BEB and Apraxia


Posted by Susan Maupin , May 07,2001,22:36   Archive
Hi -
I'm new here and glad to find you all. I was diagnosed in May 1998 by a neuro-opthamologist with BEB. Experimented with medication then Botox injections with no good results; received 100 units every 2-3 months. I had a myectomy in 1999. Had some good results for about a year using less Botox then gradually increasing Botox to the point of having no good results. In January this year I went on medical leave from my nursing job to learn if and what else I could do to find relief. I have severe apraxia in the right eye and regular headaches, particularly around my eyes. I quit driving a year ago. In March I started on a glyconutritional supplement called Ambrotose and am encouraged to experience some slow improvement. Has anyone else experimented with this product?
Thanks,
Susan



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Re: BEB and Apraxia

Re : BEB and Apraxia --- Susan Maupin
Posted by Sally - in - Idaho , May 07,2001,23:40 Top of Thread Archive
Hi Susan ... Welcome to the Bulletin Board. We have several nurses on board who will, no doubt, be here to add their welcomes soon. I'm sorry that you're not have results from Botox. I have been getting injections every two months since October 1999, with up and down results. I am at 100 units and often wonder how long that will be effective at all. I've not heard of the treatment you mentioned. What is it/where do you obtain it/how do you use it?

Please join us often and tell us more about yourself as you feel comfortable doing. I was unable to continue my work as a school librarian so took early retirement.

Sally in North Idaho




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Re: BEB and Apraxia

Re : Re: BEB and Apraxia --- Sally - in - Idaho
Posted by Susan Maupin , May 10,2001,15:00 Top of Thread Archive
Hi Sally,Thanks for your note. I sure wish I had taken time to find this b.b. years ago. It has helped me to be off work since Jan.2001. I miss my friends in the O.R. but not too many of the surgeons. Larry was drving me to work and my friend picked me up. Giving up my car was the biggest pain. I am a new grandma and want to do more soon with Anna. She is going to be 2 yr. in July. I am taking glyconutritional supplements. ambrotose is a blend of plant saccharides. This helps with your immune system. It is apowder or pill. I started Feb. 2001. I feel I have some improvement.I have just started on our computor, so forgive my mistakes. It bothers my eyes,so I never tried to learn. I guess iwill try to say Hi to one more new friend.Thanks Sally for being there. Susan



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Re: BEB and Apraxia

Re : BEB and Apraxia --- Susan Maupin
Posted by June in Toronto (June Floyd,June in Toronto), May 08,2001,04:45 Top of Thread Archive
Hi Susan, welcome to the bulletin board, but sorry you have this disease. I don't know anything about the glyconutritional supplement you are using but glad to know it might be helping you - perhaps others on the board know about it and will share. There are other nurses on this board, one of whom has just had a myectomy and will no doubt `talk' to you soon.
I receive 90 units of botox about every 4 months and, other than side effects, it works for me. I had to leave my job at a university 6 years ago because of beb - I am able to drive 3 out of 4 months, limited distances and conditions.
Please continue to post - you'll find a great groupof people here. Best wishes

June in Toronto, who woke up at 5 am (again) this morning - darn it!




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Re: BEB and Apraxia

Re : Re: BEB and Apraxia --- June in Toronto
Posted by Susan Maupin , May 10,2001,15:48 Top of Thread Archive
Hi June, Thanks for your note. I have not heard from anyone with questions about the myectomy.I am glad I did, because it did help for awhile. I am blessed with a wonderful supportive husband, dad, and dear friend. and my three children.I do wish I had found you all sooner, but glad I have you now. I still wake up at 5 am.but am learning to sleep in tell7am. All those years of the nursing life. Thanks for being here. Susan



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Re: BEB and Apraxia

Re : BEB and Apraxia --- Susan Maupin
Posted by Virginia , May 08,2001,08:24 Top of Thread Archive
Hi Susan,
I'll add my welcome to the others you've had. I'm running about a year behind you. Diagnosed in 1999 and upper myectomy in 2000. The botox is working right now for me in the lower lids and forehead (65 units last time). I also have apraxia, but so far it is manageable. There has been a lot of interest in nutritional supplements here on the board. Could you give more information on the components of the supplement and what kind of improvement you are experiencing? Again, welcome and please feel at home here. We want to help and be helped.
Virginia, native Texan, naturalized Alabamian



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Re: BEB and Apraxia

Re : Re: BEB and Apraxia --- Virginia
Posted by Susan Maupin , May 10,2001,16:13 Top of Thread Archive
Hi Virginia,Iam enjoying all my notes of welcome and support today. I am glad I had the myectomy. It did help, and he did a good job with the scar. Working in the O.R. helps alot when you need a surgeon for yourself or family. I am in the class of the 20% that do not get results with the botux. I have tried many diets and nutritional supplements. So far I am finding some improvements with these glyconutritional supplements. Ambrotose is a food for our body. The body takes this food and the body heals itself. I have tried notto repeat myself as I have answered all these nice notes. I am asuming you will read the other replys,too. As I said the computor is very new to me, so forgive my errors. Thanks for being here and caring. Susan



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Re: Ambrotose

Re : BEB and Apraxia --- Susan Maupin
Posted by rosann , May 08,2001,22:45 Top of Thread Archive
Hi Susan,

I have been taking Ambrotose since February. (And the PLUS.) So far, no improvement in my BEB. How much do you take per day? I have been slowly increasing and now take 1.75 teaspoons every morning.

Rosann




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Re: Ambrotose

Re : Re: Ambrotose --- rosann
Posted by Susan Maupin , May 10,2001,15:26 Top of Thread Archive
Rosann,Hello Thanks for your note.I am new to the computor,but I am trying.I started in Feb. too. I am now taking 1 T. of the ambrotose powder, 2 Phyt-Aloe, and 6 Pluses,2 Catylist, 2 immuno-start, 2 manna-cleanse,500mg. of magnesium, and flax seed oil. I started doubling the ambrotose in March and started seeing some results. M y left eye was closed and my right eye was nearly shut when I went on medical leave in Jan. I have tried other supplements and nothing, so I am going to stay with this longer. Neurological disorders are slow to heal.Thanks for being here. Susan



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Re: Ambrotose

Re : Re: Ambrotose --- Susan Maupin
Posted by rosann , May 13,2001,23:57 Top of Thread Archive
Hi Susan,

Please let me know how you take the 6 Pluses. What time of day and do you take them all at once or are they spread out? Also, if you don't mind my asking, how old are you? I am 44 and have had BEB almost 6 years. I had a problem with the PLUS so I stopped and just recently restarted taking it. (If you want the details, please email me directly.)

In addition to Ambrotose, Phyt-Aloe, and PLUS I also take a multi-vitamin, Bilberry and Moistur-Eyes. Increasing anything too drastically can cause my system to go haywire, so I am increasing slowly and only one supplement at a time.

Good luck on your treatment plan! Glad to hear that the Mannatech products are working well for you.

Rosann




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Re: BEB and Apraxia

Re : BEB and Apraxia --- Susan Maupin
Posted by patti , May 09,2001,07:06 Top of Thread Archive
Hi Susan! Welcome! I/we are happy you found us. I too am interested in knowing more about Ambrotose.
I've been taking a combination of supplements and so far it's been 5 months since I went for my Botox shots. I'm going to see how long I can go without them. They only worked for a couple of weeks for me anyway. I no longer work or drive.



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Re: BEB and Apraxia

Re : Re: BEB and Apraxia --- patti
Posted by Susan Maupin , May 10,2001,16:32 Top of Thread Archive
Hi Patti,You are my last note to write to,and I did not want to leave you out. I feel such love and concern from eveyone. My eyes are giving me trouble, but I hope you will read the other replys to learn about ambrotose. Sounds like you are in that 20% class of people that do not get good results from botux.Have you had the myectomy yet? It did help me for awhile and was able to take less botux afterwards.Be sure to always get a second opionion before any surgery. OPPS there goes that nurse in me! What supplements are you taking? Well I am going to close for now. We are going to see Anna tonight(granddaughter) She is my angel, and my therapy. God bless you for being here, Susan



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Re: BEB and Apraxia

Re : BEB and Apraxia --- Susan Maupin
Posted by Shirley-Arkansas-USA , May 10,2001,21:12 Top of Thread Archive
Hi Susan,
Let me add my welcome to you. I'm also a nurse that had to resign due to BEB. I was diagnosed about 2 years ago. I'm 49 and Dr. Anderson did a limited upper myectomy on me about 3 weeks ago. I also have an apraxia problem that wasn't being helped by the botox. I will still have to have the botox in my lower lids and middle of my forehead. The botox did work for me for the squeezing and spasms but I still couldn't get my eyes to open, so finally made the decision to have the myectomy done in hopes that it will improve my condition. I was also receiving 100 units about every 8 weeks. May I ask, who did your surgery and what you had done? What muscles were removed? I had the muscle removed from my upper lids, under brows, extending about 1/2 to 3/4 inch out to the temple area and then about that same amount from the outer corners of my lower lids.
I also take Klonopin .5mg twice a day and Benadryl 25mg three times a day and Adderall 5mg. twice a day. I've cut the Benadryl and Adderall dosage in half since my surgery and am slowly going to get off both of them. I found that the Adderall helped with the apraxia. I also take numerous vitamin and mineral supplements and bilberry and flax seed oil.
We're glad to have you here on the bulletin board. There is much information to be had. We discuss all kinds of things. I've only driven short distances a handful of times in the past two years. I don't believe that I have driven at all in the past year. It was very hard to give up. But then so was reading. I'm pretty sure that the surgery will allow me to read. I've already noticed that when I look down, I am able to keep my eyes open better. I couldn't do that at all before the surgery.
Stick with us. We're a fun loving group. Everyone seems a bit down right now but I'm sure that won't last too long.

Again welcome and keep asking questions or offering advice.

Shirley in AR. who is stiff and sore from my morning gardening experience.




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