Need Help and Advice On What I Can Do To Relieve The Intensity Level of My Current and Parkinsons Disease Symptoms

[neilp02]

I was diagnosed with Parkinsons disease in 2003 disease. I have the rigidity type of Parkinsons disease and the symptoms have changed as to intensity level to be almost unbearable. It started out on the left side, but is now resident at a lesser level on my right side.The symptoms when I go into an off period are lasting a lot longer than they used to. My medicine history started out with Requip and next was Comtan, then Amantadine followed by Mirapex and then Carbo Levadopa 25-100. I had a lot of fluctuations due to absorption etc. The carbo levadopa 25-100 worked the best for me for a few years,m but due to progression of the disease early on I was changed what I am taking now which is Carbo-Levadopa With Entacapone 50-200 also known as Stalevo. The Stalevo has been working good for me, but now appears to not be working so well due to wearing off in 2 hours or less. I failed to mention that I was also taking Azilect. So for about 2 years, I was taking the Stalevo, Azilect, Mirapex and Amantadine until lately when I reduced to the one's that I felt were still working for me.

The problem I am having now is that I am experiencing severe muscle spasms and tremors and extreme tightness starting with my left leg. As soon as it hits me I start to degrade very fast in my walking so that I can't move my feet and legs and have to literally crawl at times on all fours getting to the bathroom and to my recliner I have an attack I take one Stalevo, but the unbearable tremoring and intense tightening and drawing of muscles in my legs keeps going on for about 2 hours or so and it is literally driving me up the wall. The only thing I can do when I am on these off cycles is to sit in my recliner and hope the symptoms will dissipate soon. My current dosage for the stalevo is 6 times a day and I normally have about 4 or 5 down times throughout the day. My neurologist has said that he could not do any more for me at my advanced level and has referred me to the leading Parkinsons Specialist in an adjacent city still in my local area. The course of action they are investlgating is either a duo pump or possibly DBS surgery. At this time I am not sure if and when this would take place, but I am currently having a lot of problems which is also interfering with my family life as well. I have been following Dr. Constantini's B1 therapy program and am taking about 1000 grams daily. I am not yet to the dosage level with this where I am seeing any results, but hope eventually to be at that point within a few weeks or months. I am thinking though that there is more options for me no matter what my neurologist thinks and if I could find something to lessen these leg tremors it would be a blessing. I hope there is someone who could give me input into what they have done if they have been in a similar situation.

[johntPM]

You may find it useful to run your drug regimen through an app that I've written. It graphs, on a minute by minute basis through the day, your estimated levodopa equivalent plasma levels.

parkinsonsmeasurement.org/t...

See if this gives a reasonable match with what you experience. If it does then you can play "what if". What if I move this dose forward or back or delete or change its size?

John

[neilp02 in reply to johntPM]

Thanks John. I will start using this tool. I guess, I didn't realize that something like this was available.

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[park_bear]

I have found that vinpocetine helps a bit, as does mannitol.

[KERRINGTON]

If I don't take around 400 mg of magnesium theonate every day, or so, I will get extreme cramping in my hands, feet, and calves. I've had PD 10 + yrs..taking much more B1 than you are.