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Posted by: dana ® 09/02/2010, 10:05:33 |
Hi all!
My daughter has double diagnose Dystonia with blepharospasm and Myasthenia ,but I think it is rather one rare disease with just symptoms of weakness and spasms.I have read that 100% patients with myasthenic ptosi has relief of ptosi after putting ice on the ptotic eye for two minutes.So we decided to make it at home. So we prepared a piece of ice but After about 30 second she started to blinking ,like crazy and had some kind of blepharoclonus (very fast blinking about 150/min and it lasted about 5 minutes .Then come back ptosis(droping eyes).I don't know what to think about it and I want to ask you what happens if you put on your eyes a piece of eyes or ice-pack...Is it a trigger for your blepharospasm?It is very important for us to know it becouse it can help in discoverig a truth diagnose.We are disperate really,becouse I think it's very important to know the real diagnose .So if you are so kind ,please answer me what happens if person with BB put an ice pack on your eyes for minute or two..thank you for reading this. greetings from Italy dana |
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Posted by: JetHart ® 09/02/2010, 11:19:41 |
Hello Dana (and daughter!), I have used an ice pack around and on my eyes at different times. There has been no increase in symptoms at any time from the ice. But, as we keep learning here on this website, everyone is different in their response to various treatments and medications. Hope you can find out what's going on soon! Joellen |
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Posted by: afisher ® 09/02/2010, 11:41:48 |
I use Ice Packs to get relief when my eyes are sore. Doesn't seem to impact my symptoms. When I was at an eye doctor a couple weeks ago, he mentioned there was an ice test for Myasthenia ...but I thought he said the ice would make the symptons go away, not worsen ... although I could be wrong. Andrea |
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Posted by: torre ® 09/02/2010, 13:01:22 |
Dana, Sorry your daughter has this double diagnosis. Here's what I can add.....not sure it will be a lot of help though. Regarding the ice test: Yes, ice is supposed to make ptosis of MG better. Not sure why exactly....but I've read that several different places over the years. Perhaps in your daughter's case, the ice acted as an irritant or "trigger" for her BEB and made it temporarily worse....? During the six years I was searching for an accurate diagnosis, I thought perhaps I had MG and tried ice on my eyes which had no effect either way....no increase of decrease in blinking. I was eventually mis-diagnosed with ocular MG by a local neurologist based on the results of one repetitive nerve stimulation study, tried a trial of Mestinon (a drug used to treat MG patients), but no help..... because I didn't have MG. Several months later, Mayo Clinic in Rochester, Minnesota did very specific tests for MG, ruled it out, and diagnosed BEB....which two other docs (one neurologist and one oculo-plastic surgeon) have since confirmed. I didn't know that MG and BEB could co-exist in the same person until last week when I talked with the oculo-plastic doc (Dr. Soparkar in Houston, TX). He sees a lot of BEB patients and said that he has several patients that have both MG and BEB! I told him I thought that having both was really strange... at which point he looked at me like he thought that amusing. Well, I still think having both MG and BEB is somewhat unlikely, and a little strange, although can concede the possiblility. (You don't know what you don't know!) Having said that though, I think that people with BEB often wear our muscles out with all the blinking and spasming to the point where we have muscle weakness from the over-activity....which may show up on some muscle tests as a "decremental response"/weakness that would lead the doc to assume MG....as it did in my case. Did your daughter's doctors test her for all four MG antibodies and perform muscle testing specific for just MG? The tests I had at Mayo Clinic were much more specific and involved than the tests I had locally (Austin, TX). Perhaps a second opinion (or two) might be helpful? I sympathize with your and your daughter's frustrations and wish you accurate answers soon. Best, ~Torre |
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Posted by: dana ® 09/02/2010, 13:25:56 |
dear Torre its very very interesting what you wrote about your experiences with diffrent drs and MG diagnosis.My daughter is seronegative (acetycholine and MUSK antybodies and I don't know any other antybodies..)So one can have both myasthenia and BB...And for us it will be extremely intersting to know if the ice triggers spasms in other persons.For now 3 persons wrote "NO",I hope other will answer too.I love this forum,just american dystonia forum is the best in the world,becouse you are so helpful!
kisses dana |
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Posted by: torre ® 09/02/2010, 13:43:56 |
I thought there were only two MG antibodies until I went to Mayo. I suppose there are two "common" ones.....
Seems like many posters here have been mis-diagnosed with MG on the way to diagnosis of BEB. ~T |
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Posted by: dana ® 09/02/2010, 13:10:40 |
yes you are right ,ice test for myasthenia should improve ptosis,but we have to discover why Katerina (my daughter)has reaction like this ,I mean blepharospam after only 30 sec of ice on her eyelids.Im sure our neuro will be very interesting to know how react other BB persons.If the ice doesn't worsen blepharo it does it mean that maybe she has another problem ..and in this way all of you can help us to be closer to real diagnose.
greetings dana |
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Posted by: hasty ® 09/02/2010, 13:31:50 |
What type of ice pack was it? Was it regular ice cubes? Crushed ice cubes? Homemade ice pack in a plastic bag, with towel wrapped around it? Thicker ice pack bag you get in a store? One of those plastic packs - no ice - that you freeze & apply? Perhaps if they were regular size ice cubes, they were too heavy for the eye, & caused spasms. Don't mind my stupid questions, I know you Moms know best! Ciao, bella! Modified by hasty at Thu, Sep 02, 2010, 13:40:19 |
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Posted by: dana ® 09/02/2010, 15:55:57 |
it was a little cube of ice wraped in a kichen mild paper,
there are not stupid question where we talk about our condition, greetings Dana |
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Posted by: Anita in Ohio ® 09/02/2010, 15:52:11 |
Dana,
I will talk stricly about blepharospasm. Blepharospasm is a focal dystonia that effects both eyes. People have had different degree or severity of the eyelids spasms to the point that the eyelids may close totally rendering a person blind. I question you when you talk about ice - are you using regular ice cubes on the eyes? To me, this would be very heavy. I do use an ice mask that is filled with a gel that I keep cool in my refrigerator.This was purchased at one of our drug stores. When my eyes are tired or hurting, I do use this on my eyelids and it gives me relief. Normally ptosis(drooping eyelids)may develop after botulinum toxin injections, but this will leave in time, could be one month or longer. This should be reported to the doctor who did the injections. What part of Italy are you from? I happen to be of Italian descent. I know we have several doctors that treats our disorder in Italy. Do you mind sharing the name of the doctor who is treating your daughter and where you live? Bene Fortuna! Anita Croce, North Central District Director, BEBRF |
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Posted by: tatia ® 09/02/2010, 15:59:30 |
Hi Dana, Paramyotonia Congenita is triggered or made worse by cold. It can cause eyelid and other spasms. In fact, the way to increase the chances of an EMG catching it, is to immerse the arm in ice water to provoke the symptoms. Paramyotonia Congenita is also associated with periodic paralysis, which causes weakness. I'm no doctor; this is just a suggestion for one thing you could look into. I think I've seen your posts on the myotonia message board, so maybe you've already considered this. But it can be difficult to definitively rule out this disorder. Has she had DNA testing for the genes associated with Paramyotonia Congenita? Has she ever had an EMG where they chilled the muscles? There is a woman who used to post here, whose young son has these types of issues. Please email me if you want her contact information, I know she would be happy to talk to you.
Lajoie described a family with many affected members. (1) Hudson reported that in 17 affected persons in five generations of one family, symptoms of PMC overlapped with hypokalemic, eukalemic and hyperkalemic periodic paralysis, with myotonia congenita and with myotonic dystrophy."
I also have issues with both spasms/cramping and weakness, and like you, believe it is all related to one disorder. It affects my whole body, but my eyes are the very worst. Other options besides PMC that can cause both spasms and weakness are VGKC antibodies, mitochondrial disease, and episodic ataxia. The ice issue, though, is what made me think of PMC. If you've found any other possibilities in your searches, please tell me about them. Best wishes for you and your daughter,
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Posted by: dana ® 09/03/2010, 15:15:44 |
Tatia ,I have read about paramyotonia and it is similair to my daughter condition ,the only difference is a lack of ptosis in paramyotonia,but who knows..13th settember we have a neurologic visit in neuromuscular division so I will let you know what they say.I will tell about BB patients experiences with ice cube on the lids(no reaction as you said).
thank you for links big hugs Dana |
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Posted by: tatia ® 09/03/2010, 18:40:42 |
Hi Dana, Please don't let the ptosis stop you (or the doctors) from investigating paramyotonia. Many people who have PMC also have a disorder called hyperkalemic periodic paralysis. They are both caused by a mutation to the sodium channels. Periodic paralysis can cause weakness or paralysis of the whole body, or just one body part (such as eyelids) I asked the other lady, she and her son both have the problems, and they cannot tolerate ice on their eyes, plus they also have issues with ptosis. She said she would love to speak with you if you ever want to hear about PMC with weakness issues. Here is an FAQ page that talks about the link between these two conditions.
Hugs to you too. Tatia Modified by tatia at Fri, Sep 03, 2010, 18:43:27 |
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Posted by: dana ® 09/04/2010, 01:12:00 |
I want absolutely to ask the doctor about paramyotonia ,he is specialist in myotonic disorders ,Im preparing photos and videos of critical moments.I would like to talk with a lady who has the same problem in her family.We are tired to look for a right diagnose ,we saw till now many neuros ,professors.But they have never seen a person with weakness, paroxysmal dystonia dystonia with blepharospasm ,oculogyric crisis.So Im very very gratefull for your support.
take care Modified by dana at Wed, Sep 08, 2010, 13:36:32 |
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Posted by: pdb ® 09/02/2010, 18:06:44 |
....just adding myself to the list of those for whom ice packs make no difference to the blepharospasm. Mind you, I don't have spasms when lying down, and that's the main posture I adopt when using an ice pack. So a question then is, does your daughter have the blinking problem when lying down? That would be unusual for BEB, I believe. Good luck in your search peter |
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Posted by: Shirley Barr in New Mexico ® 09/02/2010, 18:57:38 |
Ice paks make no difference in my symptoms either. Icing neither worsens or improves my symptoms. I'm curious Peter, about your symptoms going away when you lie down but I will start a new thread regarding that. Shirley in New Mexico Modified by Shirley Barr in New Mexico at Thu, Sep 02, 2010, 19:04:22 |
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Posted by: Anita in Ohio ® 09/03/2010, 11:12:57 |
Shirley, Regarding Peter's remark about when he lies down, symptoms go away - With my blepharospasm and I have heard others with blepharospasm say that when they close their eyes and go to sleep, the spasms leave. Where those that have hemi-facial spasms, I have been told the spasms don't leave when lying down. Regarding Apraxia, I have not heard if the spasms leave when lying down. We are all so different, but it would be interesting for you to start a new thread. Hope your doing well. Anita Croce |
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Posted by: hasty ® 09/03/2010, 11:49:06 |
Anita, if I'm not mistaken, Shirley does have a separate thread about it alittle further down the page. |
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