Re: Jankovic visit
I'm sorry ken. I'm glad you remember her so well.
Re: Jankovic visit/Sad Loss of Family member
Dear Ken, my deepest sympathy on the sad passing of your dear stepsister - such a young age and gone so quickly after her diagnosis. I hope you will find comfort in other family members and friends.Re the meeting with Dr. J. - at least you tried to see what he would say and, if you ever need to see him again, perhaps won't have to wait so long another time. Take care. June in Toronto (beb/meige)
Re: Jankovic visit
Ken, please accept my condolences on the loss of your sister. I'm sure she'll live on in your heart throughout your life time.Sincerely,
Christel in Ca.
Re: Jankovic visit
I'm so sorry about your stepsister. I remember you telling me at the meeting that she was just diagnosed. My prayers goes out to you and your family. I saw Dr. Dewey at UTSWMC last summer and he was with me for at least 30 min and maybe longer. He is a movement disorder specialist.
Kelly
Re: Jankovic visit/Dewey
Exactly, I saw Nick Hogan, an eye specialist at UTSW and I was so impressed with the amount of time HE spent. What did you think of Dewey? thats who Hogan wants me to see for meds.
Re: Jankovic visit/Dewey
Dewey told me meds were ineffective and wanted me to ween off of my klonopin. I did try weening but I could tell that it was helping some so I didn't follow his advice. I don't know what he would be willing to prescribe.
Re: /Dewey/meds/license
That's interesting, I wonder what his approach would have been if you had continued to see him. I guess Botox only, I didnt know he did injections. By the way, what is the status of your driver’s license that was revoked due to BEB?
--modified by Ken C. at Thu, May 16, 2002, 02:23:07
Re: /Dewey/meds/license
My license is still in limbo I guess. I met with a DPS officer in March for an interview. He was going to recommend that the medical advisory board in Austin on restrict and didn't feel that they would revoke. He told me I should receive some paperwork for myself and doctor within a month and I haven't heard a word from them. I don't know if they read his report and have chosen to do nothing or if they are just behind. At this point I am continuing to live as "normal" not driving more than about 2 miles and only when I have to. Aron got to go to a tea party with Cory yesterday because I couldn't drive her but life goes on...I talked to another member of the support group on Monday and she is seeing Dr. O'Sulleabhain at UTSW for beb/meige and she is doing decent and was just approved for SSD. His number is 214-648-7964. From my experience it seems that the beb is harder to treat when you also have meige or apraxia. Kelly
Re: /Meige
Kelly you said: From my experience it seems that the beb is harder to treat when you also have meige or apraxia. I Agree, Jankovic doesn’t seem to use the term Meige. The first paragraph in his paper he states: "Although the eponym "Meige's syndrome" has been sometimes used to designate idiopathic cranial-cervical dystonia, this term is not appropriate because Talkow in Germany and Wood in the United States described blepharospasm and orofacial dystonia several decades before the 1910 publication by the French neurologist's report. It was not until the 1970's that blepharospasm was recognized as a form of focal dystonia." So is oromandibular dystonia the same, similar, or something totally different than Meige? Reading the second paragraph of Jankovic, I would be considered to have Meige. I’m wondering if Apraxia isn’t involved in my case as well. It’s hard to know when you can only get 10 or 15 minutes at a time with a doctor. Ken
Related link: http://www.blepharospasm.org/99jankov.html
--modified by Ken C. at Thu, May 16, 2002, 12:34:05 --modified by Ken C. at Thu, May 16, 2002, 12:35:22
Re: /Meige
Thanks for that informative link! The best bit is where it says that there is hardly ever a psychogenic cause! I want that printed out in letters a foot high to give to some dense medical staff that I have been unfortunate enought to be judged by!Claire- just returned from a frustrating windsurfing lesson!
Re: /Meige
From what I have read thru the foundation literature, Meige is the combination of BEB and Oramandibular Dystonia. It is difficult to inject in the lower facial area without causing difficulty swallowing, smiling, eating, etc. I receive my injections deep into the massitor muscles to weaken them so that when I clench, at least it isn't so hard that it causes pain in the neck and joint. I only have mild chin thrusting and throat and tongue spasms but alot of people REALLY struggle with this.
Re: Jankovic visit/Dewey
I have generally found that we know our bodies and how they react and
it's difficult for me to have a doctor make a blanket statement such
as meds being ineffective. Our responses are all different; hence
the varied results. There is a "school" of neurologists who will not or do not like to prescribe benzodiazapines (klonopin) for this disorder.
My first neurologist told me he has found that the long term effects
are generally negative--referring to memory problems and the body's eventual dependence upon them. He said once he prescribed klonopin for
me I'd always be on it. Maybe that's an old school of thought but I
think I recall Delaine mentioning it took awhile for her to find a
neurologist who would prescribe klonopin for her and she seems to be doing well with it. I am taking a relative benzo called Serax and am lately finding it not to be as effective at current dosages. I am also having trouble stablizing my weight as I am gettng too thin-- the
my nutritionist believes my body is in fight or flight too much of the time and it's using up the protein, etc. too rapidly so I am losing
weight. So who knows. We all have to decide the best way of coping with this. Just my 2 cents worth. Joanne M. San Diego, CA
Re: Jankovic visit/baclofen/ ken
Ken , sometimes it helps to post a subject with the drug or other thing you want info about in the subject heading. There are a lot of new people on this support group and it helps to facilitate a faster response. I , for instance , am having very bad side effects from my injections and can only read a little bit at a time on the computer right now.
Re: Jankovic visit/baclofen/ reading problems
Ill try to keep that in mind. Sorry your are having side effects with the injections. I posted a web site that has free software that will read from the screen for you, just cut and paste the text. Some might need a little help if you’re new to computers but it might help others, especially with long emails. Here is the link, just do the free one, although the version you can buy sounds even more like a real person. http://www.readplease.com/Ken in DFW
Re: Jankovic visit/baclofen/ reading problems
Sounds very interesting , ken. I would have to have someone help me figure this out, I'm sorry to admit that I don't even know how to cut and paste yet; someone tried to show me how once , but that certainly is not enough. What do you mean by a real person? My eyes are better this morning, I normally don't spend too much time on the computer at one time as it's too hard on my eyes.
Re: ReadPlease software
The computer reads the text for you over your speakers. The pay versions just sound even more like someone reading to you instead of a computer voice. I’m not promoting the software, I’m just suggesting the free version. That’s all I have. Ken
Re: Jankovic visit
Ken, so sorry to hear about the loss of your sister to Cancer. I lost a brother in law several years ago who lasted just about the same amount of time. He was the same age also. That is why I don't complain as bad as this darn disease is. It is not terminal. God Bless and I will say a special prayer for her. Hope that you can make it to the conference in Houston............Alan
Re: Baclofen
Ken, sorry to hear of your loss of your stepsister. That is very sad news.I've tried Baclofen and couldn't tell that it did anything for my symptoms. To tell you the truth, I don't remember anybody saying that Baclofen has helped them much with their BEB in the three years that I've been on this bb. Many have tried it but I don't remember any positive feedback on it. I know that it is always talked about in the literature and at the conferences but not much has been mentioned on this board about it.
Anybody out there that has good results with Baclofen? Shirley in Arkansas with BEB and Apraxia
Re: Baclofen
It helped with my jaw clenching. I couldn't see that it did anything else and I stopped it. I probably could have tried a higher dose, but didn't want to sleep my life away. We were trying it to see if it would help the breathing problem.Virginia in AL
Re: Baclofen
I tried Baclofen at one time, and did not see any results. Clonazepam works best for me (and zoloft). Mary
Re: Baclofen
That’s what I thought, I went in not expecting much and I wasn’t disappointed. Keeps me more on an even keel. The Botox hasn’t helped a lot with my driving, I wasn’t surprised about that either, About 3 days after was pretty good but I would say overall I’m only 20% better in the eye dept. But now I have the nose scrunching thing going on, its just more prevalent now. That, and the shallow breathing.Ill probably try the Baclofen for a while but I’m pretty much anti-meds Ken
Re: Baclofen
My nose scrunches so badly that I dread the Botox and sometimes go too long and the hard painful squeezing returns and then I can't get there fast enough. One of those frustrating things we deal with all the time. The Clonazepam at a very low dose of 1/4mg helps me and doesn't make me too drowsy. The driving is still only on good days and for short errands and still stressful no matter how much or often I get Botox.
Re: Baclofen
I tried Baclofen several years ago and it made me feel pretty queazy after only a couple of weeks and didn't seem to help. I just quit taking it and I did get major rebound spasms so taper off. Dr. Merritt injects me on each side of my nose and it really helps the nose scrunching and the throat spasms.
Kelly
Re: Baclofen
Kelly, I was interested to hear from this post how the injections on either side of the nose help the throat spasms. Do you know how many units of toxin is in each injection? I got them there the last few times and no relief from the throat spasms which seem to be affecting
my breathing. Maybe the neurologist has not hit the best spot! Glad it's helping you. Joanne M. San Diego, CA
Re: throat spasm
I receive 100 units total but I don't know how much he injects in that location. My guess would be about 5 units since I receive a total of 18-20 injections. Several years ago I told him that my nose would spasm and immediately afterward my throat would spasm. He said there is a nerve that connects the two and began injecting me on either side of the nose maybe 1/3 of the way down from my eye. It has helped the frequency of the spasms.
Kelly
Re: Baclofen/ken
See Ken, this is what i mean about how some people can answer you better. I guess I don't understand why you wanted to see this particular specialist, for a second opinion? Don't the doctors share info on things?
I certainly can't get by on the botox alone and can't even remember if ever. I think most of us do have to take meds to control the spasms or other aspects of these disorders.--modified by Kathy in Atlanta at Wed, May 15, 2002, 10:59:48
Re: Baclofen/ken/trip to Houston
Kathy, you are absolutely right that this board has a wealth of information. However, as far as doctors, and believe me I have seen many, they do NOT have ALL the information. After you read this board for a while you will see that this disease/disorder/syndrome whatever, is very difficult to diagnose in the early stages and many times misdiagnosed for several years. The reason I went to Jankovic is to get one more perspective from someone who is supposedly the Guru of Dystonia and the like. I’m sure you know he is leading the conference in August. The trip was no skin off my back and I have no regrets. It cost me a car rental and a bar tab at the Chilis in the airport.Ken in DFW who is about to go out and soak up a few rays by the pool!
re medication/ken/joint pains
here I go again, ignoramus that i am here in Scotland,...Ken where is DFW, please? You are right, this board is a wealth of information, and not just about blepharospasm!
I have never had any medication mentioned to me by any doctor, and am a wee bit concerned about the breathing problems people are mentioning. Is this what I can expect later?
On the plus side i did drive my car for 2 miles last monday evening for the first time for 6 months. I felt my eyes closing after 0.5 mile but I remembered reading about singing out loud as a sensory trick to keep them open. And , do you know, it worked!!! I sang the most awful rubbish as i can never remember the words to songs, but who cares that i sang about red cars passing by me with four wheels and a big fat womman driving with a pony tail and a kid in the back who had no restraint, and yes, there was also a dog bouncing around...my own individual operetta.....!!! I drove into my new extended driveway and burst into tears of emotion at having managed it. I was so happy I was euphoric. But my husband,ever practical, who had been following me came up and said,... "Why didn't you park a bit closer to the wall?...."
MEN!!!!
I haven't had the courage to drive again without backup, but that day is coming...
i talked to a woman yesterday who is 74 and she had all sorts of neurological treatment in Spain, including electric shock treatment (!!!), until her diagnosis years later for Blepharospasm, 3 months after her husband died. isn't that awful? However she is fine and getting on with her life and puts me to shame as she gets on buses, something I am frightened to do. Perhaps it is because i have driven a car for so many years and find that i am thrown about inside buses when i have gone in them that makes me so nervous. And that was when I was fine! How do other people manage to get about? do you use public transport?
Also to all thos e people who replied about joint pains i want to say thank you. I couldn't reply at the time and now I cannot go back to reply to them. but I am very sympathetic to others who experience this too. it is not too obvious whether arthritis is also a condition with Blepharospasm or just increasing years. But to have both at once is a pain!!!
Pippa
Re: DFW
DFW is Dallas FtWorth, Texas. I guess I could just say Dallas but I really dont relate much to that Big City mentality. Dallas is like the New York of the South. A nice place to visit but I wouldnt want to live there. Nothing against NY of course. I actually live in a large suburb called Flower Mound. Click on the link below to see my subdivision. (address slightly changed to protect the innocent) Im in the lower left cul-de-sac. Elementary to the left, Zoom out and see DFW airport below. How's that for a detailed answer! http://www.mapquest.com/maps/map.adp?zoom=9&mapdata=i8rr6UmMevNYcUiLIZIcH0SnN5PCz27NEHq6MqyK5s05eWoaIZf6N40M7zdkcroH%2f2A3ezYta2tY9TXyRqZJ380dbq7ocziqmgzAdS0z8Ly4%2fwrFZEJEwEPJq16l49d7ipOLDI92rZmjPHosoi8i3i1mNcPP43aLDxKCnGqVXNiFS3EK1hE0HCf7fYkY3%2bTANF7Jamq5PTvXTQovi%2b2IUg3t2WmaFCSRXmITqMIzJwOfQALeTQQ5Wr7%2f27GNo98cMHtxiNgcd8ee3R2bcTeGHhuWJCP6X8QNPKr08mGjaHrKNFAP7fS4m7IPR06shIBaPPHJkKUhz5f5sJ8a9UJjxKKYksKCIhnLSJjulR8%2frz10EdK6RSXZjw9kAIMDYOqc
--modified by Ken C. at Thu, May 16, 2002, 02:48:22
Re: Jankovic visit
Dear Ken,My condolences on the death of your step-sister. Your memories of her must be a joy to think of. You certainly gave it the old college try getting to a specific doctor. Maybe your mind will be at ease now and you'll be able to adapt to treatment where you are. Good luck. Sally in North Idaho
Re: Jankovic visit
So sorry for your loss. That must be really hard to have things happen so fast after the diagnosis. Sure puts things in perspective for us.
The extra stress certainly has made your symptoms worse. Hope you do better soon.
Re: Jankovic visit
I am so sorry for you, and the people she left behind, but as i know someone who lingered on for 2 years in misery I am so glad for your stepsister that she didn't suffer too long. She must have been a very nice person for you to remember so fondly and i am sure she would have been so pleased that you have so many happy memories of her.
Love from Pippa and a big hug of condolence for your loss of someone so nice in your life.
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