Brief Answer:
Left leg dystonia

Detailed Answer:
Good afternoon. My name is Dr. Saghafi and I am a neurologist in the XXXXXXX OH region of the world. Greetings to wherever you are and I'm very sorry for your problem of dystonia in the left leg.

I understand that carbidopa/levodopa gives you a maximum of 2 hrs. of relief. Please share with me a bit more history as to what the workup has been for your dystonic leg. What other medications have been tried aside from carbidopa/levodopa and have you seen a neurologist about this problem?

Typically, the workup for this sort of problem would start by recognizing that laboratory findings in some cases can lead to a quick and easy fix of the problem. So, we usually will check things such as electrolytes especially, Magnesium, calcium, sodium, and potassium, Zinc, etc. Most of the time these are all just fine so then, we move to thyroid hormones. Then, we have to also check medications you may be on or newly started since often medications themselves can cause side effects which can include, muscle cramping, and spasms.

If those are all negative then, it is possible that an MRI of the brain could reveal something, especially if the problem is progressing or getting worse. However, most of the time such an imaging study is of little value in the face of an otherwise healthy and normal neurological examination so we default to simply treating the problem with a medication that we think would be most likely to help.

Please pass on to me the complete list of medications that you've tried and have not worked for this problem.

How about things such as caffeine intake, sleep habits, insomnia, and other lifestyle parameters (alcohol consumption, smoking cigarettes, etc.).

Has BOTOX ever been suggested for the problem?

If you've gained some more insight into your problem then, I'd very much appreciate a written piece of feedback as well as a STAR RATING of my response to indicate your approval. If you also have no further questions or comments would you please CLOSE THE QUERY which will allow the system to process and archive the information for future reference.

This consult has taken 44 minutes to review, research, and put into final draft documentation for envoy.

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Brief Answer:
Dystonia in leg

Detailed Answer:
Good afternoon and thanks very much for the information you supplied.

I'd like to address the information on BOTOX and bone damage. I am a neurologist who injects BOTOX in my patients for headaches as well as for dystonia and spasticity on a regular basis. I've yet to find a patient who's amount of detriment in terms of bone demineralization (and we have checked for that based upon animal studies which have been published on the same) has been of any significant value compared to the benefit of why we were injecting the patients in the first place for their condition. There are no data in human subjects in the medical literature regarding the effects of BOTOX on bone demineralization. There is 1 single human study which began in Feb. 2013 and was slated to terminate in March of this year, however, I am not aware that they have either provided preliminary data, presented a poster anywhere, or published their final results.

The information you may have been given regarding affectation of bone may be coming from rat and mouse studies whereby very large quantities of BOTOX were used compared to the amount you would likely receive for cramping in the calf. Test animals in some studies had their muscles entirely paralyzed and received injections on multiple days during the testing period. For your problem, there would only need to be injections given every 10-12 weeks and the muscle would be in no way paralyzed although there may be some mild weakness noted about 1 week after injection which would resolve within several days.

Therefore, in my opinion there is no significant cause for worry in terms of BOTOX in human subjects when given in quantities necessary to control dystonia of muscle groups on an intermittent injection schedule. BOTOX is considered the gold standard of theapy for dystonia and spasticity when it comes to neurological conditions.

However, to answer your question about alternative medications for dystonia the next best class of meds to use after BOTOX in my experience would be the benzodiazepines which include drugs such as valium ativan, Klonopin. The one which has worked the best for my patients with the least amount of side effect and lowest doses to response is Klonopin. Anticholinergic medications such as artane, cogentin, and Parsitan have a lot of side effects and are only modestly effective. I rarely if ever use them.

Baclofen is commonly employed but again my bias on it as an effective ORAL medication is that I don't use it often...more frequently than cogentin, but less frequently than Klonopin. Side effects can be intolerable in some patients. Now, the intrathecal pump version of Baclofen works like a charm when placed and adjusted by a skilled physician and pump nurse. However, unless it is absolutely a confirmed and final decision that your cramping of the calf is something that will not respond to anything else (including BOTOX)....I would hate to see you get surgery because if the medication doesn't work as well as hoped then, you've got a device in you now that you don't need. Not a huge problem but all the same....I only recommend pumps to be implanted when we are out of options.

Parlodel is another older drug which still retains some favor among physicians. I don't particularly like it because it's a dopamine DEPLETING agent....which is EXACTLY HOW IT WORKS. I read your thoughts on increasing dopamine and that's not a bad thought IF the dystonia were truly known to be a PARKINSONISM associated with PARKINSON'S DISEASE. Doesn't sound like that was the case in this situation since carbidlpa/levodopa isn't really helping. So again, dopamine depleting agents are a viable alternative but I wouldn't reach for them before either BOTOX or KLONOPIN simply because of the risk of causing something you DEFINITELY WON'T like called tardive dyskinesia if the dose is overshot for any reason.

BTW, please steer clear of Flexeril, Robaxin, Robaxisal, Tizanidine.....useless in my opinion for your condition as you've described it.

If you'll tell me what area of the country (aside from zip code....give me a major city...) you are in I can try and give you a name or two. I'm a member of the Movement Disorders Section of the Academy of Neurology so I'm sure I either know someone or can solicit names from the secretary of our section.

Of course, if you'd ever like to travel to XXXXXXX OH....."The Best Location in the Nation!" LOL....I'd be happy to help you with your problem.

If this information has been of use to you could you do me a favor by leaving a bit of written feedback with a STAR RATING....love them STARS! And as well, if you have no further questions or comments CLOSING THE QUERY would be greatly appreciated so that the question can be marked as processed, archived, and credited for future reference.

This query required 60 min. of physician specific time to review, research, and compile for final draft envoy.

Cheers!

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Brief Answer:
Awaiting a response from someone who can help

Detailed Answer:
I've put out some feelers to some people who are better connected than I to the XXXXXXX area and am waiting their response. I will alert you as soon as I've heard something from them.

In the mean time....have you had an EMG? Have you had an MRI of the brain as well as the lumbar spine? Have you had a PET scan? And finally, one really long shot diagnostic test that I would consider doing if everything else were negative would be an EEG and preferably if were being done at a time when you were having the spasm or dystonic posturing of the leg. The reason being that a simple partial seizure involving an extremely small area of the brain that would be specific enough to activate the calf muscle could conceivably occur without altering one's mental status in the least.

Please respond back to this message so that I will be able to write to you with some options of people that you can make contact with to continue a workup.

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