NeuroTalk Support Groups - Mayo, a long shot or worth a shot?

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- - Mayo, a long shot or worth a shot? (https://www.neurotalk.org/peripheral-neuropathy/91775-mayo-shot-worth-shot.html)

Quote:

We all want answers and cures.

hi there

Sure, we all want to be cured, but even having a cast iron dx like I do (autoimmune neuropathy caused by my lupus) and state of the art treatment (rituxan, at $20,000.00 an infusion) my neuropathy is still progressing. Especially my motor symptoms.

So, even if you do find out what is causing the neuropathy and treat it, there is no guarentee it will help it let alone cure it. It hasn't with me.

Personally I wouldn't bankrupt myself hunting for a cause, but that is easy for me to say seeing I know what caused mine. But then again I don't know what caused my epilepsy, so perhaps I do know what it's like.

best of luck with it all

hth
raglet

Quote:

Originally Posted by Herco (Post 532227)

Do you mean that 95% of the time a cause is not found and you're left with treating the symptoms? I fear that is the reality with neuropathy. Thanks for your input.
Keep picking and grinning,
Herco

I mean that 95% of the time,
the treatment is basically the same,
whether the cause is found- or not.

Hi, Doesn't Lupus progress anyway regardless of any kind of treatment? That's what I understood from my friend who had it. And from what I have read about it. Just curious.

I also believe that if one can find out what is wrong with you, at least you know that, even if there isn't any treatment available. There is no treatment for me. Much research going on and hopefully there will be a breakthru. From what I have seen, there is research ongoing for Lupus as well as other diseases.

Quote:

Originally Posted by Raglet (Post 532401)

I see Dr. Ray at Marshfield Clinic EC center.
(its the only female neurologist there is, so if you wish to have a male this isn't your neurologist)

She has no problems bumping your appts. up.
And since I've figured out what I'm actually being tested for (I had minor confusion) she really does go by the book, and knows what she is doing.

Quote:

Originally Posted by Herco (Post 532219)

Thanks for the reply, daniella.
I live in a mid-sized central Wisconsin city about 3 hours from Mayo and 3 hours from Milwaukee. I guess I'm not real confident with the local medical care. With neuropathy where do you draw the line? The term idiopathic is hard to accept. We all want answers and cures. Anyone with pn just wants it to go away. Family and friends keep urging me to find the doctor with the answer. Sometimes it seems as if they blame me for not trying hard enough to get better. I'm tired and confused. Hard decicions have to be made. Input from fellow forum members that have grappled with the same issues is much appreciated.
Thanks again,
Herco

Hi. I did not realize so close. I have traveled to many places and Cleveland was 3 plus hours from my house and some others out of state. I think for me what I waited too long for was to go to an anestesolgist. I had such extensive testing and multiple opinions from neuro's etc but needed someone to really work with me on meds and treatment. I understand some family. I try to focus on my mom who is my strength and hope. My gramps and a few others balme my past for why I am like this or feel I am not doing everything to get well. I have tried to educate them but at this point I just accept they will not change and find other supports. You can email me if you want too. Nothing like someone who is going through similar for support. Hang in there