New to Forum


#1
Hi diagnosed in 2007 with benign Parkinsons so hopefully right diagnoses, have had 3 scans last one at Adensbrook hospital with injection first, not sure what that scan was called. Have question about medication but will put that on the Medication page. Not 100% sure what benign Parkinsons means. So look forward to using the Forum. :neutral_face:

#2
Welcome sugarplum-- lovely name!

Was it a Datscan you had with an injection beforehand? My diagnosis was 2 yrs ago, I'm sure you will get replies soon from people who know more than I do.

#3
hi sugarplum to puk forum,im ali ive been dx for 11 half years im 43 years old.there lot of surport on this forum,and nice freinds to be made:smile:when u had the injection,it sounds very much like you had a datscan .can you tell me when they said benign parkinsons to you.do you no if it was benign tremulour parkinisonsm they said or benign essential tremor.cus there different benign parkinsons you see.:smile:

#4
Hi Mosi & Ali J

Thanks for reply I was told I had 'benign Parkinsons' not essential tremor but looking up benign it meens 'kindly, mild & gentle,not malignant, which is not the way I feel at the moment!! Just been prescribed new meds Co-beneldopa and Motilium and had a very bad reaction to Co-beneldopa so not too sure whether to take it again. :frowning:

Thanks again

#5
hello sugarplum & welcome to the forum.
I should imagine that your scan , if preceeded by an injection was a DaT scan , which at present is the best available clinical test for a dx of pd.

Clinical data suggests a significant difference between at least 2 types of idiopathic pd (i.e. of unknown origin), distinguished by the time course of disability (if any).

Results suggest that the degeneration of the dopaninergic nigrostrol system ( believed to be the cause of idiopathic pd symptoms) occurs far less rapidly in the so caled "benign cases".

I am unfamiliar with the medicication you are prescribed. May I suggest that before you make any changes to your drug regieme that you consult your pd nurse (should you be lucky enough to have one,) your GP, the PDUK helpline 0808 800 0303. A qualified nurse will 'phone you back asap. Or pester your consultants receptionist until you get some answers.

I am not suprised that you are not feeling particularly "benign", but hang on in there. Should you care to trawl through this site, you will find many inspiring stories and hopefully realise that a dx of pd is not the end of your world.

I wish you all the very best

AB

#6
Hello Annebernadette

Thanks for reply yes I have a PD Nurse practitioner so will give her a phone I am still taking Rasagalin and Amantadine which seems to be okay as far as side effects are concerned so see how it goes. Thanks again for reply.

#7
have just joined. my 74 year old husband has not had the official diagnoses as yet but we have had the falls team round because of falls and everyone seems to think he has got Parkinson's. due to the fact that when he walks he keeps his rt arm bent he tends to shuffle his feet slight tremor in rt hand. have been going back and forward to gp and all he has done is give out antidepressants.

#8
Hi all

Dx'd this week from the results of a DAT scan - found out from a cc of a letter from my consultant to my GP. Not due to see my consultant until July but made an appointment to see my GP on Thursday.

PhilB

#9
Hi jzygirl,

Welcome to the forum. I have to say these are classic (some would say bog standard symptoms ) of PD. I would be inclined to change my GP. Depression can be a symptom of PD as well but the other signs combined should have triggered a referral to some sort of specialist. I knew the common signs long before there was any question of my having PD and I have no medical training. Lack of arm swing is common which I had but even with meds I occasionally find myself dangling my arm with the elbow bent. The shuffling gait is classic or dragginging one leg or tripping (dropped toe) for no particular reason. Problems with balance are also very common. If you go to the Parkinsons UK home page and thence to publications no doubt there is a leaflet on the symptoms of PD and the various drugs used for symptom relief. A trained eye can see these almost at a glance which can make for a disconcertingly short interview with the specialist.

Ideally you should be seen by a neurologist with a special interest in movement disorders (although in fact PD involves more than movement problems) or a geriatrician with a similar special interest.