Trying to cope until 2nd Mayo appt..
AL, thank you so much for changing my screen name! "scared2late" was just too negative a conotation for me to handle and keep looking at... sincerely, thank you
My appointment at the Mayo Clinic in Jacksonville, FL is now set for January 21st, it's 5 1/2 weeks away and I have been waiting this long already... They were so kind on the phone about it all.. I told them what my Dr said at the ALS Clinic and how he just refused completely to go any further or answer a single question - even regarding a swallow study - (he clearly stated I needed one but refused to administer or set one up just kept saying the Mayo Clinic will take care of all that) and they said it is actually very common! No Dr wants to be the one to give a Dx and then be responsible if their wrong... She really helped me calm down and feel better, I guess I sort of understand the Dr's position - but he could of certainly handled it better than he did. When I left his office I felt utterly lost and helpless and even told him that while begging him for some type of answer to at least ONE of my questions and his only answer to ALL of them was "I can't give you a diagnoses, you need further examination at a Mayo type facility" he said that same reply over and over again to anything I asked or that my cousin asked (she actually got a little irate with him). He was like a completely different doctor then when I was there the first time. It was like he didn't want to touch me with a ten foot pole! Actually that is about the same type of response I have received from almost every Dr I have seen in the past year, just thought and expected it would be different there.. So once again is time to forgive and forget and just keep going further, inch by inch maybe! but still further! My gp Dr has been so wonderful through out all this, I thank God for him. Someone asked about my EMG, and other test, the Dr only printed out his first findings and all the blood work results and handed them to me while denying my questions - unfortunately I didn't realize they weren't included in what he was giving me! His initial findings letter mentioned all kinds of decreased things that I could never even try to begin to spell or understand - but I'm going to wait about 2 weeks and then request a full copy of my entire file so it should include absolutely everything including his dictation of our last visit (they have to provide all, it's the law in Florida). Trust me, I'll be here with a million and two million questions.. I really have to learn how to abbreviate really soon - is there some kind abbreviation dictionary or guide somewhere - it is difficult though after being an editor of documents half my life! but I will learn
it's just hard to keep up.. I think someone else asked about my pain meds - I certainly have them for night time, but the two that seem to help the most (Baclofen & Diazepam), I have to reduce to under half my dosage during the day because it clouds my thinking and makes me drowsy - and that is just not an option if I am going to continue running amd managing the ENTIRE business. Right now it is the ONLY thign I have to keep me going, my personal life no longer exist - my so-called 'friends' have dropped off like flies as soon as started using 2 canes and then just vanished after going into a wheelchair. My job has always the center of my life though, and now that I'm the leader of the family business (my Dad's job) it means the world to me, we were estranged for many years and we reconciled and became closer than I dreamt possible, he passed away four years ago and I started as a laborer and worked and learned everything from the bottom dredging in the mud of drilling foundations all the way to the top as CEO and CFO. I just couldn't imagine giving it up or putting it's fate in someone else's hands - it has taken years for my brother just to trust me with such responsibilities (he is 100% owner) - but I did it, and I did it well and helped build us to grow and begin to finally prosper and then 17 months ago all of this slowly started... I utterly refuse to go down without one heck of a fight! and in the same note I must sign off because I no longer have the strength to keep going or thinking(night meds). I have no words to express what it is like to be able to come here and just vent or tell my feelings or story or wwhateverer it is I am doing... Thank you all so much for providing this space/place to be able to share.. I promise to help support as long as I am abel, must say goodnight now... an thanks again, Don
