Update from Hong Kong....

[lotusbri]

I flew all this way for the doc to dismiss me, without so much as a basic physical exam, only to tell me I'm depressed and need Cymbalta. I don't have the energy to get into all of the reasons he is wrong, but for now I'm going to get off this board and just pray my latest symptoms do not get worse. I'll follow up with my neuro in the states when I go home this summer.

I'm so weary......
So, so weary : (

Thank you all for your support and kind words. I will continue to pray for all of you impacted my this hideous disease.

 

[oscar1]

feel really sorry for you. feeling that no ones listening is horrible, hope things get better in the states. margaret

 

[Grateful]

I know that this is hugely difficult for you to deal with but the neuro in Hong Kong knows that you do not have ALS because your EMGs show that you do not have ALS. Wright has explained that to you, and your neuro in the US is going to take exactly the same view.

I don't know whether you are depressed or not but there are no symptoms which would override the results of a correctly conducted EMG when it comes to diagnosing ALS. At some point you have to accept that, and your life would be a great deal easier if you accepted it now. Otherwise you are going to carry on freaking out not only until you see a neuro in the US but after that because the neuro in the US will regard the EMG results in the same way that the neuro in Hong Kong did.

There are quite a few people destroying their own lives because they are convinced that they have ALS even though the gold standard test of the ALS clean EMG plus absence of clinical weakness says they do not. You do have a choice as to whether you are going to be one of them...

 

[notme]

Hi

I'm sorry, but you didn't need a neuro or a flight to Hong Kong. You need a generalized workup and maybe a full spine MRI.

Personally, my vote is still in for fibromyalgia personally, if heart stuff was ruled out. Did they only do a tilt table test? Just how low is your BP? How bout your blood sugar?

I don't believe you have ALS at all, but if you're not simply run down, you could simply have a severe deficiency in a nutrient like B-12.

 

[Luke]

Kudos, Grateful. Tough love is still love.