Has this happened to anyone yet?

[pete01]

I have had Parkinsons disease since 2003 I have taken carbo-levadopa 25/100,Requip,

Comtan, Azilect, Amantadine, Mirapex Stalevo. about a year ago, I noticed some symptom chsnges indicating that the disease has advanced to another stage. My off times increased both in frequency and length of time. As a result of having more off times has led to sn ON time of 3 hours. In many cases I would start noticing the transformation approximately an hour short of the dosage schedule. I now am experiencing very intense cramping twitching of my left leg all the way up to my waist. These symptoms usually last an hour and sometimes more. I have found that, if I take a stalevo dosage an hour after the first the symptoms start to disappear and things would be back to normal for approx 3 hours or longer. This seems to increase my ON time. I would also like to mention, that I have started the B1 Therapy program and have been on it for almost 2 months, I haven't seen very much change yet, but it might be a while yet.

osage

[parkie13]

What dosage of thiamine HCL are you taking? I have no experience with the other drugs that you are taking except for Carbidopa / levodopa.

[Juliegrace]

You wrote that you've taken (past tense) all of those meds. What are you currently taking and on what schedule? It sounds like you may need to move your levodopa doses closer together.

[JohnPepper]

There is NO Pd medication that does ANYTHING to slow down the progression of Pd. So don't think that taking anything is helping you get better. It isn't!

You don't mention how much levodopa you take a day. If you take too much it can and does cause dyskinesia, which is unwanted movements and jerking. The ON/OFF effect is also a side effect of Pd medication. If you did not take Pd medication you don't have any "OFF" times.

I knew a man in my first Support Group who refused to take any Pd medication because he said it was a rip-off. He outlived everybody in that group except me. He was in his nineties when he died.

[PDConscience]

Such BRILLIANCE! (for JP anyway) He’s made the REVOLUTIONARY discovery that, if you’re not taking a given drug (i.e., not ‘on’ a drug), “you don’t have any ‘off’ time” - such revelations surely merit a Nobel for Medicine!

[gmunsot in reply to PDConscience]

Who is PD Conscience ?

[danfitz in reply to gmunsot]

He is our resident bully.

[PDConscience in reply to gmunsot]

*He's a person with a low tolerance for consistently bad advice from ill-informed (but chronically verbose) pretenders.

[skinnibean in reply to gmunsot]

He sounds like a 'Mr Grumpy'

[kommandokate]

I was DX in 2014. Last year my DX was revised to "benign Parkinson's". I started with sinemet 3x a day. Contain was added about 2 years ago. Now I take both 5x a day which has improved my on times. Blessings

[ancee]

I have had pd since 2003, I now take one 25/100 and one 50/200 cld four times a day. Plus a Neupro 6 patch every other day. sometimes I take 1/2 of a 25/100 an hour or so before my next dose to ward off the "hit the wall" feeling.

[bicyclingwithpd]

Pete01,

I used to take amantadine along with sinemet, sinemet cr, and ropinerole er. I quit take amantadine because I felt I was getting the same amount of dyskinesia no matter what dosage of sinemet I took and no matter if I took amantadine with it or not. one is likely going to have dyskinesia from the sinemet and there doesn't seem there is any way to beat it. By the way, I was also diagnosed in 2003 just like you said you were and I also am happy to report that for the second year in a row I earned the same score on my evaluation, with my PA pronouncing that I am stable-at least for now, anyway.

I suggest you experiment with your meds, trying varying doses at various times, and with varying meds. If you, by taking the amantadine, experience less dyskinesia, then you should stick with it. It's your body, and from what I am told, PD on me is likely to be different than your PD.

sincerely,

Ken (bicyclingwithpd)

[WC309]

Cramping in foot....

Discussed this week with neurologist...

Options suggested for me:

Slight reduction in Sinemet

Exercise

Massage

Heat

Aerobic workout on elliptical for 30 minutes seemed to help.

Hoping your PD becomes less challenging.

[Despe in reply to WC309]

Add Magnesium Threonate or Dr. Dean's Liquid Magnesium. You should also use Magnesium Oil. They all help tremendously cramping.

[WC309 in reply to Despe]

Hello Despe

Thank you for the information regarding Magnesium Threonate. Just did a quick search on Google scholar and there are some interesting articles in medical journals. Mg Threonate may be experimental and not used by humans? ? Do you have a source for Mg Threonate?

Dr Deans seems to be Mg Chloride. I’m NO chemist.....so.....

Maybe my dystonia has a connection to magnesium....?

I’ll keep reading.

[WC309 in reply to WC309]

Yes Mg Threonate is readily available

[Despe in reply to WC309]

amazon.com/s?k=magnesium+th...

amazon.com/s?k=magnesium+oi...

Most PwP take Magnesium in one form or another. Check this Amazon links with different brand names at different prices.

Dr. Dean's is liquid magnesium and it is Pico-Ionic, probably one of the best magnesiums. A little pricey but lasts a while since you only need 1 tsp.

Magnesium helps dystonia, sleep and cramps. Don't go to bed without it.

[Tzichi]

I have found that CBD oil drops taken under my tongue stops any twitching I occasionally in my leg.