Anyone heard from planning guy?

Status
Not open for further replies.

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,857
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
I'm just wondering if anyone has heard from him regarding his trip to Mayo!
You can PM me, if necessary.

Zaphoon
 
Last edited:
I have been wondering as well..... I know he said he had to do something for work while he was there and was going to combine the 2.
He was joking that he was only going to have to pay for 1/2 the airfare.
 
I have been checking the forum umpteen times looking for his update. I am worrying about how it went.
Laurel
 
me too! I am checking about 5x a day! I hope all is well with him and the trip!
 
same here,i left him a message on his profile.
hope everything is ok.
 
Not me . . . .and ditto April, that's the very reason I logged on just now! The cup is 1/2 empty part of me is fearing that he got really bad news and he can't bring himself to post about it yet :(
 
I don't think so...at least I hope not...I remembered about the work thing too...so hopefully that's it.
 
Update

I apologize for causing a ruckus and not updating sooner. I ended up having a lot more limited online capabilities than I expected in MN, and a couple of blow-ups back home at work had me using the little time I had with a connection to put out fires.

We just got in a little while ago (still not unpacked ;) ), and I noticed the PM alerts in my inbox. Needless to say, I am touched by the amount of caring and compassion I have seen and experienced on this forum.

So, with that, on to the update.

The Mayo was an incredible experience in terms of medical efficiency. What usually takes a month or more of scheduling and appointments can be handled in a few days. Unfortunately, the results were not everything I had hoped for. I'll get the good news out of the way first. The neurologist does not think its ALS :).

As before, my reflexes continue to remain normal. I had a repeat NCS and EMG that focused on my left side, a few spots on my back and shoulder, and a stab into thenar area (OK I will revise what I said about the EMGs in the past. They are mostly uncomfortable, stabbing the thumb pad does hurt.) This results of the EMG were "normal."

I met with a speech pathologist who reviewed the swallowing difficulty, and we repeated the full swallow study. More good news, still no aspiration, and mechanically everything seems to be working within the normal range. She said that she did not she the trouble with initiation that the earlier swallow study showed, but did caution that what we had was a snapshot in time and that depending on the cause swallowing difficulty can ebb and flow.

I think more for kicks than anything else, the endoscopy was repeated. I still do not have the full results (the Dr. and I have missed each other a couple of times), however the initial assessment was good. The neuro also did a repeat assessment for MG antibodies, which was also negative.

Now the frustrating news. The neuro said that he was not sure what was going on. The muscle lab did see some anomalies with the biopsy slide, but felt that they were more likely to be artifacts from the slide preparation. Its possible that my pernicious anemia proceeded my infection, and there was more going on behind the scenes that the infection compounded. Rogue virus is still a possibility. At this point the neuro felt wait and see was the best approach, but reassured me that after 18 months if it were ALS there would be some significant change in fuction that could be picked up via EMG or other test.

Hopefully, we are approaching a plateau. The blessed me gradually working back into my exercise routine, and seeing what happens. He cautioned, though, that I should start with walking, and when I could walk a brisk mile and still feel fine afterwards, I could work on to other things.

I'm going to take the trip as a win. No I don't "feel" better per say, but I do feel reassured that it is something that I can live with, or will eventually get better. Don't worry about me going anywhere in the meantime. I still have to design the undiagnosed patch and theme song :)

As always, best wishes,

Robert

PS My wife and I got to eat at Fogo de Chao. We met in Brazil, so it is a wonderful way to reminisce. Plus when you speak Portugeuse to the native servers, you get the royal treatment ;)
 
Robert,

Good to hear back from you! The "no ALS" part is very encouraging! Hopefully the diagnosis will be just around the corner with treatment to shortly follow.

Thanks for the update!
 
Robert,

Happy to here they don't think ALS.... I bet you never thought a bunch of people you never meant would be so worried about you?
What is Rogue virus?
 
Ok...I'm happy with the no als thinking as well!

So..is the next step kind of no step at all? Get back to "life" and see how it goes?

Glad you guys are back safely!

Tracy
 
Thank you all for the happy thoughts.

Tracy - Yes I suppose it is "no step" for the time being. I'm trying to put myself in a Zen frame of mind, and for the most part am suceeding. The nagging doubts won't do any any good at this point.

Crystalkk - I should have said "a rogue virus" meaning just some random thing running amuck. I didn't mean to make everyone think we had one more thing to worry about besides swine flu.

Take care,

Robert
 
hi robert,good to see you back safe and ok.
sorry you did not get more answers,that is so frustrating but at least no als.
we are always here for you whatever:razz:
 
glad everything turned out ok with you, hope you find answers soon, Margaret
 
Robert,

I am glad that they dont think ALS! I do understand that not getting a diagnosed is a little bit of downer, as far as something treatable or manageable. Are you glad you went? I had often thought of going in the summer if things dont start to get better, but if I spent a week there and came home with no diagnosed, I think my husband would really mad! My only hope would be to find something, anything that could explain this.
Did the doctors agree that there is something definitive going on?

For exercise routine, have you thought about swimming? Well, I hate swimming but started doing that 3x a week with the hot tub for aching muscles and saunua in hope for sweating out toxins. IT has been good. I never feel sore or hurt, and it is easy. You can move so freely in the water and go at whatever pace. I can even do walking lounges, I cant do those out of water. I do alot of walking as well (well, ok..shopping at mall/walking) but with the swimming it feels better for my arms as well. If my neck feels weak, I can go onto my back and do a light and easy back stroke. Just something to think about with getting back to exercise. Plus, my kids love going to gym and they have a kids pool as well.

Good luck, I understand everything you are feeling.

~april
 
Status
Not open for further replies.
Back
Top