not even asked me to walk! So still waiting for Liverpool for second opinion, but at least one GP now agrees I need further investigation.
Say hello to your wife and springer, lovely area you went to.
Take care, happy shaking!
Rose
No Rose
I’m not going to start singing Elvis tunes in public conveniences .
I could just see me being dragged away by the men in white coats. HA HA .
Double denim is another thing that had to go because of a certain Welsh fellow banging on about his green door .
I’ve been told this week by the vet that poor old Sammy spaniel is deaf well he is nearly 14 .
Although I must admit whatever health problems he’s had over the years have always been diagnosed instantly and operations in the same week unlike us .
But he does age faster so swings and roundabouts eh?
Tommy trouble X,
