diagnosis

[sisgldnhr]

Dx

Well that biopsy results may be in but the surgeon isn't telling us the results. Don's appt. this morning was to check the area's that was operated on! I wasn't a very happy person when we left the Neuro-Surgery Dept. today. Our family Dr. could have checked those incisions and I wouldn't have had to drive 2 1/2 hours and pay someone to run my business for those hours! Guess I'm learning how the medical world operates. Very, very slowly........

Sis

 

[crystalkk]

Sis,

I would be very frustrated as well....
Did you call the dr that ordered the tests is is the one that is supposed to give you the results.

 

[sisgldnhr]

Dx

Crystal,

Yes I did...... they told me that they don't give biopsy results over the phone. We see the doctor that sent us to the surgeon this coming Monday. But I am going to call my family Dr. and ask him to fax a records request. Don't know if they will comply or not.

sis

 

[Lorie]

Sis

Sis,
If you like and trust your GP. Use them as much as possible. Tim and I both have the same GP. She is wonderful. What ever we need, we get. Tim has an ALS doc we have to see because of MDA help. We don't like him. At this point what can the ALS doc. do. I keep ahead of the equipment Timothy needs. All I have to do is call the GP. She writes a prescription, ASAP. I do more than the ALS doc. does. Maybe I should send him a
bill (lol).

Speaking of Biopsy's. When Tim had his last summer. We went to the appt. to get the results. We were sitting outside the Doc's door. He was scanning down Tim's results quickly and then called us in. He wasn't even prepared. This is someone's "Life" we are talking about. I let him know about it to!

We definetly have to stand our ground! Just a number. And they submit the Bill and get paid.

Maybe the Lab. makes a difference. I am suprised and skeptacle. Who knows?
What Hospital was it? Cleveland Clinic?

Lorie

 

[sisgldnhr]

Dx

Lorie,

We're fortunate to have a GP that we like too. He has been there for us since this all began. I can call him on the phone, tell him what I want and we get it. I'm sure that once we get Don's DX we will be seeing/talking with our GP alot. He told me several months ago that I can call him at home and he will make a house calls if need be. Isn't that amazing in this day & age? He is really worried about Don, everytime I go into his office he gives me a hug and reminds me that I am stronger than I think I am.

Thanks for your feedback Lorie......it helps.

Sisgldnhr

 

[sisgldnhr]

Dx

Lorie,

Don is going to MUO (Medical University of Ohio), we had the choice of MUO, Cleveland Clinic or OSU. We chose MUO because its an hour away versus two hours. But we have discussed moving on to Cleveland Clinic if need be.

Sis

 

[crystalkk]

Sis,

I have been praying for you and your husband about the biopsy results today.
Please keep us posted with the results..

 

[Lorie]

Sis

Let us know ASAP! We are concerned. Take Care!

Lorie:-D

 

[sisgldnhr]

The good news is......Dr. Prizada does NOT think that its ALS. There is something wrong with Don's muscles, he just doesn't know what it is. The nerve biopsy came back good, where as the muscle biopsy came back inconclusive. Dr. Prizada has put Don on 60 mg of Prendazone (sp) a day to try to build him back up. He wants to see him again in 6 weeks. I pray that the steroids help.

Thanks so much for your thoughts and prayers!

I will keep updating as we get thru this...........sisgldnhr

 

[sisgldnhr]

Also........I asked about Lyme Disease since whatever is going on is still a mystery. He went back thru Don's bloodwork and he doesn't not have Lyme Disease either. Here he had already tested him for that.
Don's muscle enzyme level is still high they just don't know why.

Sis

 

[sisgldnhr]

Okay......now I'm really confused. I stopped at our family physicans office this morning to tell him what happened yesterday and to tell him the biopsy results. After I relayed the information to him, he told me that the information was not correct. At that point I was stumped! He told me that they had faxed the biopsy results to him and that Don has a MND, I can't remember just what they called it but that whatever they called it...but that it is terminal.
I just called our family Dr.'s office to have them fax me those results so that I can call MUO and ask them just what the heck is going on.

Also our family Dr. feels that Don should be sent to a larger more specialized medical facility.

Sitting here in shock.........sis

 

[crystalkk]

sis,
take a deep breathe and please keep us posted......
hopefully the dr at muo has a good explaination
there is something i always learned ask for a copy of the report.

 

[sisgldnhr]

I just received that fax from our family Dr. Under diagnosis it states the following:

A. Nerve, right sural, biopsy:
-no significant pathologic change
-some freezing artifact present
B Muscle, right deltoid, biopsy:
-severe denervation atrophy.


What does this mean?

Our family Dr. explained it to me like this..... lets say your muscle is a plant, your blood is the water and your nerves are the fertilizer. Don is not getting any fertilizer therefore is muscles are deteriorating.

Sis

 

[Icanmanz]

Sis, I am so sorry to hear this. You and your husband are in my prayers. Keep us posted! God bless!

Irma

 

[Peg B]

Hi Sis,

I just read all the posts. I am so sorry to hear all of this. My prayers too go out to you and your husband.

You stated your Doc wants you to go to a larger facility. Are you very far from the University of Michigan in Ann Arbor, Michigan? It has an excellent ALS facility. Everyone has been very personable and skilled. I get full reports as does by family Dr. When there was a glitch with my getting the last report the liason nurse, sent it to me immediately via email. The head Dr. has called me back during the day and corrected a report over the phone. They answer all of my questions in detail.

God Bless you both. Sincerely, Peg