Question for Neuro Patients about Issac's

[BarbiePetals]

I have a question for everyone who has been to a neurologist. Did anyones neuro ever mention Issac's? Or, did any of you mention it to your neuro? When I brought it up to my neuro he said "You don't have that, it's rare". Now, how does he come to a conslusion so fast? When I read the symptoms of Issacs it just sounds so familiar with alot of everyones symptoms. How does a neurologist rule out Issac's? Just by the doing the clinical exam and EMG? Is that how they come up with BFS instead of Issac's? It just bugs me that some doctors are so fast to rule out certain things. ~Leslie

 

[Krackersones]

My opinion is that a lot of these neurological dx are clinical dx so it is not like there is a definitive test for them and they do not know the cause of them. The best way to know the cause is if a specific treatment works then you can have a good guess but even that is not 100%. Isaacs responds to plasma exchange so they know it is immune-related. They say bfs may be immune-related but because it is usually mild no one tests to see if it responds to immune modulating treatment-- it is not worth the risks involved. I think there is just a lot of different things in the body impacting the nerves and a very wide spectrum of the severity in which it can present. So I believe you can have a very mild case of the exact same thing a person has a severe case of but you will never get the same dx. Medicine just has not advanced that far and there is not much incentive to nail down the cause of milder problems. This of course is just my layperson's opinion based on what I've read and heard from neuros when I ask about these conditions.I get facial twitching so I thought I would research bells palsy. I know I don't have that but I thought what I have might be related. I learned that twitching is a symptoms of bells palsy and people who have had it report facial twitching years later. The articles say they don't know the cause but think it may involve a virus or be autoimmune. When something hits a facial nerve, you really notice and run to the doctor. But I wonder if the same thing happened to a foot nerve or a shoulder nerve, whether anyone would notice. Bells palsy usually totally resolves in months. I mention this to just note that there is a longstanding belief that viruses and the immune system can cause damage to the nerves and that the nerves can heal.

 

[priorityhigh5]

Hey Leslie,Your Neuro dismissed it so fast because he knows you dont have that based on the symptoms you presented to him and his examination of you and your history. To us everyday people, the symptoms do sound very similar, however there are other things that Doctors look for that we either 1) dont even know about, or 2) would not have a clue how to look for even if we did know about it. You are off trying to find an answer again...hunny you already have your answer...you have BFS...so stop it...stop torturing yourself and get back to working on controlling your anxiety. THAT is the right track for you...and deep down, you know it is.Stop it now missy...I am not even joking...**gets the hose out and crosses my arms and taps one foot** **H's & K's**~*~Amy~*~

 

[Howyaboutylarry]

Hey Leslie..stop googling symptoms...these are advices that I received when I joined aboutbfs. You guys are supposed to calm my anxiety down...not look for more stuff for me to go crazy about. And yes, I am starting to believe my world-renowned Neurologist, if she says i dont have it, I believe it. Regards,TUB...TUB is not my name...I hope people dont think that. lol.