After all the tests....

[Hi Skyehy]

I'm back after seeing the best neuromuscular specialist in OK at the M D A/A l s clinic. He did thorough blood tests, mri's w/wo contrast on brain, neck, thoracic area, EMG, etc. He admitted even he is stumped. He can't find anything wrong!

But yet I can't walk and am partially paralyzed. He said I should go to Mayo. But, I'm thinking of giving up. It makes me feel like an idiot when they say all tests are normal except for the basic neuro exam when I have no reflexes in my legs and paralysis. When do you stop searching for a diagnosis and give up? It's so maddening!

Thanks,
Kate

 

[oscar1]

so sorry kate . I am there with you too . Went to a new neuro yesterday who clinically could see lower motor neuron symptoms . now going thru my third round of tests but i wouldnt be surprised if there is no diagnosis.
Maybe try the Mayo and then live life the best way you can till there is a major change.
Such a long frustrating process
god bless you Margaret

 

[edwards5257]

Yes, so sorry Kate. I have no diagnosis, am no better and see my neuromuscular specialist next week in St. Louis.
I too wouldn't be surprised if NO addl tests are deemed necessary for me. He and I will talk and I will ask questions
and he will examine me more perhaps. I am at a loss also. And yes it is frustrating, scary, hard. And this is the second
opinion doctor.

 

[Grateful]

Kate

I don't think that you should necessarily regard not going to the Mayo as 'giving up'. If there was a hope that the Mayo could find a treatable condition then, if I were in your wheelchair, I'd go for it.

But if you are reasonably sure that you have had all the tests there are, and that those tests were properly conducted and interpreted by competent people, then it might be better to try to get to grips with what you have rather than expending energy trying to put a label on it. It's a rotten situation to be in...

 

[Tokahfang]

I'm a big fan of living with what you've got, once the treatable options are gone. Does he know of any Mayo can test for that he can't? If not, perhaps it would be good to settle down with an SCI-experienced physiatrist and learn to live with us wheelies. (Carecure is a good resource, too, you'll get good advice and such without much worry about what is causing your paralysis.)

 

[Hi Skyehy]

Thanks for all the replies. Guess I'll just go on with life and make the best of it. At least my boys are healthy. I don't have the energy to keep searching when all tests have been done. This last doc was #4 or 5. I've lost count now.

Kate

 

[Grateful]

Kate

The fact that you are able to focus on your boys' welfare in the midst of all this is pretty amazing; you're not a quitter. You are choosing the battles you need to fight, and passing on the ones you don't, which is also pretty amazing.

You must be very tired of it all but I know that there's a lot of good advice available here for you, starting with Beky's post above, to help you onwards. And, of course, I wish you the best of luck on your journey...

 

[Tokahfang]

That is completely understandable. I spent years as a para, with all the joys and tribulations that brought, and if you ever need someone to rant to or ask where to find good advice of, shoot me a pm/visitor message.