Confused After First Neurology Appointment


#1

Hi, I was referred by my GP due to having a resting tremor in right hand
after she had checked how I walked and turned. I had other symptoms as well. This was in January 2018, I had the appointment with a Neurology consultant today. I have come out feeling confused. He asked why I thought I had PD, so explained my symptoms, tremor, etc (I ticked yes to 20 out of 30 symptoms on the non-motor questionaire from this site). He asked if my writing has changed - which I confirmed, but he didn’t ask to see me do anyhing. He bent my wrists, got me to touch his finger then my nose with eyes open and open and then close hands ten times. No observing my walking, or gait or anything else. He said I definitely do not have PD, so I asked was it Essential Tremor (as both are on my Mum’s side of family) and he said no to that and that it was all down to fibromyalgia and my Butrans pain patches for oesteoarthritis - I was being shown to the door by now. I was in the room for less than ten minutes. I am left feeling baffled, and really at a loss to know what to do. I don’t feel that much of examination went on. I would appreciate other people’s views and experience as I feel he thought I as wasting his time. He left me with the comment that PD is a serious condition! Presumably I should have been leaping around with happiness, but I did not feel he had adequately tested me, and just wanted me out of the room in record time. Having seen my mum living for years with it, I’m aware of the seriousness of the condition. Sorry for rambling, but I dont know what to do now.


#2

Hi Roro,

I am really sorry to hear that you have had an upsetting experience on your neurologist appointment today. Hopefully other forum members will soon share what their experiences were like, but it might be worth calling our free and confidential helpline to talk to our trained advisers or Parkinson’s nurses about your symptoms and find out what you can do next. You can reach us on 0808 800 0303 Monday-Friday: 9am-7pm, Saturday: 10am-2pm.

Best wishes,
Mara
(Moderation Team)


#3

Thank you Mara, I will give a ring in the week.
Rose


#4

Hi roro i was told tha pd can onlý be confirrmed by spect scan as it really manifests when 80% of ďòpamin is lost.my neurologist tried to convice me i had tremor due to depression ??? Tried to get rid of me with betablockers but after some blood tests he called me back within aweek. Spect xcan then diagnosed me.my age threw him.


#5

I had the misfortune to see a locum at my GP surgery who fobbed me off. I had sleep problems and she told me to go home relax and have a cup of Horlicks.

I decided to get a second opinion, saw my registered GP who referred me to a Neurologist and I was eventually diagnosed with Parkinsons.

Book an appointment with a different GP at your practice - hopefully the first doctor is correct and you do not have Parkinsons as I wouldn’t wish it on anyone.

Good luck.


#6

Thank you JaniceofGREENOCK,
That is so useful to know. I shall be definitely looking for a second opinion, though being up north there isnt a lot of choice in consultants.


#7

Thank you Lesley5677
I will be chasing a second opinion,though it was the Neorologist consultant
who did not want to properly examine me. The GP who referred me did more motor tests than the neurologist!


#8

Ho Roro
Sorry to hear about your frustrations. I, too, have been somewhat frustrated with my experience to-date. I went to my GP in October last year with a slightly worrying and pretty comprehensive bag of symptoms (all the normal stuff - handwriting ,gait, tremor, weakness, etc). Like you, I got a referral to a neurologist but had to wait over 4 months ('till the end of Feb) for my 1st consultation. My neurologist did some rudimentary checks and confirmed that he THOUGHT I had PD. He put me on Madopar but here we are at the end of June and my medication seems to have had no effect whatsoever. I had my second consultation just last week and the consultant simply increased my dose and said he’s see me once again at the end of November (5 further months). It does seem that the neurologists are either extremely busy or PD just takes a lot of time and/or trials with drugs to have a confirmed diagnosis. Either way, it’s frustrating suffering months of symptoms between chats or feedback, always, seemingly against a backdrop of wondering whether it really is PD or one of the mimic ailments!
Good luck with your second opinions.
Best wishes
Paul


#9

Thank you Paul, it appears I am not alone then. Though my consultant is just referring back to GP, he was adament I havent got PD or Essential Tremor.I waited 5 months for nothing. It doesn’t give me any more trust that having read many feedback reports from patients who say that he didnt diagnose other conditions such as MS, including one peson who had been diagnosed and treated for MS for three years by the time he saw them and denied they had it!
Had he done a full range of tests on me, fine, but he didn’t. So many others said he rushed people through appointments and had no time to ask questions let alone listen. Good luck and I hope you get clarification soon.
Rose


#10

Hi Rose,

I too feel for you. Pd can present differently in women and those with early onset. For women it is often misdiagnosed as fibromyalgia. That’s not complete incompetence on the part of your MD as both involve neural dysregulation and pain for women. A resting tremor, however, I thought would have been a very strong tip.

Anyway, Women with Parkinson’s are now being studied or funded for Research in United States, so that’s good news for us for the future. A cure would be better.

Here in the US when we hear about someone (a woman espevially) not getting proper diagnosis, the first recommendation we make is for you try and see a motion specialist, Who are with in the department of neurology but specialized for Parkinson’s. A general neurologist is not equipped for the subtleties, vagaries, nuances and varieties of Parkinson’s. Not their fault, they just don’t have the training.
There are parkinsonisms that don’t respond to drugs at all, but l-dopa is a good place to start with a motion specialist. DAT scans are apparently not considered reliable anymore. And won’t help you to feel better if You receive a false negative.

I apologize for this posting being humorless. I prefer reading the fun ones too!
My very best wishes to you with all my heart,
Chrystal


#11

Thank you Chrystal,
That is interesting to hear about the confusion between Fibromyalgia and Parkinsons. The Neurolgist I saw specialised in migraines, so perhaps that explains something. I also thought the one sided tremor was important. All the more information to take back to my doctor as I ask for a second referral. It will take many months, but I cannot ignore the symptoms. Thsnk you for taking the time to help.
Rose


#12

My husband has PD and was diagnosed by spect scan as well as observation of walking,lack of arm swing, upper body stiffness, typical PD facial mask poor handwriting to name a few! I feel you should definitely ask for a second opinion as you have not received the correct tests to definitively decide whether you have PD or not! Hope you get some answers soon. Good luck
Heather from Greenock


#13

Thank you so much. As soon as I can get a GP appointment I will ask for re-referral for second opinion. The waiting lists are long here,for Neurology, but I will keep plodding (and shaking!) The support on this website is amazing.


#14

My own solution to the problem was to pay to see a private neurologist who specialises in Parkinson’s. My nearest Nuffield hospital has a weekly Parkinson’s clinic. The cost for the initial examination was £250.

By that time I’d had an MRI scan and blood tests on the NHS, so the consultant’s fee was the only cost to me, and I got a diagnosis on the spot. The consultant suggested I went back to the NHS for follow ups, but I could see the advantage of staying with him. Follow ups are only £150, and I’d rather pay that than wait four or five months to see an NHS neurologist every time my meds need adjusting.


#15

Thank you Jane, if I could I would do that, but as I havent even had a blood test on NHS the cost would be much more and I dont have access to pay things having been out of work for over four years. It is a good way for those who can afford it. I now have a GP appointment this afternoon as someone cancelled.


#16

iI had similar experience it took 5 years and 3 neurologists to get diagnosed and treated. My GP was very supportive fortunatly. i like you had a family history of parkinsons but was told by 1 consultant told me that was irrelevant.
I have found the whole process stressful and confusing and underwent many unnecsary tests and eventually a dat scan which showed I had parkinsons. talk about NHS waste if that test had been done at my fist appointment a few thouands pounds would have been saved.
dont worry about venting your frustration we all need to do that to releave the stress caused by mixed messages and being tatalked down to at times as if we dont read and understand information freely availably
the regret i have is not seeking a 2nd and 3rd and third appointment earlier.
good luck in your search for a diagnosis that matches your symptoms.
Julie


#17

Thank you, I shall keep going (and whinging at times!) until someone proves what I have.


#18

Good luck and let us know how you are doing. It’s such a frustrating process getting a consultant to actively listen to what you are saying. I go to a local Parkinson’s support Group and no two people are the same. Most people have possibly two symptoms the same but it seems to be if you don’t have tremor or stiff gait ect then you can’t have PD! Keep on until someone listens to what you are saying and hopefully you’ll get some answers.


#19

Thank you, I am ready for the steady plod on to diagnosis!


#20

The saga continues. I saw my GP yesterday who says he has to refer me back to Rheumotology about Fibromyalgia as that is what the Neurologist has recommended. The same Rheumatology department that assured me in May 2017 that my right sided tremor was definitely nothing to do with Fibromyalgia. So not second opinion or tests from Neurology for me yet! GP said that if he tries to send me back to Neurology they will refuse to see me, as only just had an appointment. I couldn’t get GP to understand the lack of interest Neurolgist showed in testing me, or looking into my symptoms.
So, I am going to keep a diary of everything for a few days and take it with me to Rheumotology to see their response.
What fun! Have to keep smiling, else will cry.