Not sure what's happening?

I was dx with PD a few months ago by neurologist. My dad had it too. Mostly resting/postural tremor/twitching left arm, that I have noticed for 2 years. Now some postural tremor occasionally left leg. Some occasional muscle stiffness left side but only if shaking has been bad. Lots of muscle twitching. No slowness. I held off doing the senemit challenge until this last month. Titrated up to 3x 25/100 with very minimal improvement. Some days took 2, some days 3, but really didn't seem to make any difference. The only thing that appears to help is propranolol (especially the day after I've taken it-tremors markedly reduced. Ativan also helps. So I'm cutting down on the senemit so I can stop altogether. Trouble is today I'm having weird balance/woosy feeling. Don't normally have balance issues. Not sure if senemit related or a flu/virus/or PD? Neurologist didn't think it was atypical PD when he dx me in nov. I don't know what is happening. Cant see neurologist again for a few months. Any suggestions please?? This is so fraustrating.

10 Replies

  • I have no evidence to base it on but often wonder if meds can add to symtoms ?

  • Just because you have PD, doesn't mean you can't get the flu! Can you call or email your neurologist? If you are in the states, you could try calling the National Parkinson's Foundation hotline 1-800-473-4636.

  • Your circumstances sound very similar to mine circa four years ago. It may help if I pass you a few of my learns with the caveat that everyone's different

    I have been on simemet for 3 years three times a day dosage increased last year to 37/100. It is a sleuth agent seeks out dopamine. I needed to take it for months to see results and overcame nausea . It is great for easing stiffness and aching so improving balance easing muscles mostly in shoulders and back. It has minimal effect on tremor

    Propanalol I take if I am doing group meetings and training at work it simply takes down my heart rate so easing tremors in short it works pretty well but as I have a low resting heart rate anyway it can cause woozy feeling and therefore use only when needed

    As I said everyone's different my learn was to be patient stick with drug once committed to give fair chance good luck

  • Yes, it is terribly frustrating to wait for weeks to see your doctor when you need some serious tweaking now. Since propranolol quieted your tremor, do you think you may have essential tremor? They prescribed propranolol for me at one point as a diagnostic, saying PD doesn't respond to it but essential tremor does.

  • I'd love to believe I just have an essential tremor!! It does make me wonder bout the diagnosis because I havnt responded to senemit. I thought essential tremor is both sides? I have only left side affected. Left leg/foot twitches now as well. Maybe I needed to stay longer on the senemit to see if any benefit like aleagle suggested. I thought it was supposed to work pretty much straight away...but maybe it needs weeks to build up in the body?? Does anyone know?

  • Your symptoms sure seem like PD. I found there was a world of difference between the default immediate release Sinemet and Sinemet CR - "controlled release". The CR version gives a nice steady release of levodopa over 8 hours or so, vs the default version which gave me a quick rush of too much, then too little.

    It did work right away for me, but allegedly can take some time.

  • I looked at the medicine bottle my sinemet came in and it says "sinemet ER." I assumed that meant extended release ... ?

  • One would think so. Was that a typed label created by a pharmacist? Merck refers to their time release version as "CR" as shown on this page of their prescription products:

  • That is extended release

  • Sorry to hear you have been diagnosed with PD I was diagnosed in 2010, I have a PD nurse who I can contact any time but if she's not there then I will get it touch with Parkinson's UK who can give all sorts of advice they also have doctors and nurse's who you can speak to. It is a site worth joining. I'm sorry to say this but from your post I think you are finding it hard to accept that you have PD, please correct me if I'm wrong. But PD doe's not go away the only way is to keep fighting it, there's no cure at the moment, in fact their is'ent even a test that can prove you have PD. Keep you chin up and try and be positive.

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