NeuroTalk Support Groups - Discharged by my neuro

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Quote:

Originally Posted by beatle (Post 1137311)

I have been discharged by three neuros since there are no more tests, my diagnosis is confirmed and there is no cure or treatment. My PCP prescribes meds for the symptoms and well, that's about it. Now I wait and I wait for new treatments to come to market. I sure wish they would hurry. :cool:

Do you mean discharged as in the neuro doesn't want to see you for followup appointments once a year?

Quote:

Originally Posted by Billylyne5 (Post 1137245)

I challenged the rheumatologist about her attitude of denying I have sjogrens because of negative bloods as even the NHS website says that 40% of people with sjogrens have normal bloods, but she said no she would never say I had it without positive bloods so she won't treat me at all,she offered nothing, even my ophthalmologist said you don't need positive bloods to have sjogrens, but she said she can't diagnose it, but she said the treatment for my eyes
She agreed I have lots of sjogrens symptoms though lol

I can't believe it. I have just read 4 books written by rheumatologists and she is so wrong. How can she make that statement? I'm really mad about it. Can you go for a second opinion? :mad:

Quote:

Originally Posted by Healthgirl (Post 1137481)

Do you mean discharged as in the neuro doesn't want to see you for followup appointments once a year?

He doesn't want to see me again at all as he said there is nothing he can do, he has decided I have SFN and that's it.

*admin edit*

II have to say this: Overall one great doctor saved my life, but i have found doctors are incorrect too. we need to try to find a second opinion, or else we are doomed.

The stuff posted at NIH is the result of scientific experiments and evident, so its likely to be address there too...look it up, print it and send it to get a second opinion.
Oh, one more thing: Before you raise a hell storm, ask here help based on your findings. don't blame because you will hurt their ego and they become defensive. Try to ask for help too, i am between that and loosing patience sometimes with the insurance doc, who has a difficult job to do, but I am in the one in pain, not him. Just woke up from a forced nap again, because my eye is constantly sore and my face hurts and sense are messed up. Don't quit on yourself, stay strong. this is an opportunity for you to become even better! :)

Quote:

Originally Posted by Healthgirl (Post 1137485)

I can't believe it. I have just read 4 books written by rheumatologists and she is so wrong. How can she make that statement? I'm really mad about it. Can you go for a second opinion? :mad:

Quote:

Originally Posted by Healthgirl (Post 1137485)

I can't believe it. I have just read 4 books written by rheumatologists and she is so wrong. How can she make that statement? I'm really mad about it. Can you go for a second opinion? :mad:

It frustrated me a lot, I am going to ask my GP to refer me for a second opinion, but who knows the same could happen again as its pot luck who you get to see 😐

I wouldn't mind so much if they would at least try and treat symptoms without a diagnosis but she won't even do that, she just said I don't have anything she can treat

Quote:

Originally Posted by Billylyne5 (Post 1137551)

He doesn't want to see me again at all as he said there is nothing he can do, he has decided I have SFN and that's it.

This is what I was told as well. After about a year of testing, I was referred back to my PCP for symptom management. In my experience, seeing neuros was for testing and diagnosis, nothing further.

Good Morning Billylyne :)

Quote:

Originally Posted by Billylyne5 (Post 1137551)

He doesn't want to see me again at all as he said there is nothing he can do, he has decided I have SFN and that's it.

I have SFN and my neuro released me after 10 months. He only uses the 3 major drugs for SFN, gabapentin, Cymbalta and Lyrica. I got up to 2700 mg a day of the gaba and then had to titrate down to my current level of 1800 mgs a day. Anything over 1800 mgs and I 'hear voices/music' that is not there :) Cymbalta over 30 mgs was the same way and Lyrica gave me a horrible stomach ache. So he released me on the 1800 mgs of gabapentin and told me to get a pain mgmt. dr. After being told the same thing by my PCP and foot and ankle dr I am finally in pain mgmt. and have been since last October.

The only dr's I use now are PCP and pain mgmt. dr. I have no A or C fibers left in my feet via skin biopsy of ankle so there is no chance of these nerves regenerating.

Take care.

Debi from Georgia