The unexpected detour

[planningguy]

Wheeler - Hopefully you will get some better answers soon. I have decent insurance, and a reasonable job, and this makes a dent.

April - My ENT blessed me structurally as well. He thought the swallow trouble was likely to be more globally muscular or neurologically related. Have any of your doctors speculated as to why you are mainly seeing atrophy/problems in the joints?

Robert

 

[awieleba]

Robert,

No, they have not. That is why I am going to CC. I have moved back the date to March. I am really leaning toward some stange muscle like illness (myopthy or autoimmune). I think that I would be worse by now if it was MND, it has been a year. I am ALOT weaker and cant do things but overall I dont think I should complain in contrast to those pals on here. I will go to CC and then I am done, no matter what they say....

I just feel happy that I am able to be with my kids and love them and hold them, that is all that I care about,, OH and of course my wonderful hubby! I just honestly am getting to point of not caring what this is. It goes against my 'need to know' everything personality but I just have to get on with it, ya know?

I wish you all the best and I can relate to you as you have 3 young kids as I do, and alot of similar sx. But I know that does not mean anything at all as far as diagnosed........

We will have to see where this takes us, and in the meantime I am really coming to grips and just being happy to be here!

Bless you

april

 

[planningguy]

Well, it was an interesting trip to the local neuro today. He read over the file with me there one more time, we talked about everything that had been ruled out (which includes ALS based on the clean EMGs), and he said without much ado or me bringing it up, "Let's refer you to the Mayo..."

When I asked if he thought it was overkill at this point, he said no. He thought the Mayo would repeat many of the tests we have already performed and give us a good update across the board, as well as perform what few remaining tests we have not seen. He also thought it would be better than going to just a neuromuscular specialist because there would be more opportunity for a multi-disciplinary approach.

So I guess they're sending off my records today for the Mayo's review. I have no idea how long it takes for them to decide if I'm interesting enough. I've heard different things about the different campuses, but my neuro is a Mayo classic kind of guy, so he's referring me to Rochester.

Not much in temrs of an update, but I guess I'm moving forward.

Take care all,

Robert

Edit: I just realized this is post number 400 for me. Now I just need to make 100 random comments/unbirthday wishes to reach the coveted senior member status... Darn it! I should have made this observation a separate post

 

[ktmj]

Well, I see the count is now 402, so you are on your way.

Best wishes, my experience at Mayo (Jacksonville a few years ago) was a positive. Don't think you can get more comprehensive than that.

 

[rose]

Robert, that's good ~ dare I say even great!, and about time. I'm glad you're going for the broad spectrum appt route instead of just neuro-muscular. I, in retrospect, wasted valuable time in diagnosis because of my original doctor's thoughts being autoimmune, and we kept going down that road over and over (and over) again. On the other hand its not like it changed the outcome for me either. :neutral: It will be in some ways like a clean start for you, especially if tests are repeated. Hopefully the wait won't be long. Let us know

 

[awieleba]

Good luck at Mayo! I hope that it wont be long to get into Mayo.

 

[Zaphoon]

Robert,

Congratulations for being well on your way to senior membership status. It makes me feel good knowing I've crossed that milestone!:razz:

Oh, I guess I should say something here regarding your ongoing diagnosed process. May whatever it is just go away and leave you with nothing to have diagnosed.

Zaphoon

P.S.
You can add another post to your count by commenting on what I've just posted. You know, "Thanks for your kind words, Zaphoon." It will make me feel good and add to your number count.

 

[planningguy]

Thank you for your kind words Zaphoon... I feel like I am learning at the feet of a master

Robert

 

[sdsyd]

Robert-

Well, at least you are getting to see all 50 states on your journey to diagnosis? I wish you the best,best,best of luck. IF you need any help with directions to Rochester, or help with navigating the Mayo Clinic, let me know, as I was there in June and somebody here on the forum gave me a couple of helpful hints. I liked the Mayo clinic itself, just not the particular Dr. I saw, and I know some AMAZING things happen there. I am glad they are encouraging you to continue your search.

Love,
Cindy

 

[sdsyd]

P.S. I have abook Called "At Jesus' Feet"

 

[lostinlouisville]

Robert

Just wanted to say I hope all goes well, I know it has been a long journey and you have done great during it.

Cindy, I also wanted to tell you I find you very incouraging to everyone and very sweet.

Renee

 

[planningguy]

P.S. I have abook Called "At Jesus' Feet"

Uh oh, looks like I might be heading into trouble again I hereby swear off of any expressions that might have a religious connotation.

I occasionally write legal contracts, and have been known on occasion to slip in the forfeiture of someone's immortal soul into the penality clause. I do it to give my office assitant, who has a pretty stressful and sometimes unappreciated job, a quick laugh while she's proof reading. Just gotta make sure to delete them from the final copy we send to the other party...

"And how exactly were you planning on collecting on my client's immortal soul?"

"Well you see I have this mason jar, and I've found one heck of a collection agency..."

Take care,

Robert

 

[planningguy]

Sincerely though, thank you to everyone for the well wishes and good thoughts. It will be nice to get another set of eyes on everything, and I'm really confident we can get to the bottom of this, get everything back in order, and be back in the saddle full speed ahead.

Ate mais,

Robert

 

[brendapals]

good to know you're not falling off the wagon, uh, I mean horse!:-D

 

[planningguy]

No word on the Mayo yet. Just wanted to post that I threw up a couple more picks of the kids.

Take care all,

Robert