need information, please


Posted by Cinthia Ritchie , Aug 01,2001,03:34   Archive
I'm a 42-year-old woman who has had spasmodic dysphonia for almost 25 years and have been noticing light facial spasms? flutters? around my eyes and cheekbones, particularly around my left eye. I'm wondering if this is what it feels like at the beginning phase of blepharospasm or hemifacial spasms. I have an appointment with a neurologist in two weeks, but since I live in Alaska, I'm not too hopeful: there aren't a lot of doctors up here versed in dystonia.
I would appreciate as much information as possible; I have read that 30% of people with SD will go on to develop other forms of dystonia and this is, excuse the expression, scaring the crap out of me.
Thanks so much!
Cinthia Ritchie



Recommend Current pageAuthor Profile
Replies to this message


Re: need information, please

Re : need information, please --- Cinthia Ritchie
Posted by Lynn Yarbrough , Aug 02,2001,12:44 Top of Thread Archive
By all means get in touch with the BEBRF home office, which maintains this site, and get as much info from them as you can. They are very cooperative and empathetic.

Since you have had SD for a long time, you know what dystonias feel like, and that they are not life-threatening, so don't be afraid. The new feelings you are experiencing may not be anything but stress (living in Alaska sounds llike it would do that to me) and, AT WORST, BEB or HS, and you already have the emotional tools to deal with them.

My whole life experience for the last 40 years, it seems, has been in stress management, and I believe it has saved my job, my marriage, and my life.

--- Lynn




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: need information, please

Re : need information, please --- Cinthia Ritchie
Posted by Delaine Inman , Aug 02,2001,21:47 Top of Thread Archive
Lynn gave you good info...remember what ever it is....you can handle it. Many of us have one eye that is worse than the other and we have BEB and not hemifacial spasms. My left is worse and the right just goes along for the ride after awhile. If you have been handling dystonia for many years this may just be the next phase & you will learn to cope and survive. We are here for you and hopefully the doc will know how to treat you no matter whatever it is. Hang in there or let go....whatever works. Strong arms will catch you or give you strength.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Strong arms

Re : Re: need information, please --- Delaine Inman
Posted by Jaelline Jaffe , Aug 03,2001,03:08 Top of Thread Archive
Delaine, in reply to Cinthia in Alaska, you said "Strong arms will catch you or give you strength." What a terrific image! I am touched by the sound and feel of that.

When I was first experiencing symptoms, one of my misdiagnoses was Sjogren's Syndrome. I got on their mail list and spent a lot of time reading, writing, being helped, and helping others. It was my first experience of an online support system. Since I am generally a support giver (I'm a psychotherapist) and a pretty strong person, it was unusual for me to be in the position of needing help. Before I was correctly diagnosed (ie: before Botox), I was a basketcase. I could hardly drive (not a good thing here in LA) and could hardly keep my eyes open (not a good thing for a therapist who is used to making eye contact). I had a couple of wonderful guardian angels who just showed up in my life: a friend who drove me everywhere and even took me on a camping trip, and a colleague who happened to move nearby who was willing to drive me 25 miles each way to work and then let me TAKE HER CAR to go between 2-3 different locations where I needed to be for work!

One other way I was held up by strong, caring arms came during that first horrible year. I had gone from doctor to doctor, and diagnosis to diagnosis, and rarely complained or unburdened myself on others -- it was not in my life script to do that. So one of my friends asked me if I had grieved the loss of my former sense of myself. She and some others from my "spiritual family" created a Wailing Circle. I sat in the middle and they surrounded me (we were on a big bed) and we pounded on the mattress and yelled and screamed and cried and wailed ... and they said all the irrational things that I had felt but had never vocalized (why me? it's not fair. what will my elderly parents do without my full ability to help them? what about my daughter? how will I ever find another relationship? etc etc). After an hour or so, we were all exhausted, and I was all cried out. It was a tremendous relief to feel so totally accepted and supported ... and then I could go back to not complaining, but having really been able to do so for that hour without any judgment from myself or from them.

So all this is a longwinded way of saying thanks to all of you, and appreciating the blessings of friedship in its many forms. We are lots stronger when those strong arms are there waiting if we need them.

Hope to meet many of you in hot, dry, bright and sunny Scottsdale.

jj in LA




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Strong arms

Re : Strong arms --- Jaelline Jaffe
Posted by kathy , Aug 03,2001,09:55 Top of Thread Archive
i am just starting to realize how much worse i am now than before. it's kind of a shock to your system evry time your eyes get really bad. i know that's not very positive.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Strong arms

Re : Re: Strong arms --- kathy
Posted by Delaine Inman , Aug 04,2001,10:06 Top of Thread Archive
Yea it is shocking and frustrating and frightening at times and I know the feeling....but you will be ok....not the way you want it to be but the way it is, and you will cope even when you don't know how when you feel those feelings. So don't give up. Keep seeking answers from the doctors....even if you have to change docs and from the Spirit within through prayer or sitting still and listening for peace and calm. One thing that works for me is to acknowledge the negative things I feel then start acknowledging some positive things in my life....things I have to be thankful. The antidote for negative is positive thinking and actions. Let the fear & shock pass through you, don't allow it to stay stuck in you. If you can't do that, then ask for help from friends who will support you or from professionals who can help you.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Strong arms

Re : Strong arms --- Jaelline Jaffe
Posted by Delaine Inman , Aug 04,2001,09:52 Top of Thread Archive
This weird syndrome called BEB/Meige/Dystonia progresses for some, but not for all, symptoms go up and down like a roller coaster ride. I too am a caretaker/caregiver and it was hard for me to need to be on the other side of the spectrum. I can certainly identify with everything you said and we all have to grieve our losses of the old self to the present self. This experience has helped me set my ego, pride, and former self aside...the parts that no longer serve me. I finally learned to let go of the old self, but that certainly did not mean I gave up or lost hope. I've just learned to stop struggling and to trust that image of strong arms holding me and giving me strength to handle whatever the day brings. God sends his arms & strength through other people as well as from deep within us. I'm still turning over ever stone to find the key to a healthier self...MIND/BODY/& SPIRIT. I believe healing is always possible even when the doctors say there is no known cure or cause.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Strong arms

Re : Strong arms --- Jaelline Jaffe
Posted by Ann Doyle , Aug 04,2001,10:31 Top of Thread Archive
JAELLINE, A friend of mine has Sjogren's and wanted me to find out what I could on the computer. Do you know of some sites or regular mail addresses? WE live in Ky. and she goe's to a doctor in Tn. but doesn't know anyone else with it. Ann Doyle



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Strong arms

Re : Re: Strong arms --- Ann Doyle
Posted by Cynthia , Aug 04,2001,11:21 Top of Thread Archive
I have experienced www.google.com as a quick search engine where I can usually find what I want. Go there and type in Sjogren's and multiple replies emerge. Hope this is helpful.
Cynthia in IL who's getting the grandsons (8 and 12) tomorrow for a week of fun!



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Sjogrens site

Re : Re: Strong arms --- Ann Doyle
Posted by Virginia , Aug 04,2001,12:55 Top of Thread Archive
This site is helpful for those with SS. It has a list that you can subscribe to to communicate with other Sjogies, as well as advice and links. When I first began to have symptoms of BEB, SS was considered, so I tried to find out as much as I could about it. Since I had (and still have) dry eye and mouth issues, it was interesting to me.

Virginia in AL Related link: http://www.dry.org




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Sjogrens site

Re : Sjogrens site --- Virginia
Posted by Ann Doyle , Aug 04,2001,15:31 Top of Thread Archive
Thanks Jaelline and Virginia. Between the two sites, we can keep
busy looking and learning forever. I really appreciate it and so will my friend.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile