Scared and Overwhelmed

[ktmj]

Dennis, I hate you guys are going through this. I know my wife is going through heck right now too and I am not near what Rhonda is going through.

Have you thought of going to Jonathan Glass at Emory? Not to give false hope, but a second opinion to rule out any other of this neuromuscular crap might be useful.

 

[CindyM]

And to rule in any equipment or services that might be needed. Always good to get a second pair of eyes on the case, IMO!

 

[Dennis & Rhonda]

Hi,

No, we have not seriously thought about Emory. Another opinion might be good, but we have sort of received 3 opinions already. A neurosurgeon, neurologist, and the ALS specialist at MCG all thought it was ALS. Rhonda has been through so many tests already, that I would hate to see her go through it again unless there was a decent possibility of it being something else. Along with the regular blood tests to rule out other diseases, she had two EMG's, multiple MRI's, X-rays, and even a 24 hour urine test for heavy metals. They did a test for Lyme disease too. It's just too bad that there isn't a test to difinitively whether or not ALS is the culprit. I just don't know enough to say that all the other possibilities have been ruled out.

As for equipment and services, we are very fortunate there. We have been overwhelmed with all of the help we are receiving. Someone is coming to our house in the next few days to evaluate the home and give us suggestions. They are also going to bring her a brace for her arm to relieve shoulder pain, get her setup with a power chair, a 3-in-one commode, and a whole lot of other things. Home health care is being arranged and I don't know what all else. The ALS clinic at MCG has been amazing. They tell us what she needs and then get it for her. That's very good, because I don't even know what to ask for.

I'm really torn about this. I want to make sure that her diagnosis is correct, but I don't want to see her suffer through a lot of unnecessary tests. Thanks for the info. I will give it some serious thought and discuss it with Rhonda.

Take care,

Dennis

 

[brooksea]

Dennis,

Sounds like y'all are covered very well! Good luck to you both!

 

[Zaphoon]

Dennis,

I'm glad you are getting so much support!

I understand your feelings on going through more testing. I would think that 3 of the same opinions for the time being is enough, too.

I'm pulling for the both of you!

Zaphoon

 

[SteveS]

Sorry to hear about your wifes diagnoses. The fast initial progression was like that for my wife except it was in her legs. From being fine to a wheelchair inside of a few months. Things have somewhat leveled off for the last few months as far as I can tell or at least moving at a much slower rate. Maybe it is the Rilutek, I cannot say for sure. We are due back to the clinic in Feb to see how things are going. If the ALS clinic there is anything like the one we are going to you will be in great hands. Be strong for your wife and take care of yourself as well as her. Positive mental attitude goes a long way.

 

[John1]

... Things have somewhat leveled off for the last few months as far as I can tell or at least moving at a much slower rate. Maybe it is the Rilutek, I cannot say for sure.

Steve,

As I recall the results of the rilutek trials, there was no decrease in symptom progression observed. The only (possible) benefit seen was a very slight increase in lifespan of those taking the drug compared to the placebo group.

 

[Dennis & Rhonda]

Thanks SteveS. I am sorry to hear about your wife. I am really hoping that things will level off here pretty quick. The symptoms my wife is having were not unexpected...it's just that I didn't think it would happen so fast! Her left arm and hand were the first to go. They are completely useless now. She could curl her fingers for a few weeks, but now she can't move them. Now her legs are going fast. You can see the atrophy even through her clothes. The left leg is the worst with the right not far behind. Just two weeks ago she could go to the bathroom by herself. Then one morning she called me because she couldn't get up off of the toilet. A 3-in-one toilet has fixed that, but even that is getting difficult for her to do. She is now on a bipap at night and using a cough assist machine twice a day. Lately she has started having coughing spells while trying to eat. I am praying that these won't become more frequent for a long time. It just doesn't seem possible that she could have changed so much in such a short period of time.

God bless you and your wife,

Dennis

 

[Jules45]

Dennis and Rhonda;

God Bless you both. I'll pray for you.