diagnosis

[sisgldnhr]

ann arbor

Peg,

We go to our GP on Wed., the 27th. I will ask him to refer us to Ann Arbor. I'm going to call my insurance company today to see if they will allow me to take him there (which is a total crock...but thats another post). Ann Arbor is just 45 minutes further north than MUO.

Thanks for your input Peg.....it means alot to me.

Sis

 

[CindyM]

My thoughts are with you and your DH, Sis.

 

[sisgldnhr]

Thanks Cindy. You know every day I feel something different. I think I'm slowly grasping just where we're headed...and it hurts. My sister-in-law wrote to me yesterday and told me that I don't have to be strong ALL the time. I think.....yes I do!

Praying has really helped me alot over this past year. And the Lexapro hasn't hurt either


Sis

 

[Peg B]

Hi Sis,

Best Wishes on all of this. Keep us informed. Sincerely, Peg

 

[siuska]

Ann Arbor Docs are great...just zip up 23 and you will be there before you know it...

 

[Jantionette]

I am going to ann arbor too, I have a post where they were talkiing about how good they were. The doctors name is Eva L. Feldman so you know.

 

[CindyM]

Hi Jantionette. Welcome to the forum. Cindy

 

[Peg B]

Hi Sis,

How did the Doc visit on Wed go? Did you find out anymore info on your husband's condidtion? Did you get a referal to Ann Arbor U of M? Hope things are looking up for you guys. God Bless you both. Peg

 

[sisgldnhr]

Our family MD told us that Don is terminal, the Dr. says that he has up to 5 years. He said that the Neuro will most likely refer him to Ann Arbor. We have that appt. in 4 weeks. Don took the news in stride. He has such a positive attitude. But I know he is just as scared and uncertain as I am.
We had a couple martini's last night and he opened up a bit. If thats what it took for him to talk w/me about it, then so be it.
The 60 mg of Prendazone is tearing his stomach up. But he is eatting all the time now Our family MD gave him Nexum instead of the Axid the Neuro perscribed. Neither one is doing a very good job.

Thanks for asking Peg........Sis

 

[Peg B]

Hi Sis,

I am so sorry to hear this, but do not give up hope. There are many who were given the 5 year and have lived much longer. The one day at a time is the best. I hope you have lots of support at home and in the community and you get all you need. God Bless you and yours. Sincerely, Peg

 

[Peg B]

Hi again Sis,

Can he get the prednazone in liquid form or IV so it is not acting on his stomach? Just a thought. Peg

 

[sisgldnhr]

What a great idea Peg! The liquid steriods! We are supposed to call the Neuro this week and let him know how Don is doing on them, I will ask his nurse if we can get it in liquid form. That would be wonderful if they could do that. He has had h-pylori this past year and they've discovered that is what causes peptic ulcers. So he has a weak stomach anyway for the ulcers.

Thanks again Peg..........Sis

 

[sisgldnhr]

diagnosed

I talked with d/h neuro nurse today, to let her know that Don is having a hard time with the steriods (60 mg a day). Its tearing his stomach up! Lots & lots of gas, can't sleep but he has gained 4 lbs.
I also asked her about the Ann Arbor Clinic, she talked to the Dr. and he said he would send a referall for Don to go anywhere he wants. He said that since he can't get a DX for him maybe someone else can. I also asked for a Bipap machine so that he can get some rest at night but I'm told that he has to go thru a sleep study first.
Right now I feel that we should skip the sleep study and go straight to Ann Arbor.

Any thought on this?

Sis

 

[Peg B]

Hi Sis,

My two cents worth is to skip the sleep study. You can do it later if nedded. I had to change my appointment at U of M and in order to get both the clinical and the EMG/NCV objective studies. I had to move it from April 3 to May 1. So you may have to wait a whole month. Get it scheduled ASAP. So maybe you could a sleep study in if you have to wait a whole month for U of M. When I first went there I had a 6 week wait.

Also about the meds. I saw a French movie the other day and they mentioned that meds in Europe are often given in a suppository. So I thought of your husband. What did the Dr. say about a different form of the prescription? Remember I get it in IV form when I get the IVIG treatments. Take Care and thanks for the update. Peg

 

[sisgldnhr]

diagnosed

Peg,

I asked if they made the steriod in a liquid RX and she told me no. And didn't offer any alternatives. She did say that the Dr. wants him to remain on them for at least another 4 weeks.
I also need to call my insurance company about being able to go to Ann Arbor (when I called Ann Arbor Clinic they said that I need to get my insurance approval first). I know that we can go to Cleveland but I'd prefer Ann Arbor.

Don has an appt with Social Security on Tuesday, March 11th. If his disablilty goes thru.....then he could go to the clinic in Ann Arbor...no problems. I think its bull that our insurance gets to decide but thats just the way it is right now.


Sis