ALS Diagnosis: Doctor Results Compared

Krackersones

Well-known member
I just returned from a visit to a new neurologist. I had to go because I changed medical insurance and needed my Klonopin prescription renewed. I saw the ALS specialist from Kaiser. She was very familiar with my previous neurologist, Dr. Engel. She said he was the one who teaches everyone else. She said if I had ALS he would have caught it. Engel says I do not have it. This new doctor looked at the muscle biopsy report that Engel wrote and said it seemed normal to her as everyone has some denervation and reinervation. I never once considered it normal but she did. She also said my slowing of my sensory nerves was due to being cold based on her reading of the report. She was very insistent that I did not have ALS. She did not deny I have something going on that is making my nerve membranes overly excited but said it is unclear what causes this. She said she gets twitches everywhere from time to time and ALS crosses her mind too but she also said she sees so many people complain of these twitches and knows they are not predictors of ALS but rather a benign syndrome. The down side to the visit was the reflex testing. She noticed my brisk reflexes and when I asked her lots of questions about it she said I had a bit of hoffman sign, jaw jerk, and a beat of clonus on both ankles. I was freaked out and said that the findings are pointing to ALS. She said no they do not and feels they are anxiety related. She said she has the same small bit of clonus and some hoffman sign too. She said it can be normal especially women. She said the jaw jerk finding with the symmetrical hyperactive reflexes made it clear to her this was all due to a generalized anxious state rather than a bad sign. I looked this up and her assessment was confirmed by something else I read on the Internet in a neuro text book. The book said symmetrical hyperflexia with jaw jerk means the person is anxious. She also said my eyes were extremely dialated even though the room was incredibly bright which also pointed to my anxiety level. I was trying not to be anxious but it is hard not to be. Before my appointment, I spoke to a young man in his mid twenties who has had MS since he was 11. He is now in a wheelchair. He said he gets depressed and when he does he gets another tattoo. He then showed me his tattoos. He was there with his mom who was taking very good care of him. I also spoke to a 66 year-old female dentist who had slurred speech and showed me her tongue which pointed to the side when she stuck it out. She said they ruled out ALS in her case but they did not know what was wrong with her. I mention all of this because maybe this hyped up my anxiety before I went in for my appointment. The new doc suggested I give this board and the Internet a break. I think I have to agree with her. I still want to help others but think I need a break. If there is something urgent, you can pm me but otherwise I will try to lay low. My goal is to give myself a year away from analyzing and thinking about this stuff and see where I am at that point. I will check responses to this post but after that I will try to stay away.
 
Best of luck in your year away. Even though you and I don't always agree in our posts, you've probably spent more time helping people here than the most of the rest of the board combined. The BFS community is going to miss you. Best of luck in trying to help yourself.-Mario
 
JRO, I am sorry It took me so long to join this board but I am grateful to you for the wisdom you were able to share with me in the last few days. I understand what it is like to have anxiety but I am going to take your advice and continue to work out , work and live my life as we were meant to do. I hope you will continue to do the same. I hope you were at least able to refill your Klonopin and that you continue to improve every day. Good luck and take care.Mary
 
Hi JRO,I've always found help and comfort in your posts since I share a lot of your symptoms, and not "only" the twitches.I think you're right in taking a break from the board since it just adds gasoline to the everburning anxiety-fire, and if you, like me, have a hard time dealing with the anxiety-part, then your decision may prove to be right for you. I hope so.I wish you all the best.//P
 
Thanks for all the supportive words. I am off to another workout and my efforts to reduce anxiety. It will be a daily battle but I will give it my best shot.
 
Great post Krackersones. I wish you luck and please know you have helped me through this journey. I hope you come back from time to time to post. I totally agree with taking a break. My anxiety has flared up again (not from BFS but from other things) and I know the internet is not helping me either. My husband actually threatend to disconnect the internet service if I didn't stay off. LOL Good luck and please if you ever find answers to this, please let us know.~Leslie
 
Krackersones, you have been a help to me (as a newby) with your thoughtful responses to some of my posts. Sounds like you might be in a little bit of a low moment. If you feel you need a break from this board, I respect that. May you find what you are seeking, but always remember. If you ever wish to share you experiences with others..you know where to find us....talking about things, getting it off your chest, as you know, helps more than you can imagine ( yourself as well as others). We are all on the same page, I guess you are just 'book marking' us for a while.cheersRodger
 
All the best JRO - look forward to hearing from you when you come back in a year... you will be able to reassure us all that you are still keeping well!RegardsSimon
 

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