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  • Well I tried to update on the DIHALS forum, but it went to Moderation (yes, I said "Dr." sigh). Anyway I just returned from new neuro appt, EMG both legs and COMPLETELY CLEARED OF ALS.
    He is referring me to Houston to see Dr Harati to diagnose muscle cramps. Thinks I might have a rare something or other and need testing done that is not available in my area.
    NO ALS. :)
    Well my "diagnostic merry-go-round" thread is closed (??), so I guess I'll post update here as I know the undiagnosed are supposed to stick to one thread.
    Anyway, I finally have an appointment with a new neurologist recommended to me by my local ALSA representative...Wed. April 22. (Also found out my insurance will cover some of the cost of a consult at the Baylor clinic, if it comes to that. LSU is NOT recommended by the ALSA in my area.) But... If I go by what is said on the DIHALS subforum, I think I'm NOT dealing with ALS as I am having way too may cramps/spasms/pain (feet, back and hands) and I had the dirty but not als dirty EMG on my arms. Seems way too bilateral and in too many places to be ALS. I am a bit overwhelmed with my decline in the last 8 weeks though so am hoping for some answers and relief with the new neuro. I hope to post something somewhere to report back, if for no other reason than to maybe point some DIHALS-ers in a different direction.
    MT if you reply to me you need to do it on my wall or I am unlikely to see it.
    We do NOT need a HA forum here, this is a forum for those of us dealing with a terminal disease, there are HA forums all over the net that are more appropriate for those who do not have ALS to move to. If you read the sticky again it clearly states that you ask in your own thread then move on. We are not mean or uncaring, we are trying to deal with the unthinkable and support each other and can't spend energy on anything more. All the best, Tillie
    Head's up: EVERYONE'S tongues twitch...you should look on youtube for TRUE tongue fasciculations! EEK.
    The neuro visit will be informative. You can expect an exam, including reflexes, strength tests, probably walking test. You will probably leave with an appointment for EMG...mine was booked 10 weeks out. I don't think a neuromuscular specialist will be needed until you get some type of provisional or solid MN diagnosis from your neurologist; you'll want to get a second opinion on that, of course. I'm hoping you get what I did not: something showing up in bloodwork that leads to a treatable AH!Ha! moment!! So weird hoping scans and bloodwork show trouble!! Jeepers. Best of luck. Let me know how your appointment goes, ok? Take care!
    Yes its my first visit. Had some more blood tests today following the abnormal ones from 2 weeks ago, GP has advised that the results will be with the neuro for my visit next Thursday. Not sure what to expect really, I was under the impression that if anything neuromuscular was suspected the neuro would refer me on, but during conversation with GP yesterday he advised that the neuro can make the diagnosis himself, and will only refer on if there is an element of doubt! Worrying as I think my GP is pretty sure it is MND, he`s already mentioned it during a previous apt, and again insinuated towards it during yesterdays visit. And I did what you told me not too.. I looked at my tongue and guess what, is twitching!. I will investigate the friend thing when I get chance. Hope your doing ok.
    I agree, its horrible even considering the possibility of having such an awful disease. Although considering it is clearly a hell of a lot better than having it!! Your right, despite continually telling myself how likely it is that I have something other than IT, I cant seem to get it out of my head that I do have it!!
    I appreciated the sentiment behind your message to me, its nice to know that there are people out there who are in a similar frame of mind, but who still want to try and help others with their fears. I`m sorry that you got into trouble, hopefully they went easy on you! :eek:) I will follow your case as well, and pray that we both get a positive outcome at the end. Im not sure if I can add friends or contact yet, but if I can I will add you, as long as you don't object. Take care
    Thank you for your post, I did not want to reply within the thread as I am keen to reduce the amount of anxiety based threads which clearly, and rightly so, annoy the senior members. That being said I appreciate you taking the time to respond to me, and agree that worrying about something you may or may not have, in fact more than likely don't, is not a good use of time! I hope that you manage to get some clear diagnosis of your own problems soon, and that they are not caused by the thing we fear most!
    Oh thank you! I had no idea! I will shhh myself on other people's threads :) I think us "undiagnosed" could use a spot to converse with each other; just sayin'. If that is a HA thread or forum, that is fine. I thought we could do that here...oops! Thanks again!
    Hi, while you are undiagnosed, we ask that you keep your posts to your own DIHALS thread. I understand you wish to help others, but there are forums designed for that such as health anxiety or bfs forums. This section is designed for people to ask us and receive and answer and then move on as the sticky suggests. Thanks for understanding. Tillie
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