EMG and nerve excitability

[Bradkl]

Thanks affected I appreciate the best wishes and also I completely accept I certainly do need to try and move past my anxieties. I appreciate all the feedback from everyone on this thread and if anything I have gathered from my pressing all these top specialists can help others with concerns then that is great. I have informed Nikki of some of the feedback I got from Professor Turner and also Robin Howard and Cathy Ellis any many others. I think I have bothered most of them over the last 15 months. Interestingly they all specify that twitching alone can come first and have seen it first hand but that it is very rare indeed. One contradiction was Dr Richard Orrell who feels it is more common in retrospect than the others have experienced but indeed it is their opinions based on their experiences with patients.
Again thanks for the support and I have read the stickies which are indeed very informative and certainly help to put things into place for the most common presentation and progression.
Thanks
Brad

 

[Bradkl]

Also just want to get opinion on the high CPK? Thanks.

 

[Nikki J]

I don't think you should worry about the cpk Really. We have given our opinions, you apparently have been emailing various experts so not really sure why you came here. If you care to share the results of your Oxford visit that would be fine.

Your emg and clinical exam said no als. The expert in the ion channel issue said not consistent with ALS. We have nothing more to offer you right now. Please consider what I said to you privately about not wasting your life worrying

 

[Bradkl]

Thanks Nikki, really appreciate the feedback. I will try to get grip on the anxiety. For what it's worth and if it helps others here is a complete copy of the email from Turner:
Dear Mr Lewis,

I understand the anxiety this generates. Fasciculations without weakness are very common and benign, and it is not my practice to organise EMG in the absence of weakness. It is rare for MND patients to report fasciculations ahead of any detectable weakness (~1% in my anecdotal opinion). Typically in such cases it is no more than 6 months ahead of clear-cut weakness, but the longest case I have seen was 2-3 years. This was exceptional.

I receive many similar emails each week and try to respond once to help reassure, but I hope you will understand that I can't offer regular personal advice beyond that.

Sincerely,

Martin Turner

 

[Bradkl]

And Nikki, I wouldn't mind if had just been emailing specialists as it would have been cheaper. Apart from turner all the others I have actually had appointments with. Should have spent that money on anxiety.

 

[Nikki J]

Should have spent that money on anxiety.

Agreed. Time to put that thought into action

 

[affected]

Thank you so much for posting that actual reply from the doctor.

It showed clearly how you have twisted the meaning of his words. It states what we have stated here very clearly in both the sticky and our posts.

It really is time to move on. This thread can do no one any further good. I know you are anxious, I get it. We are dealing with something bigger I'm sorry and our time is precious.

This is your next stop for help:
http://www.anxietyzone.com/

 

[Bradkl]

Tillie, not for any purpose of argument but I don't like being accused incorrectly and you should not be so swift to condem people. Professor Turner wrote apublucation that said it is not confirmed to diagnose BFS until 3 (maybe 4 can't remember) years. This is what I referred to earlier. I posted the reply on here direct from turner to benefit others in anxiety and not for you to twist things which you have tried to do. I need to move on fact and I get that. Please don't twist when people are trying to leave some help behind from others that has not cone from you. You do great work and your time and dedication is clearly appreciated by everyone including me but please don't treat everyone else trying to help as stepping on your toes. Now I put my hands up and could be totally wrong in how you have acted towards me but it is how you have come across in this exchange. If I am wrong then accepted by me fully and indeed hope I am wrong and just be reading your tone incorrectly.

 

[Bradkl]

In fact after the post from Nikki before yours which you would have seen there was no need at all for you to respond and tells the story now I read the thread again. The words you posted around the bit where you accuse me of twisting words are just blah blah for you to get the bit in about twisting words and you know it deep down.

 

[faithandlove]

Including myself, people are dying of ALS that are on this site. To respond right now takes a lot out of me since my right hand will not work anymore.

Then we have CALS who have lost their loved ones to this horrible disease, and they still take time out of their busy schedule to help others on this site. Tillie is one of those CALS and she has helped a lot of people.

You have been disrespectful to Tillie, and that will not be tolerated.

I think is tome for this thread to be closed, and you work with your doctor(s) to get a diagnosis.

Good luck to you,
Deb

 

[Bradkl]

Agreed need to work with doctors. Apologies for any offence taken as not intended simply defending myself and apologies if that taken the wrong way. I echoed exactly those words from yourself regarding Tillie helping so many people. Wish you and everyone much love and thanks for time taken on my post. I hope at least it might be helpful to some entering this section to read the point made by Professor Turner. Best wishes and love.