New Update

[L4dybugg]

Hello everyone. :smile:

We made it back home from Andy's second trip to the ALS Specialist in Nashville. We finally got an answer. Thank the Lord. :smile:

Andy had another EMG, this time the dr said there was a dramatic change. I do not have a copy of the EMG report to post as of yet, we forgot to get it, because we were taking in what the dr said, and we were so tired from the trip.

He told us that Andy has Inflammatory Myopathy. And that he will have to take Prednisone for the rest of his life. He told Andy he could do another muscle biopsy to find this, but he explained that it is spotty looking for it, it might not show up. Dr said there was several types of this, and no matter, the treatment will be the same. So Andy decided not to do another muscle biopsy.

Wright the questions are for you, can you tell me more about Inflammatory Myopathy, and what causes it? Also we do not like the fact about taking Prednisone for the rest of his life, is there another option? Andy said he will until he gets to feeling better, and then talk to the dr about other options. Dr said this was the best drug to treat this.

Any info you can give me about all of this will be greatly appreciated. Thanks so much.

Lori

 

[lydia]

Hi Lori,

So glad to hear the good news, what a relief!

Wanted to quickly comment that I have a close family member who has been on Prednisone for over 20 years (organ transplant) and while at first the side effects were awful, once the dosage was tapered off to an amount that minimized side effects while simultaneously managing symptoms it became very "do-able". You just have to get over that hump, and depending on how much the initial dosing is, YOU as his partner are going to need some comic relief (support) from friends and family in dealing with some of the more "interesting" personality side-effects. It has been 20 years for me, and I can still laugh (and cry) over some of the adjustments we all had to make while getting that dosage just right.

Again, what wonderful news. No ALS and something that can be managed with treatment.

Lydia

 

[awieleba]

Lori,

that is great news, all things considered of course. you were at an als specialist so you may want to find a doctor who deals with myopthies for more answers and treatment.

best of luck to you guys!

blessings!

april

 

[L4dybugg]

Thanks ladies

Lydia-

The dr did mention all the side effects. Can you tell me more about the personality changes I can look for?

April- Thank you, I'll do just that.

Yes we are so blessed and Thrilled no ALS. Was a tremendous relief, and a long scary time in our lives. That we can now put behind us. We did learn so much about ALS. and have got the word out to others about it. I will continue to do so.

Hugs Lori

 

[KANSASTOM]

That is great news, my sister in law has been on prednisone for almost ten years now, because of a kidney transpalnt (my wife was the donor), she has had no ill effects from it. I wish you the best.

 

[hopingforcure]

Good news, I know we have had a number of people on the board with Myopathy. Like someone else mentioned once your hubby takes the initial dose, and has it in his system it will be lowered, and become more tolerable. I think Prednisone has a lot of less side effects than some of the other steroid medicines. I am glad that we get news like this, it proves to many of the undiagnosed on the form, that many things can cause als like symptoms.. Keep us informed on your hubby..

 

[crystalkk]

Lori,

That's great news that's it's not ALS! Please keep us posted...

 

[Zaphoon]

I'm happy to hear your husband does not have ALS.

 

[planningguy]

Lori,

That is awesome news! I'm sure you felt a big weight come off your shoulders. Certainly not a cakewalk, but that it is manageable is great.

Take care,

Robert

 

[ktmj]

Wonderful news. Glad to hear that.

 

[laurel]

Hi Lori,
That is very good news. You should do some reading on long term corticosteroid treatment as there are numerous things to stay on top of i.e. bone density changes, adding calcium in the diet to avoid bone loss, regular opthalmologist visits to monitor for cataracts, being alert for stomach ulcers, watching for blood sugar elevations. So Andy will need regular blood work, regular eye exams , regular bone density screening etc. But it is all manageable by a good GP.
Laurel

 

[L4dybugg]

Thank you all so much.

I wanted to leave something for you all, I made this, feel free to use it to help spread awareness on ALS. Thanks for being there for me when I needed it. Hugs to you all. Love Lori

 

[rose]

Lori, what wonderful news! How great is that to have something that is treatable. Is he expected to be able to recover enough to be able to go back to his regular work schedule?

I am so happy for you both. :grin::wink:8)