I need your opinion


Posted by Ruth D. Barth , Feb 26,2002,13:33   Archive
My appointment with a neuro-opthalmologist who is said to be a blepharospasm expert finally came to pass in early February. He is a specialist in Waterbury, CT, very well regarded in the medical community. He examined me for four hours, gave me all kinds of tests, very kind and thoughtful and at the end said he felt 97% sure I did not have blepharospasm based in the fact that I only had spasms at night upon awakening (two or three times a night), my eyes were only squeezed shut for a several seconds,I was not light sensitive and did not have dry eyes.

I asked what could possibly be keeping me up at night and he asked if I had animals! Maybe I am allergic to cats and dogs! I have always had animals and I thought this is very far fetched. He asked me several times if my husband had actually seen the spasms and I had the feeling he doubted my word.

My opthalmologist thinks highly of this doctor and my internist is stumped. In these few months my blood pressure has risen and I have pains in my neck and shoulders.

Should I seek the opinion of a neurologist rather than a neuro-opthalmologist or what? I know many of you have had trouble getting a diagnosis and if it weren't that painful I would just let it go and wait for it to either get better or worse. Would appreciate your thoughts.




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Re: I need your opinion

Re : I need your opinion --- Ruth D. Barth
Posted by Delaine Inman , Feb 26,2002,14:26 Top of Thread Archive
I would see a neurologist for the symptoms you describe.



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Re: I need your opinion

Re : I need your opinion --- Ruth D. Barth
Posted by Lynn Yarbrough , Feb 26,2002,14:55 Top of Thread Archive
Ruth, you sound very uncomfortable. I hope you get some help soon. For what it's worth ...

I AM NOT A DOCTOR.

If someone were to point a gun to my head and say, "diagnose or die!", I would blurt out "Spasmodic Torticollis" and try to run away as fast as I could. Mainly because it's hard to understand and spell. But also because your back and shoulder pains are symptomatic of that. There is also some indication of both BEB and Meige, especially in that your spasms start up again whenever you awaken. I agree with Delaine that a neurologist should be your next resource to tap.

Good luck!

--- Lynn




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Re: I need your opinion

Re : I need your opinion --- Ruth D. Barth
Posted by MaryNY , Feb 26,2002,20:33 Top of Thread Archive
Ruth - I, too, would say see a neurologist (or more than one). Most of us have "seen" many doctors before being correctly diagnosed. It took me 8 drs. over a 10 yr. period, and the neurologist was the one who finally gave me an answer....BEB. Mary



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Re: I need your opinion

Re : I need your opinion --- Ruth D. Barth
Posted by Linda in CA (Linda Tuttle,Linda in CA), Feb 27,2002,08:36 Top of Thread Archive
I have been waiting for the past month to see a neurologist and know how disappointed I will be if I don't recieve a diagnosis and some relief. It has to be so frustrating to think that you have finally found someone who will help and not get any clear direction. I have already decided that I may need to request a second opinion, and several of the BEB BB friends suggested seeking out a movement disorder specialist. You may want to see a neurologist that is a movement disorder specialist. I hope that you will quickly find the help you need!!



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Doctor(s)and ducks ...

Re : Re: I need your opinion --- Linda in CA
Posted by Moderator-JB , Feb 27,2002,14:14 Top of Thread Archive
Linda & Ruth,

Many 'qualified' doctors do not recognize the correct symptoms of this disorder or others. Often it depends on the physician himself.

In my search for a correct diagnosis, I finally found a very caring Opthalmologist who knew what it was and what to do. I also went to a well known Neurologist who knew what I had but had the bedside manner of a wart hog. I now feel lucky to be treated by an excellant Movement Disorder Specialist who listens to what I say and works with me as a team to treat the disorder.

Keep looking until YOU feel satisfied with who you are paying that large office call payment to. You are the consumer.

Judy


--modified by Moderator-JB at Wed, Feb 27, 2002, 14:15:13




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Re: Doctor(s)and ducks ...

Re : Doctor(s)and ducks ... --- Moderator-JB
Posted by Linda in CA (Linda Tuttle,Linda in CA), Feb 28,2002,07:31 Top of Thread Archive
I think some doctors must take a class in how to be the best (or worst) "wart hog." Too bad they are not forced to post ratings from previous patients on the level of their expertise and their wart-hogism - like warnings on cigarettes.



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Re: I need your opinion

Re : I need your opinion --- Ruth D. Barth
Posted by kerry horton , Feb 27,2002,18:18 Top of Thread Archive
Hi Ruth:
I am so sorry to hear that the Waterbury Doctor could not give you a diagnosis. I know how hard it is to wait for that appointment - and then to deal with the disappointment of not getting any help.
One thing that comes to mind is something that Mom was tested for when she was searching for a diagnosis - lymes disease. Her 2nd Neurologist was a lymes expert so he threw in the test as a long shot. I guess lymes disease can have some very strange effects on the nervous symptom. Since you mentioned your pets, it came to mind. I am sure if you can find a good Neurologist they will check that for you.
Good luck and hang in there...
Kerry in CT with a chocolate lab who thinks he's a person.



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Re: I need your opinion

Re : I need your opinion --- Ruth D. Barth
Posted by Shanasy in IL , Feb 28,2002,08:31 Top of Thread Archive
I don't think that the cat/dog allergy theory could be too far-fetched. Many people develop allergies as they get older and their bodies continue to break down due to increased toxicity (negative/toxic thoughts, food, water, air, checmicals, etc.) Interesting thought about your animals and your symptoms being at night and I don't think i would ignore that. I highly suggest that you try a couple of nights sleeping WITHOUT your animals and make sure it is a DIFFERENT room where their dander/hair has NOT been. Gotta guest room you could try? (Let your husband continue to sleep with the "babies" as they probably thoroughly love sleeping on the bed!).

IF your symptoms DO lessen or stop and you think you MAY be allergic to your babies . . . well there are ways to treat that (and I am NOT suggesting you give up your "babies" or stop sleeping with them). If it IS allergies - allergies are usually caused by a weakened immune system. Unfortunately, many people get rid of their animals due to allergies (this excuse sickens me) when they could control or rid their allergies by strenghtening their immune system and improving/changing their diet (AND their pets' diet!).

Just a thought! BTW I sleep with my dogs and cats too and wouldn't give it up for the world!!!!!! Hope you will look into it and let us/me know what happens.

Shanasy




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Re: I need your opinion

Re : Re: I need your opinion --- Shanasy in IL
Posted by Ruth D. Barth , Feb 28,2002,10:54 Top of Thread Archive
Thanks to everyone who replied to my posting. I will have to look into all your suggestions, how great it would be if it were just an allergy! I am starting again at the beginning. Lynn, I had a question for you. You mentioned that you thought this could be BEB/Meige because the symptoms occur as I wake up. Is this common for Meige? My opthalmologists thought that because BEB was unlikely because I only have this at night, never in the daytime. Is Meige a different story?



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Re: I need your opinion

Re : Re: I need your opinion --- Ruth D. Barth
Posted by Virginia , Feb 28,2002,11:15 Top of Thread Archive
It would be unusual for you to have symptoms of BEB or Meige only on waking at night. But then, as we have found, we don't all exhibit symptoms exactly the same way. I'd keep looking and keep an open mind. It might be BEB, but it might also be something else.



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