Hi, i'm looking for some advice for my dad. He is 54 and has developed several symptoms over the last year or so - a tremor in his right hand when at rest (i.e. he can hold a cup of tea and walk around fine but if he then sits down his hand would start to tremor, a few times resulting in him dropping the cup of tea!), joint pain down his left side - most painful in his ankle, noticeable memory loss and some slurred/slower speech, problems sleeping (he can get to sleep but will wake up after a few hours and not be able to get back to sleep), and now daily headaches and queasiness. He says that the severity of the symptoms seems to vary - he was much worse in the summer then it got a bit better (never going away completely though) and then last week he got worse again.
His GP gave him beta-blockers in the summer for Essential Tremor, which is present in his family, but they didn't help at all and i think had unpleasant side effects so he was taken off them and eventially referred to a neurologist (a doctor, not consultant). After waiting 3 months he had his appointment yesterday and we are really not happy with it. The doctor was running 30 mins late and then spent just 10 mins with my dad, who listed his symptoms (from a written list as he keeps forgetting things). All the doctor did was tap his knees and ankle, and looked at my dad's tongue (?). He then said it was essential tremor and to try beta-blockers! My dad said he had and they didn't help - and asked what about the memory loss, joint pain and headaches? The doctor said he didn't know about the joint pain and memory loss and that the headaches were migraine. That was it. He didn't even look at my dad's hand to see what kind of tremor it was - didn't ask either.
My dad left feeling very deflated - he's been suffering with these symptoms for around a year - works 12 hour shifts and doesn't get sick pay until after 3 days off so can't afford to have time off when he's feeling rough - so is taking sleeping tablets every night and pain killers every day now to get by.
A few people mentioned Parkinson's to him before he went to the hospital - and having looked through the info on here all of his symptoms seem to be there - and his tremor is the kind related to Parkinson's (resting tremor) rather than the kind related to Essential Tremor (active tremor). I've read that it can be often misdiagnosed - i don't want my dad to be suffering with these symptoms for another year without any medication - it's getting him really down and i haven't seen him like this before - he's not one to complain at all, but says this makes him feel horrible so i know it must be bad. I want him to get a second opinion and have offered to pay for him to see a private consultant. There's no way we could afford for him to have any scans or tests done privately - but would just like him to get a proper consultation - not a rushed 10 minute one.
I just wondered if anyone could offer any other advice? - am i wrong in thinking that it's unlikely to be essential tremor because of it being a tremor at rest rather than when active, and because the beta-blockers did nothing to ease it?
My goodness you dad seems to have had a dreadful consultation by the neurologist. I too saw a neurologist about 5 yrs ago he was not very nice in fact he was very abrupt with me. I was diagnosed with Essential Tremor as my sister has it. I was given beta blockers and sent on my way! In 2009 my symptoms were worse I asked to be referred to another cons. as I was not happy with the previous one. To cut a long story short I now have an excellent consultant. I was diagnosed with PD which is what I thought I had and I am now on treatment and my quality of life has increased 10 fold. I was 55 when diagnosed with PD. Go back to your GP it is your right to ask to be referred to another neurologist as you were not happy with the previous one. Keep pushing your GP dont be fobbed off. Good luck, I wish you and your dad well and I hope you get the answers you want.
I have just been on the NHS website and it gives you advice on there about having a second opinion and how to go about it. Hope this helps.
Thanks for the advice Wifit. I asked my dad if he questioned the doctor about whether it could be parkinson's and he said no "he's the expert". My dad isn't the pushy type and doesn't like to moan so would probably also downplay symptoms. I've told him to push the GP and also not to understate anything because he needs them to take notice. He's seeing his GP today to hopefully get another referral letter so that we can book an appointment with the private consultant. Fingers crossed!
Are Parkinson's meds expensive? I'm wondering if part of this is to do with money - if essential tremor is a quicker and cheaper diagnosis in terms of the meds given for it then maybe they'd rather try that than try Parkinson's meds. I just think that because they tried Beta blockers and they didn't work then maybe they should try Parkinson's meds and if they work it's great for my dad to get some relief from the symptoms and probably adds weight to a diagnosis of Parkinson's. But if those meds are expensive i guess they wouldn't like to do that.....
This neurolgist doesn't happen to be from Eastbourne by any chance? On my first visit i told him about tight feeling in my right thigh he suggestd it was just restless leg syndrome!i told him i had experienced that a few years before in lower legs and it was nothing lke that (fell on deaf ears) also had goosebump experiences in my left thigh in repetative manor, again he fobed me off saying it was probably a trapped nerve! I too took my list of symptoms one of them being deteriorating handwriting and he took a glance at this and said 'that doesn't look bad! Next came the examination taps on knees ankles etc but while i was waiting my right foot started involuntarily wobbling and was noticed by the nurse so he payed attention to that. The finger tapping test also wasn't too good so i think this convinced him to send me for a Dat scan.(proved positive) On my 6 week return after diagnosis i hadn't taken the meds he prescribed and he used those words 'Iam the expert' when i dared to ask questions. Hence i haven't yet made a return appointment nor was offered one.
I agree that you need to go back to GP and ask for another oppinion with another neuro. Even if it's not PD your dad might get another diagnosis or some meds to help his situation.
Best wishes to you both
Hi SairyG sorry to hear about your dads experience I am the same age as your dad and diagnosed at 50; You can have an active tremor with PD I have both an active tremor and resting tremor I developed both at the same time.
My Consultant was very thorough during my initial consultation and even before he sent me for the DAT scan he told me he was 99 percent sure I had PD.
I would definitely push for second opinion and you shouldn't need to go private.
I agree with the comments said already you must keep on top of this as we had problems thirty years ago with my husband's consultant and ended up driving 40 miles away to see a different consultant, I find it very frustrating that these things are still happening today but it is his body and life and you must push for the best treatment. Once he gets the right diagnosis he will feel much better and enjoy a better quality of life, please let us know how he gets on, go with him if you can as it helps to have someone there to ask the questions he forgets, like all of us.
not suggesting self-diagnosis, but there are a few things you can try at home if you are curious.
- a small alcoholic drink often stops ET tremors and rarely stops PD
- pd handwriting tends towards small ET towards big and shaky
- spiral drawing ET tends to show fluctuations in drawing
just for fun, though might encourage/discourage looking for 2nd opinion
I would recommend trying to see someone else if possible. My husband was daignosed with Essential Tremor in 2010. things got worse more or less the same symptoms that your Dad has. In 2011 he had a DAT scan which confirmed Parkinsons but one of the things the nuerologist did do was tell my husband to sit with his hands on his legs and say the months of the year backwards. As he got further into the months his hands were shaking violently to which the doctor said that is one of the symptoms of Parkinsons. The brain cannot function properly doing two things at once. We have a brilliant nuerologist at York District I hope you find one too.