Awaiting diagnosis, taking meds to find out


#1

Hi. I am curious to know if anybody else started their Parkinson's journey with the same symptoms as me. My consultant seems uncertain and, worryingly, if it is not Parkinsons's can offer me nothing in the way of treatment.

About 2 years ago my handwriting started to be uncontrollable, and now I cannot write a legible envelope address - after about 4 words they get smaller & smaller until they become almost a straight line. 

About 9 months ago I noticed I had a very slight hesitation (one or two seconds) when starting to move, just sometimes when tired late at night, This has deteriorated very rapidly since New Year to being every time i try to move and of many seconds duration. It is a nightmare when cooking or similar stop/start tasks. Often I just cannot get across the room in spite of trying to use tricks that used to work eg step backwards, change weight to other leg etc. But, when out in the open I can stride along and stairs are no problem, until have to stop or turn.

I have felt very stiff in back & neck during this time and fumbly and awkward  & slow with utensils, shoe laces etc. I now move around like a 104 year old, not a fit & agile 64 year old, who until last year thought nothing of cycling 40 miles and was often in front of the group going uphill. I'm now too slow to go out with them at all.

I have no tremor. My consultant says I have very slight cogwheel rigidity in my wrists.

He offered me 3 options - wait & see (I have already done that for long enough), or have a DAT scan (cannot tell me how long the wait would be) or try meds. So that is what I am doing - started yesterday, Madopar 50/12.5mg, 2 tabs a day for a week then increase to 3 a day and see if symptoms improve.  Can anyone suggest how soon I might feel an improvement or is this starting dosage too small to make any difference?

Sorry if this sounds all rather trivial to many of you but it has been devastating to my life.  Any other ideas gratefully received.   

 


#2

Hi Supa, and welcome

This doesn't sound trivial at all, and of course it feels devastating.

I'm not a doctor, so there's no point in me diagnosing you. Best I think we on the forum could say with authority is a) you don't have to have tremor to have PD, b) many people with PD will have the symptoms you describe, c) there are other conditions either related to PD or not that have similar symptoms (though I can't reel them off off the top of my head), d) a traditional way to dx PD is to see if you react well to anti-PD drugs, e) DAT scans are not necessarily definitive, but can rule out other conditions (I believe? anyone able to correct that?)

You'll find if you read some posts here that dx seem to fall into two camps: the immediate (like for me) and the takes a long time. Certainly there's no single test for PD, so it can take some time. Your consultant is a neurologist? preferably specialising in movement disorders??

Not on ldopa myself, so I can't help you with dosage I'm afraid. Or length of time till it kicks in, but maybe a couple of weeks? certainly for me on other meds the effects were gradual and cumulative.

Finally, plenty of cyclists here will tell you not to give up riding. Exercise being, apparently, really good for you (I hate exercise). Find some cyclists who'll keep up (or down) to your pace - going very fast isn't the only thing!

Finally (sorry, I keep doing this) do let us know how you get on.

very best wishes

Semele


#3

Sure sounds like PD, especially if you react well to the drugs.

When i started taking them, the effect was immediate (well, next day to be precise).  I have tremor dominant PD and the tremor ceased immediately and for the most part, it does not surface at all (when I don't forget to take the drugs).  I take a dopamine agonist, mirapex and amantadine.  I am into my fourth year after diagnosis and don't feel much different than before PD symptoms arrived.  The only noticeable effects are, like you, disappearing handwriting and a loss of word finding when I talk.

Like Semele, I encourage you to continue cycling, walking, swimming - any form of intensive exercise.  You will feel bettter.

 

Good Luck

Wpgchap

Blog - I've got that Parkie Feeling  www.wpgchap.blogspot.ca


#4

Hi Supa and all,   I have been diagnosed for just over three months but my diagnosis was straight forward. After three to four months of visits to the doctors for different complaints, balance, joint problems, hand tremor and inner tremor down one side. The doctor gave a hint that it may be parkinsons. After seeing the consultant the doctor precribed madepar 50 by 12.5mg two tablets four times a day, and like WPG Chap within a few days hand tremor and inner tremor ceased. All symptoms wont be cured but you should see some improvement. Good look Supa, let me know how you get on.  rams57.


#5

UPDATE PLUS ADVICE ABOUT WALKING PLEASE

Thank you all for your responses. Great to feel supported!!

The good news is that with the Madopar medication I am feeling generally better, more coordinated doing things like buttons & laces, stiffness has gone and handwriting is a little better - my partner can now read my shopping lists!!. And no side effects, no nausea. 

The bad news is that my walking is continuing to deteriorate - indoors & in shops problems with gait initiation increasing in frequency and taking longer to get going each time I stop or have to turn.

Wondering if increasing the amount of Madopar will help this (currently 50+12.5gm 3 x a day) as I know this is a low dose, or if another drug would be more helpful. I plan to talk to the local Parkinson nurse next week but it would be very useful to get some input from personal experiences first,

SEMELE - re EXERCISE - cycling: I am back on the bike, actually, back on the back of our tandem - we hadn't been using it for a couple of years preferring to ride solo, but now it comes into its own again. In fact we have just bought an almost-new lighter weight tandem to help us get up the hills and it has better brakes to safely descend. It's brilliant to be out, doing the only thing that makes me feel normal again, so looking forward to a bit more sunshine which would be the icing on the cake!!! cool

Also doing plenty of outdoor walking - not something I can opt out of, at least an hour a day for the dog's sanity - which is fine until he stops or I turn round to see where he has got to, then I can't start again - take a walking pole to give me a bit of confidence, like a third leg, especially useful when there are a lot of dogs playing around me.

Again, thank you all.

S

 


#6

Hi im 45 yrs old im waiting to see a neuro been told a long wait, iv been showing symptoms for about 6 months I'm suffering pain from neck and shoulder,right arm and leg tremor, slow. walking, somedays really Slow i Can feel myself sway I have fell backwards once and my Right arm has lost its swing.  ive been to PhySio and now have a walking stick, he also thinks its Pd but so frustrating,  to be left waiting and suffering till you finally see some one.


#7

hi sounds like pd to me i had to wait 3months to see neuro . he put me on madopar 3 times a day saw pd nurse 2month later she put it up to 4times a day stop the hand tremor and inner tremor.   get in touch with your local pd surport group and find out when they meet next and go along the wife and i found them very help full . keep in touch     rams57


#8

Hi ty ram57, i've been waiting for About 2 months now still not got, been given a date yet, not sure where local meeting Is will have to find out. will keep you informed how things go.  Tc  good to see you finding the group useful.


#9

hi magenta 1969     if and you feel its for you click on surpport for you top of parkinsons page click on local groups then on  local surpport for you enter post code nearest group will come up.iam sure you will hear somethink soon from the consultant if not get on to your gp in derby its around 3 month rams57


#10

Hi I'm still waiting for neuro appappointment been waiting 5 months now symptoms getting worse I'm gettig very stressed, as walking really slow and I'm finding myself stumbling more and hands now hurt St times and a lot of pain in my left heel has anyone got any advice ty   jackie ghes


#11

Magenta

That is a very long time to see a neurologist i would definately chase it up  when i went to see my Gp i was given a appointment there and then for 6 weeks later


#12

Doctors just chased it up for me I'm 19 on the list so will be another 2 months before I hear anything so I probe be lucky to get an  by Christmas


#13

Hi Magenta

Sorry to hear what a long wait you are having. Wonder what Health Authority area you are in.This is all stressful enough without such waiting times.

I have been lucky to see a Parkinson Nurse recently - being a specialist nurse she was more clued up than the consultant - the consensus of opinion seems to be that I have Gait Ataxia of a Parkinsonian type, rather than Parkinsons itself. Although I have felt generally better since taking Madopar my gait initiation and freezing continue to escalate. Have been told to keep on the meds, but I do wonder if they are actually helping.

Like you I have had falls, broke my collar bone in February, and in June managed to fall backwards when going up the stairs. (don't know quite how, can't even blame it on too many G&Ts!!) and am only just beginning to get over the resulting back pains. It does rather take ones confidence away in moving around anywhere.

What I find particularly galling is that there is no interest in the NHS in finding out a possible cause for my gait problems - they assume I will just accept the situation and move on - if only I could!!  But my whole life has changed. There has to be a cause, be it gluten sensitivity, or chemical exposure, or chemotherapy years ago, or aluminium from years of using deodorents which I now find out contains it, or a viral infection that inflamed the nervous system . . .  I just feel if a cause could be isolated it could point towards a more effective treatment. And this applies to all with Parkinsons too.

Hey ho, sorry to go on . . .  Do hope you get some support soon - it may be worth going along to a local group if there is one, just to let off steam with understanding folk if nothing else!

All best wishes

S


#14

Hi supa sorry to hear this just been looking it up so I could understand what it is u have.  Do u have to go through a load more testing if u do I hope they quick in which to  find out what causing it tc xx


#15

Hi to you! Your post almost echoes my experience.

my problem, as a man, has been concurrent with an enlarged prostate, from that the inconvenience and discomfort of an in-dwelling catheter for seven months.

 

because the catheter has been more tangible I have been under pressure to dip into savings to " go private"  to speed that up. I only have one lot of savings but I am tempted to go privately to get quicker and more personal attention on this matter.

 

grateful any comments or ideas?


#16

Finally got a hospital appointment for 6th October to see  will let you know how I get on tc all


#17

Best of luck with that Magenta.  And I have just heard that I have an appointment for a DAT scan the following day, 7th Oct, a scary prospect, but got to be done to add to the pieces of this jigsaw puzzle!!

Best wishes to all.

S. 


#18

Gl supa on the 7th oct keep me informed tc