More confused than ever.....

[Just J]

We got some unsettling news yesterday. Its actually a bit confusing. We went to new doctor who specializes in ALS. He was pretty adamant that Mike does not have PLS but is showing signs of ALS instead. Needless to say I was a bit stunned to hear this. His reasoning was that Mike is not as stiff as most people with PLS and there is significant muscle wasting and rapid progression which is not typical of PLS. He felt Mike was showing signs of upper and lower motor neuron disease.

Anyway, he sent Mike for another EMG and the EMG Tech said everything was fine (not indicative of ALS). However, we later met with the ALS Clinic just for introductions b/c we will now see this new doctor and the clinic every 4 months. They did a breathing test and his breathing is at FVC of less than 70%. The tech said this is at the lower end of breathing in the “mid-range”, and was not a good result. So now I don't know what to think. I don't know if we'll hear back from the doctor before our visit in August.

 

[Zaphoon]

Judie, I'm sorry for this new, conflicting opinion. I don't see how they could come up with ALS without the EMG giving supporting evidence of lower motor neuron trouble.

I've still got some Gumby left in me and you probably wouldn't think I'm all that stiff. My stiffness has periodic times of exacerbation and then will let up.

My question for the doctor would be: "What evidence do you have to support the idea of ALS? What criteria has been met?"

It might look like a duck from a distance but when you take a closer look with the right pair of glasses, it could turn out to be some other kind of water fowl. Just a thought. At least one pair of glasses (the EMG) says it's not a duck.

 

[hopingforcure]

Judy,
I agree with Kim, the emg is the indicator here. What Doctor did you see this time? Were I should say? I know without indicative emg changes well it should still be PLS. I have never heard of anyone having a change in diagnosed without a emg change. What type of atrophy are we talking? Plser's do say that they have some atrophy, I have heard that. I am UMN dominant so I am a case of the different. Big Mike is similar to me..

 

[irismarie]

Oh, this is wretched. The docs are really not very good at this - and yet you hear of diagnoses being made on next to no evidence. Hope my tests tomorrow come up with a result of some kind so at least I can get some directed kind of medical support.
Hope you too get something solid so you know where you are aiming
Love

 

[indigosd]

Judi, I am just so sorry. sending you hugs!

 

[Twinsmom]

Oh Judy,
I'm so sorry for this torturous road. We've been through a very similar process, but with it STARTING with an ALS "probable" to "well...we're not sure, let's wait and see".

I've learned there is a big subjective side to the EMG/NCT test readings, AND, if the test wasn't done by a neurologist who specializes in this procedure, you can get varying opinions. Bottom line, though would be the reading of the EMG/NCT.

Prayers to you and your husband!
Peace,
Melody

 

[joebing]

Just J,

Im sorry to hear this news about your husband. I too, thought the emg had to be dirty?
How is it possible? Has the Dr explained any of this to you? Does he have weakness that has been clinically noted by the neurologist & if so why is it that the dying nerves are not showing on the emg?

My prayers are with you! Im hoping its an error,
God Bless,