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Ask the Doctor 2015 Number 2 (Apr/May/Jun)

Disclaimer: neither the BEBRF nor members of the BEBRF Medical Advisory Board has examined these patients and are not responsible for any treatment.

  1. QUESTION: My neurologist does a terrific job of controlling the contractions in my eyes using XEOMIN®. He does not inject below the orbital rim on the face. He also injects the masseter muscles, using an EMG for positioning, to control the repetitive clenching in the jaw. Unfortunately, somehow with those injections, I lose the ability to smile. My smile muscles become frozen, and my mouth looks distorted as well. Somehow, the toxin must seep down. I have tried keeping my head level, lying flat on my back for an hour after the injections, but that doesn't make a difference. The smile begins to come back at the end of the 13 week cycle. Do you have any suggestions as to what else we can try?

    ANSWER: This is a difficult problem and one that we are currently doing a study on. We are looking at the effect of botulinum toxin injections around the eyes on the smile. We have noticed this "frozen smile" with these injection even though we stay well above the orbital rim. The masseter injections may also be affecting the smile since the smile muscles live close to the masseters. One option is to have your doctor leave out any lower eyelid injections and see if that improves your smile. If not, it most likely is the masseter injections. If that's the case, you will need to discuss the amount and placement of those injections to try to avoid causing problems with your smile.

  2. QUESTION: Is it wise for new blepharospasm patients to refrain from facial/cranial surgery including such things as tooth extractions for a few years, believing it may spread to Meige or other areas? What about myectomy surgery - does myectomy surgery have a track record of dystonia spread?

    ANSWER: There is no evidence that any facial surgery will cause spread of the spasms. Surgery may exacerbate spasms temporarily. Myectomy does not promote spread. Some patients with Meige will find the facial spasms appear relatively exacerbated due to the relief of the spasms around the eyes from the operation.

    Andrew R. Harrison, MD, Director, Departments of Ophthalmology and Otolaryngology, University of Minnesota, Minneapolis, Minnesota

  3. QUESTION: I am reading Dr Daniel Perlmutter's book, Grain Brain, in which he clearly states that he, as well as Dr Hadjivassiliou of Holland have determined there is a link between neurological (specifically dystonia) diseases and gluten sensitivity/intolerance. He states there may be no other symptom besides brain or movement impairment - no celiac syndrome - but that gluten is still the cause of these inexplicable neurological issues. Do you have any knowledge and/or is anyone doing further work on these "leads." He gave a specific patient reference to a young man with general body dystonia who, upon doing a gluten free diet, has substantial and definitive decreases in his spasms.

    ANSWER: Yes, I am very familiar with this literature. The only link that seems clear between gluten and neurologic movement disorders is with ataxia. The literature is rather fuzzy, however, and there are all sorts of claims. These days gluten free foods are easily available, and anyone who is concerned can easily try such a diet for a few weeks and see if it might be helpful. There is no link between gluten and blepharospasm as far as I know.

  4. QUESTION: Can medication given for Parkinson's disease contribute to developing dystonia?

    ANSWER: There are many inter-relationships between dystonia and Parkinson's disease. Patients with Parkinson's disease may have some dystonic movements even without any medication. Then there might be some dystonia seen in association with medication, but in many different forms. One type of dystonia is an early morning dystonia associated with the medication wearing off during the night. The most prominent movement "caused" by medication is called dyskinesia, and these movements are usually more flowing than dystonia but can be dystonic.

  5. QUESTION: Has there ever been any sort of study of people who have gone into remission? To me, remission means "it just went away". I don't think of remission as "since I stopped using household products with chemical XXX in them I don't have symptoms anymore."

    ANSWER: There are no good data on remission. Should this happen, generally the patients just disappear. Remission does happen rarely, but, of course, the blepharospasm might well return sometime later. I recall one patient with focal hand dystonia who went into remission for about 30 years, and then it returned.

    Mark Hallett, MD, Chief Human Motor Control Section, NINDS, NIH, Bethesda Maryland.

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