My appointment was scheduled for Nov 20-27. I have to agree to stay 4-7 days, but we have a problem, our insurance will not cover Mayo Clinic and we cannot afford to pay all out of pocket, so I am having to postpone until I can pick up insurance through my job. THat will be Jan. 1st. Once I do, then I can go ahead. So, I will have to wait until after Jan 1 to go, I will call tomorrow and switch the appointment. My husband is very frustrated, I know he's trying to make sense of all of this, but it's hard, he doesn't handle this type of thing very well, especially when it affects me, he is so afraid of loosing me. I talked tonight to him to try to get him to understand that I need to go and get this second opinion, I just can't take a chance on a wrong diagnosis, at least that's how I feel about it. Its my life we are talking about, he understood after I poured it all out to him. I don't want to put us into financial disaster with this either, so very hard. All I know is my swallowing is an issue and that's how my father started. Mayo has all of his records so it makes perfect sense to me to go there, if there is a family tie, they will be able to see it. THank you for thinking of me, at least I think you were responding to me? (If not, sorry to bother you with this looooong drawn out post!)
Would not waste your time and money on Mayo. We went there and they did not tell us anymore than our local ALS clinic here in South Carolina. DX is very hard to make until all sysmtoms are met, it seems.
Hang tight and order all 5 tapes from the National ALS Association, as they have more information, as well as, MDA that was valuable to us.
Which Mayo clinic did you go to? I am looking at the one in Rochester, MN. My father went there after 2 years of testing at University Hospital and Clinics in Madison, Wi and they finally gave him his diagnosis, that's why we were thinking of going there?
I hope that you and your little ones are well. I did send you a PM some time ago. Did you get it? I tried to fix my PM, but just looked at it again and it does look like I had another box checked that limited my PM's to my buddies only (and I have no
I have an appointment tomorrow with a lyme specialist and FINALLY have an appointment with Dr. Graves at UCLA medical Friday. I collected all my records and am ready! I pray I test positive for Lyme and can just get treated and start to feel better. I finally have been able to get on top of many of my symptoms... I can type mostly right handed.. I eat a little different, but I have actually gained some weight back....it seems like it helps if I raise my chin when I am swallowing and sometimes even push on the outside of my throat with my fingers when it feels like it is not going down.
Hey Quality...I understand you must be scared and just want some answers! Is there anywhere else you could go that would be good and would be covered..even if it is a bit further? What if you get a referral to your insurance company written directly from a doctor? Can't hurt to ask...sometimes these people just need the pressure. Good luck.
I guess I wanted Mayo because that's where my father went and if they needed to check family records, they already have them there. I have thought of some other places, I just want to make sure that where ever I go, they know what they are doing.
To everyone that is waiting for a Dx I found by the time I was DX my grandson could have DX me it was so obvious >So no matter where you go If the symptoms arent 100 percent clear to the doctors and their texts books you will never get one. And by the way I got a probable ALS ,Non committal bastards . Good luck and God speed I hope you get good news Pat1
Midnight - I read once, and only had to try this on occasion, that if you tuck your chin in, kind of hang your head down, it helps to swallow. I guess it brings your tongue a little forward. Just another suggestion!