Not ALS - Not diagnosed

[Jannie_M]

Just wanted to give everyone an update.

It has been confirmed that I do NOT have ALS, but I do have paraneoplastic syndrome.
So, my neurological problems are the result of an undiagnosed cancer.

It is entirely possible to have the neurological symptoms and antibodies associated with a PND and not have identifiable cancer because the proteins associated with it act as an anti-tumor weapon, preventing the cancer from growing large enough to be found.

My symptoms will never improve, but as long as they can find the cancer and eliminate it quickly, they will not progress. Or, they will never find it and I will continue to digress.


This website has been a very educational and helpful resource as my symptoms have progressed.
Thank-you so much to everyone for the helpful insight, kind words, and encouragement.

You will continue to be in my thoughts and prayers : Jannie

 

[gracefullyteaching]

Jannie,
So happy to hear you have an answer and you may move forward with treatment. Best of luck to you.

 

[susanf]

Good luck to you.

 

[Al]

Thank you Janet for letting us know. Good luck.

AL.

 

[Zaphoon]

Janet, Thank you for such an informative post. I'd never heard of this before. I hope that with treatment, they will cure you.

 

[laurel]

Jannie good luck with treatment. I have only known of one person with paraneoplastic syndrome over on the CIDP forum. He had POEMS disease, and doctors had a hell of time diagnosing him. Check in with us to let us know how you are doing.
Laurel

 

[island]

Jannie I wish you all the best and that you will be cured soon
Hronn

 

[TedH5]

I hope that they are able to stop the progression quickly. Please keep us updated. I will say a prayer for your quick recovery.

 

[notme]

Hopefully they'll find it quickly. Perhaps a PET scan will help detect it. You'll be in my thoughts

 

[trfogey]

Glad to hear that you don't have ALS or other MND, but, of course, sorry to hear about the cancer. Good luck to you and here's hoping that further treatment is successful for you.

 

[rose]

Oh Jannie,

Sorry to hear it's cancer, but relieved that its not ALS. I know you were discouraged with the difficulty of reaching a diagnosis. As frustrating as it is, aren't you glad now that you went forward with seeking an answer?

I wish you the best. Please come back and keep us posted as to how you are getting along.

 

[notme]

I second what Rose said. Please let us know. Paraneoplastic is a double edged sword--hard to treat--but a warning of cancer--usually in early stages--which should make the cancer treatment possible.

My thoughts are with you. I've heard some very good things about the cancer center. I think they are only in 3 states--but apparently very, very good!