Brief Answer:
Just responded but here are a few more thoughts

Detailed Answer:
Hi,

We didn't really talk about this too much but have you been attempted on NON-PHARMACOLOGICAL means of relief by way of physical therapy, relaxation therapy/stress management techniques, biofeedback, aquatic therapy (water jogging is a particular favorite exercise we order for calf muscle dystonia), or even acupuncture? I would say that these are all worth looking into if conventional medications and other interventions fail to yield results.

And then, there is a device that I have found has made a difference for some of our patients with spastic and dystonic disorders of a localized type called SOOTHEAWAY. You can see more about this device which was originally devised to treat migraine headaches by a neurosurgeon from where else?....The Best Location in the Nation! HA! But it was quickly realized that there was cross discipline application for things such as chronic pain, swelling, and muscle spasticity. Check out: www.sootheaway.com. There are different pads for different body parts. For the calf I would suggest the UNIVERSAL PAD attachment.

We distribute on the order of 25-50 of these units monthly at the XXXXXXX VA Medical Center to veterans of all ages from the young to the "more mature" and for a variety of reasons. The vast majority have had terrific things to say about the machine. Give it a look see....I don't know where medical insurance reimbursements stand on such equipment...not well I'd imagine if I were to just guess....but truthfully, I'm not sure.

There are also several types of complementary medical therapies which some patients have responded to when nothing else seems to work.

One other item from what you wrote. I'd like to clarify the information you have on the relationship between the effectiveness of carbidopa/levodopa in the presence of protein. This is something I worry about much more in my Parkinson's patients but it is true that there is a competitive situation in the gut between the medication and protein.....but that is only when there is greater than 30% protein content by calories in the meal being eaten and this is also assuming that the patient is taking their pills LESS THAN 2 hrs. away from meals...which in your case is probably not as long as 2 hrs. since I don't suspect you have slowed gastric emptying or anything like that.

So in your case, I would say that so long as you take your carbidopa/levodopa no sooner than 60 minutes prior to or after meals and if your meal that day contains no more than 30% caloric content of protein there should not be an issue of bio-availability or significant reduction in medication absorption. Of course, the point may be moot anyways since you've already said that the medication doesn't seem to be working anyways.

Final point before we call it a day here in the North (I just discovered that you appear to be way down south in the XXXXXXX area). Looking at your medication list I have to make mention of the fact that Simvastatin is known to cause muscle cramping and spasticity. I see you are on lorazepam but that it not nearly as effective (for some reason) as its cousin, clonazepam for dystonia...so I wouldn't be surprised if you told me that you didn't think my suggestion of Klonopin would work from the other question I recently submitted to you since you were already on Lorazepam....so I've covered that for you. For some odd reason Klonopin is really the benzo of choice when it comes to dystonia.

Don't forget that you can always address questions directly to my attention by going to my personal page on this site at:

http://doctor.healthcaremagic.com/doctors/dr-dariush-saghafi/68474

If you were pleased that I snagged this question as well to put down a few more thoughts that I had wanted to say in the other writing but didn't so as not to make you read WAR AND PEACE: THE DYSTONIC PATIENT.....then, another bit of feedback with a STAR RATING would be sincerely appreciated. And to the same end of appreciation and gratitude if you'd CLOSE THE QUERY on your end the network can process, archive, and credit the question appropriately for future reference.

This response required 34 min. of physician specific time to review, research, and document in final draft for envoy. Wow...93 minutes of time writing to you dystonic calves! You should be able to clone a new calf muscle with all the information I've given you, no?

All the best to you young lady and I wish you well

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Brief Answer:
Dr. CarolosSinger is THE MAN per Dr. XXXXXXX Daroff

Detailed Answer:
Nice to hear back from you.

I was wondering when you'd make contact with me again since in fact I do have a name for you who was referred to me by someone considered by most to be one of the premier neurologists in the country and indeed the world as he is asked on a regular basis to treat Royal Families overseas and such. I fortunate to have him as a mentor and continue to maintain contact with he and his wife even after 15 years post-training.

So before I answer your question for BOTOX let me introduce Dr. Daroff's recommendation for a Parkinsonologist of repute in your area: See BELOW-

On Wednesday, September 24, 2014 8:29 AM, XXXXXXX Daroff wrote:

XXXXXXX is THE MAN: http://uhealthsystem.com/doctors/profile/1168


Call 305-243-4000 or request an appointment online
Fax: 305-243-3321
Specialties: Neurology (Psychiatry & Neurology)
Languages: English, Spanish

BIOGRAPHY for XXXXXXX Singer, MD

Dr. XXXXXXX Singer is Professor of Neurology and Director of the Division of Parkinson's Disease and Movement Disorders, designated as a National Parkinson Foundation Center of Excellence. He received his medical degree from the Central University of Venezuela in 1972. This was followed by training in Internal Medicine at the University of XXXXXXX and in Neurology at the XXXXXXX Einstein College of Medicine Affiliated Hospitals. Dr. Singer received additional training in Electromyography and in Movement Disorders at the University of XXXXXXX Dr. Singer is board certified in both Internal Medicine and Neurology. He has been a member of the faculty of the Department of Neurology of the Miller School of Medicine/University of XXXXXXX since 1989. Dr. Singer's special interest is in the non-motor manifestations of Parkinson's Disease such as urological, cardiovascular and other aspects of this disease. He chairs the working group on "Non-Motor Manifestations of Parkinson Disease' of the Parkinson Study Group. He is a member of the XXXXXXX Academy of Neurology, the XXXXXXX Neurological Association, the Movement Disorders Society, the Parkinson Study Group, the XXXXXXX Study Group and the Dystonia Study Group. He also established the first Botulinum toxin Treatment Program for neurological disorders in Florida in 1990. Dr. Singer is planning further expansion of the Center's clinical, research, outreach and educational activities.


To your other questions:

1. You will likely still need to take carbidopa/levodopa even following BOTOX. It usually takes BOTOX anywhere from a few days to about a week to start working.

2, My long term experience with the use of BOTOX is much greater in the headache arena but I have tried it for other conditions as as spasticity, chronic pain, and facial/orbital dystonias. It has been very good to excellent as I would describe the medication.

3. You will wish to make sure your neurologist keeps to maximum daily recommended doses of BOTOX as beyond these amounts can result in harmful conditions.

If this information has been at all helpful in answering your question I would appreciate a small bit of written of feedback as well as a STAR RATING. I do appreciate your generous offering of the 4 STARS from a previous question I had the privilege of answering for you. I'm disappointed in myself for not having received your HIGHEST mark of 5 Stars but perhaps, this particular answer will meet that hurdle? Otherwise, I may not wish to say much to Dr. Daroff of how I helped you since he was also encouraging us during training to not just try to be the best but to be SURE that we were the best!

Also, if you have no further comment or question in this thread would you consider CLOSING THE QUERY on your end> This will signal to the network that the case is ready to be processed, archived, and credited/recorded for future reference.

Please feel free to contact me in the future on this case or any other by writing direct questions to me using the following link:

http://doctor.healthcaremagic.com/Funnel?page=askDoctorDirectly&docId=68474

This query required 26 min. of physician specific time to review, research, and provide final draft documentation for envoy.

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