Have I been diagnosed wrong?


#1
Hi All I am posting on behalf of my father-in-law who was diagnosed with PD Feb 2017. He initially went to the doctors as he was experiencing a weakness in his right hand arm. He was also struggling with his co-ordination and had become unsteady on his feet. His right hand side is pretty much useless and the only time he experiences any type of tremor is in his right hand when he tries to complete a task e.g. cutting food, writing etc. As the wait to see a neurologist on the NHS was so long he went privately and was diagnosed with PD. He was stared on Co Careldopa 25/100 taking one tablet three times a day as he experienced no improvements in his symptoms this was increase to two tablets three times a day. The neurologist led him to believe that this should improve his symptoms however he’s still waiting. I'm just curious to see what other people’s experience of this medication are and their responses to it. He’s becoming increasingly frustrated with his symptoms and he’s not 100% convinced he actually has PD as he feels he doesn’t have the typical symptoms (as in tremors) and as he is not responding to the medication as expected. I would I be interested to hear if anyone else has experienced similar symptoms to him or has any advice? I should have said he has an appointment with a Parkinson’s Nurse in June. Many Thanks in advance your support is much appreciated. Carly & John

#2

Hi,  Your father-in-law was only diagnosed in Feb. this year, so the medication hasn't really had a chance to work yet. It can take several weeks to feel any benefit at all. His symptoms do sound like PD and not everyone has a tremor......in fact I have no hint of a tremor, but have weakness and slowness on my right side, (bradykinesia). If there is no improvement by the time you see the PD nurse in June, she may suggest a different drug. I take Madopar and get considerable relief from all my symptoms. Sometimes, it takes a while to find the right medication for each individual patient, as no two people have exactly the same symptoms with Parkinson's. One thing to consider is, taking the medication an hour before, or an hour after food, for maximum effect.  I hope he starts responding soon and gets some relief. 

Twinks.


#3

HI Carly and John,

                                    I do very well on Co-Careldopa.

It is sometimes given to a patient as a diagnostic tool, i.e. a good reaction to this drug = must be PD .

Neurologists have no 100% certainty that they get the diagnosis right first time, but they find over the course of time the overall picture of the disease becoming clearer.. Sometimes they do revise their initial diagnosis. Although the man in the street would mention shaking/tremor as the first  (and certainly the most visible)  symptom , a lot of Parkies do not shake.(see Twinks) . I don't shake very often.either. There is, however, no test to definitely confirm a PD diagnosis. Only a post mortem gives 100% certainty. After about 4 weeks of exposure to the most successful drug for PD (CoCareldopa) I would expect to see an improvement in your father-in-law's condition. Parkinson's is the more likely  explanation for his symptoms, the next step is his follow-up visit to the neurologoist, he did get a follow up appointment with the consultant, rather than only the nurse?

As Twinks mentioned taking the drug away from meals, either half an hour before or one and a half hours after  food ( ideally on an empty stomach)  is for some patients more important than for others, but the general advice is,  take it half an hour before food (i.e.meals, if not tolerated on an empty stomach take a biscuit with it)  Levodopa is an amino acid  and competes for absorption with other  protein in  food when it arrives in the small intestine. Taking the drug with a heavy (slow digestion) meal or a meal high in protein  could completely negate the desired effect of the  medication. 

Best wishes, Kate


#4
Hi Twinks Thanks for this I've passed the info over regarding best time to take meds thanks Carly

#5
Hi Kate Thanks for your response. Unfortunately as he went Private due to the waiting time to see a Neuro on NHS his referral was not processed. We're hoping that the parkinsons nurse specialist will refer him when he sees her next month as his GP won't do anything until he's had this appointment. I have shared with him both your suggestions with timings of meds thanks very much. Carly