Waiting for a diagnosis

Got a cancellation for neurologist for my  tomorrow. Hopefully get results and medication

Hi Semele

Yep I'm taking the drugs lol.  Started on seminet to see how I reacted ,I felt better after the second pill n now I'm on 6 mg of requip and feel even better , have even gone back to work part time so that shows the value of meds ,at Easter I could hardly function now while not perfect I do have a large part of my life back, will be trying 8 mg from Saturday n hope for more improvement , :-))

I still have off days n hit a wall at about four o'clock for n hour or so but the overall result is very good 

   Live well   Cc

Hi Cheshire Cat,

Our Neorologist suggested that if a dose wears off regularly leaving one with an "off" period, to bring the next dose forward and then when "on"continuously, try reducing the dose slightly and see if the mobility is maintained.

Worked for my husband who now takes a slightly lower dose but every 2 hours, experiencing no off times.

Good luck!

GG

Hi GG

   Yep that makes a lot of sense will have a chat with my pd nurse and see what she thinks,

   Thanks for the advise I will let you know how it works out. :-))

   Live well.  Cc

It's great to hear you're doing so much better!  What would any of us do without those effective meds?  They give us life and hope again.

Best of luck --     J

These meds sound gt  hope neurologist   gives hubby some   tomoz glad to hear  they  working so well for you all.  Gives me a lot  of hope.

My hubby got his diagnosis on Wednesday of having PD. Consultant going to write to GP with recommendations of medication, and is also contacting PD nurse to get in touch with us. So heres hoping meds will be of some help. 

Hi my gp is pretty sure I have pd , waiting for hospital appt to confirm . My symptoms are tremor ,no arm swing on left and foot drop . Drs thought limp was from neuroma in foot but had it removed 5weeks ago. And leg is worse can't seem to pick it up . 

Once you start  medication how quickly do you see effect? Will my walking improve ? 

Hi, Kittens3 --

We're all different in our responses to the medications, but I think most patients get fairly fast effects.  In my case, I had a reduced arm swing, shrinking handwriting, an awkward gait, inability to move my legs in a swimming pool, and an occasional hand tremor.  I started taking only Mirapex (1.5 mg. if I recall).  Honestly, within two days I noticed a difference, and within two weeks my symptoms were completely gone.  That was many years ago; the symptoms re-emerge sometimes, necessitating higher dosages and new drugs in combination with Mirapex (pramipexole).

Best wishes for fast results and no side effects!

J

thanks for response , that sounds encouraging.

feeling about numb about it all at moment 

Yes, I remember my reaction of shock, numbness, and distress when I first suspected and then learned definitely that I had PD.  It takes time to accept a disease like this one.  If you do have PD confirmed, just try to take each day as it comes and not worry too much about the future.  It is slow-moving in most cases, allowing you time to adjust.

J

Hi Kitten3

Ive been told repeatedly we all respond differently, but I can tell you my gait improved a bit very quickly after starting the medication. Now 3 weeks of taking pills and the fatigue I had felt has almost gone and the tremor has improved. Handwriting still a problem however.

Stay positive.

Best wishes, Nomda

 

Thanks for reply . The waiting to find out is hard but friends are rallying around .. I'm trying to stay hopeful that I'll be feeling better in months time

best wishes

The waiting is the worst part.  Its almost a relief when the diagnosis does come.  Having spent a day in hospital undergoing tests for everything from PD to Multiple Sclerosis, I know things could be much worse.

Ten years later and the PD is troublesome, but I can cope with it and am determined not to give in.  I continue to work full time, manage the family home and have a social life.  I get very tired, but I will not let PD rule my life.

The medication does help - I couldnt manage without it now.  The best advice is to stay positive, dont let PD run your life, reduce stress levels as far as possible and just hold on to the thought that there are thousands of us out here with the same problems who are ready and willing to support those who are new to our community.

Good luck  and hope you soon find out what the diagnosis is.

having bad day. gp referred me for urgent appt ,week later not heard anything , they're suppose to phone me with appt by tomorrow. the rational bit of me says still have today and tomorrow to phone .the rest of me is in bits. can only think of not being able to work and losing everything ive worked so hard for.

went through messy divorce that left me with loads of debt , kept house going put 3 kids through uni and everything planned for retirement with lump sum pension to clear debt and mortgage. just need to work another 5-6 yrs. but im intensive care nurse and is that now possible?

sorry very negative today ,cant stop the tears

keep the faith Kittens, we all at some stage ended up like this. Just dont give up and see if you can contact the social nurse if there is any. When you feel down your PD will be felt extra too. In the worst case call the Samaritans, they are very good and they listen, it helps even if there is no answer right away. And for the job, if you are an intensive care nurse maybe there is some alternative you can do like training or teaching. With the bags of experience you have i am sure they welcome you for this with open arms.

 

keep smiling even tho its hard.

You all are such beautiful people. I pray that you will help me through a positive diagnosis.

Hi,

 

Sure we will. We have been all in the same ship so we know what youre going thru. As long as you know there is help outthere and youre not alone. For the rest stay positive and still enjoy life, its too short....