New Neurologist neuro muscular specialist

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New Neurologist neuro muscular specialist

Postby msm on December 16th, 2010, 7:52 pm

Today I had the privelidge of going to a Neuro Muscular specialist who happens to be the head Neurologist at the IU med center in Indianapolis. My neuro thought that it might be good to talk to him to see if he had any new ideas regarding medications since he is an expert in nerve hyperexcitability. So today I took the three hour drive to Indy after waiting over a month for this appt. When I got to this huge hospital everyone was friendly they checked me in and told me to come back to the waiting room by 1:15 since I was a bit early. When I came back at 1:20 the Dr. himself came out and got me and took me to the exam room which contained an emg machine. He introduced himself and told me of his credentials and wanted to hear my story of how I first noticed my twitching and symptoms. After I told him he asked if I had been under a lot of stress. I informed him that yes it was one of the most stressful times I ever lived through. He said that the perfect storm of that type of stress could have caused the whole thing. He also informed me that it is often brought on by a virus.

He said that he himself got bfs in med school and was convinced that he would be in a wheelchair hooked to a respirator on his graduation because he too was convinced he had als. Now after 30+ years he just has learned to ignore his twitches and is actually amused by them. He told me I would learn to ignore them which is easier said than done but it took him over two years so it is a process. He than did a thorough clinical and discovered no weakness or atrophy, good reflexes and no spacisity. He concluded by doing an emg on my calves and shins which he picked up some fasiculations on and one in the tricep muscle and at my request one in my lip. I had asked him to do my lip because of the facial twitches and he said if I had bulbar he would have known it the second I walked in and facial twitches are very normal for BFS. All were normal as he showed me the screen and explained what motor neuron disease would look like and I did not have any signs of it and after 16 months I would not develop anything from this in the future. I asked him if BFS ever turns into ALS and he said never and quoted the Mayo clinic study indicating the same. When I asked him the difference between the twitching and the sensory symptoms he said they are both caused by hyperactive nerves. The sensory nerves caused the sensory symptoms and the motor nerves caused the twitching.

For those who have experienced what seems to be clonus meaning when they put their foot up on something it bounces he said that everyone has that to some degree himself included and it is really more of a tremor or a pseudo-clonus. He said it all depended to what degree your nerves were excited. With him all it took was an extra cup of coffee to get his to do it. He also said a little clonus in some people is actually normal. He also told me wide spread twitching proved it was nothing sinister because als does not ever present that way. The more wide spread the more likely it was to be benign. He also said als starts out with weakness not twitching and he was the one who usually had to call attention to his patients twitching as they had not noticed it themselves.

Unfortunately there were no new meds he wanted to suggest and that klonopin was one of the better ones for this as he felt that the other anti seizure meds were not necessary in my case. He also felt that eventually I would not need anything because I would move past this and not care anymore. It was a long day and six hours of driving but well worth it for the peace of mind and knowledge this Neurologist was able to give me. He even gave me his card and email in case I had any questions. I am so grateful that he was able to give me the all clear and am sure it will be my best Christmas gift of all. I hope some of what I have written here helps those on the board still in doubt that BFS does exist and can be conquered because today I was convinced that it totally can.

Merry Christmas :D

Mary
Last edited by msm on December 17th, 2010, 12:33 am, edited 1 time in total.
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Re: New Neurologist neruo muscular specialist

Postby jennract on December 16th, 2010, 8:05 pm

Great news and very reassuring Mary- thanks for the update!

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Re: New Neurologist neruo muscular specialist

Postby twin2 on December 16th, 2010, 8:32 pm

Great post, sure to go down in "AboutBFS" history.

These "just got back from the neuro" posts are some of the most important because they reinforce the good news we already got from our own neuros. Plus, it allows us to access the best specialists in the world without leaving our couches. So thanks so much for taking the time to give us the play-by-play. The clonus info was especially reassuring for me.

Merry Christmas to you!

Becky
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Re: New Neurologist neruo muscular specialist

Postby Barbie800 on December 16th, 2010, 8:40 pm

Awesome Mary! You don't know how reasurring this is. I feel like I have been given a Christmas present and I was not even the one seeing the doctor. I hope all the new people find this post.
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Re: New Neurologist neruo muscular specialist

Postby RunningBear on December 16th, 2010, 9:17 pm

Mary, this is great news and an excellent post!!! Thank you so much for taking the time to share. Its so very reassuring and though I am sorry that this neurologist is inflicted with BFS, its so nice to hear of a neuro that has had experience with BFS first hand, literally. I am very pleased to hear that he gave you a bill of good health, and because so much of what he says I relate to, I am sure he would have said the same to me, and everyone else here. I'd like to actually see this guy but I am on the west coast and you aren't going to catch me in the midwest this time of year with all the nice weather you are having there right now. :lol: Thanks again for posting!
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Re: New Neurologist neuro muscular specialist

Postby edado69 on December 17th, 2010, 3:51 am

One of the best post I ever read in this forum. I hope many members will read it!
Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
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Re: New Neurologist neuro muscular specialist

Postby aussie sufferer on December 17th, 2010, 4:07 am

Excellent post Mary and easy to understand. Certainly has given me some answers to the questions I have had, and consequently some relief to know I am a 'normal' BFSer.
Look after your self & I will do the same! :D
cheers/safe & less twitchy xmas
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Re: New Neurologist neuro muscular specialist

Postby sylvia on December 17th, 2010, 4:23 am

thank you for sharing! this is very reassuring!
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Re: New Neurologist neuro muscular specialist

Postby virginiasteve on December 17th, 2010, 9:11 pm

Ho-Ho-Ho....Best post of the year:)

Thanks for sharing...
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Re: New Neurologist neuro muscular specialist

Postby msm on December 18th, 2010, 12:39 am

Thank you to all those who responded I am glad you found it informative and helpful. Hopefully in this new year it is my sincerest wish that we could all move past this and live our lives to the fullest realizing that as annoying as it is it is a benign condition.

May everyone have a wonderful Holiday Season :D

Mary
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Re: New Neurologist neuro muscular specialist

Postby anxietysucks on February 16th, 2011, 9:35 am

Just read this post again, and it should be required reading. We are ALL ok! Thanks MSM!
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Re: New Neurologist neuro muscular specialist

Postby msm on March 25th, 2011, 3:33 am

Thank you Don, I am glad that it reasured you and you can bet that this guy knows his stuff. Even he has it. Thank you for your postive response. I would have thanked you a long time ago but I did not realize you posted to this thread. :D

Take care and know you are well

Mary
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Re: New Neurologist neuro muscular specialist

Postby tiggida on May 25th, 2011, 4:36 pm

This is the first time I have read this post. I saw March 25 and thought it said May 25th. I am sure glad I saw that wrong, or I might not have ever read this. What a great, reassuring post. This post should be stickied or something and should also be required reading for all newbies, just like "bfs in a nutshell. Thanks MSM
TAnya
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Re: New Neurologist neuro muscular specialist

Postby tiggida on May 25th, 2011, 5:36 pm

hahah, okay I get it now, this post is stickied...that's why it's at the top with a light bulb sign. I wish I would have read this sooner.
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Re: New Neurologist neuro muscular specialist

Postby RandyR on July 1st, 2011, 4:05 pm

Wow, this is the first time I noticed this sticky. What a great reassuring post. I'm going to copy it to my computer just so I can read it from time to time. Youre AWESOME Mary!!!! :D


Take care and God Bless

Randy
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