Atypical?


#1

Hi new to the forum, I recently had CT and DAT scans both normal, the letter from my neurologist says that I should  be given a trial of Propranolol 80mg daily to treat as if this is a essential tremor, although I have to agree clinically that the symptoms are very Atypical.

My question is what does Atypical refer to ? Is this suggesting Parkinsons ? I am 59 years old my symptoms to date are tremor in right hand when doing a range of things in the kitchen, cramps in right leg, numbness in toes and right hand, lack of swing in right arm when walking, a real downturn of energy levels, tired all the time. I am an electrical engineer and frequently HAVE to work on live systems so shaking is not my friend, I have an appointment in September with my neurologist.

What should I be expecting from only my second appointment a diagnosis ? Reading some posts this can Take quite some time and seems to vary from one neurologist to another, i have had these symptoms which are getting worse for about 3 years now any thoughts etc much appreciated.

 


#2

 

Hi i'm not a doctor so obviously i cant give a diagnosis

It seems too have left you confused by it(i would be too i wish they'd use plain english at times)

I think as it says a trial of Propranolol  too see if it is 'essential tremor' I was given propranolol when i first became aware i was ill and went too the doctors for the tremor and i'm sure others here have been given it as well.

but i don't know if 'atypical'(not usual/normal) refers too your symptoms 'not usual/normal' too essential tremor'. as you say you have some symptoms that are Parkinsons like. So he may be looking too explore the PD route further, a datscan as many will tell you doesnt ness confirm a diagnosis, I know sept seems a long way ahead when you have this at the front of your mind a diagnosis can take a long time too confirm.

He might, but i'm not saying he will, might start you on a Parkinsons drug/pill  like 'sinemet' too see if it helps your symptoms.

 

 


#3

Hi, I myself was diagnosed about 8 years ago with 47 but at first they didn't know what was wrong, so I was referred to neurologist in Cambridge and did all kind of tests, thankfully he hit the nail on the head. Later on about 2 or 3 years after they did another test and the results were I had atypical Parkinson's, which is trembling on one side of the body  and apparently mine is genetic. It's a sort of gene mutation.

atypical means on one side of the body. And classified as Parkinissim.

hope it's been a bit of help


#4

Welcome to the forum, Kensington!

Like most forum members, I'll start with the disclaimer that I am not a doctor and cannot diagnose.  However, every symptom you list is associated with Parkinson's disease.  I had almost all of them myself before I started on medication.  You say that after three years of observing them, they are worsening.  That pattern is/was also like mine.  But it was about five years after my first symptoms that I began taking Mirapex (pramipexole), which eliminated all of them!  Of course, over the years, they emerged again and required added meds and larger doses.  But the good news is that I've had PD 18 years and am still living my normal life.  For some of us, it is an extremely slow disease.

So take heart.  Even if you get a diagnosis of PD, it is far from the worst dx you could get.  Think positive thoughts; exercise as much as you can; and get more than one opinion if you have any doubts at all about your diagnosis.  Good luck!

J


#5

J thanks so much for your positive words,much appreciated.


#6

J, nice meeting you.im a very active person always doing something, medication wise I'm taking at present full amount of sinemet slow release plus requip and normal kind of sinemet too, it's under control at present but I also have my bad days.  They were going to operate and do the DBS op, but thankfully medication started to work so the op is off!!!


#7

Hello, and welcome to the forum, Avalon!

I'm glad to hear you're an active person, because that factor really helps pwp stay healthier and feel more as we used to pre-PD.  And it sounds as if things are improving for you, with the meds now working.  Great!

Best wishes,

J


#8

Hello Avalon


Good to hear that you plan to keep active; I'm as active as possible, so much so some people tell me I don't have PD. My consultant actually said he might  be wrong, but then changed his mind & said he was correct 1st time. But it shows what keeping body  & mind active can achieve. I really wish you well on your journey. Like the rest of us, it will probably be a rollercoaster ride.


#9

Well hello "J", fancy seeing you here...................

Michael

aka flybaby


#10

I was diagnosed with atypical PD yesterday, and the neurologist explained it as "unusual" parkinson symptoms - apparently I'm on the young side (!) and my tremor comes and goes. He stressed that he wasn't diagnosing PD (despite my DAT scan showing diminished dopamine production) but he still gave me PD meds.


#11

This disease even confuses the specialists, it seems.  It is diagnosed by clinical observation rather than a definitive biochemical test or all-revealing scan.  My first neurologist gave me the same sort of half-diagnosis, saying he'd never seen PD at quite such an early stage.  But as my symptoms became clearer, there was no doubt.  If the PD meds work for you, that's the main thing; you can worry about labels later.

Hello to you, too, flybaby!  I finally got a photo in place after all this time. 

Best wishes, all . . .


#12

Diagnosed with early PD onset yesterday, gutted, but I will follow this forum to learn more and draw strength from all the positive people who post, advise, and share there experiences, it does help to know your not alone and it's not all doom and gloom. Cheers everyone.


#13

Diagnosed with early PD onset yesterday, gutted, but I will follow this forum to learn more and draw strength from all the positive people who post, advise, and share there experiences, it does help to know your not alone and it's not all doom and gloom. Cheers everyone. Sorry posted twice oppps


#14

Sorry to hear that, Kensington.

I was diagnosed two weeks ago today. The first few days were the worst - it felt like there was a black cloud hanging over me. Since then, I've kind of got on with it (apart from griping on here about patches and lack of sleep!).

Have you been given any medication? Any follow-up appointments?

 


#15

Hi Tabbycat

Follow up appointment in 4 months, meds prescribed Madopar 50mg 1 capsule 3 times a day for 1 month, then increased to 2 capules 3 times a day. Also my citalopram increased to 40mg  1 per day.

Have to see what effect these meds have


#16

Hi again, Kensington --

Your description of response to the diagnosis was perfect:  "gutted."  That's exactly how I remember feeling when that first neurologist confirmed my suspicions.  And it's strange, isn't it, that even though we are expecting a diagnosis of PD, it still shocks us somehow.  I felt devastated for several days.  But as Tabbycat says, that is the worst time.  It will probably be many years before PD can make you feel so low again.  You have been through the most dreadful part already!  Now you will gradually accept this annoying disease as part of your life and will understand that you can counteract most of its symptoms if you find the right meds and exercises for your specific case.

I wish you well! 

J


#17

Thank you J, actually the last few days have made me focus on what is really important.

Reading so many positive posts by people who have been dealing with PD for many years is very encouraging, i thank you all.

Kensington