Treatment Options????

[cathyst]

I am rather new to this forum and autonomic dysfunction.  It seems to me that there really is no treatment available.  I am willing to travel.  Can anyone tell me if they found a GREAT doctor that really helped them, other than simple symptom relief.

My MS specialist at the University of Miami recently dx'ed me with autonomic small/large fiber neuropathy with motor neuron involvement.  She couldn't answer any of my questions and said that I have to go to the Mayo/MN.  Unfortunately, they responded to her letter stating that they cannot help me.  I assume it is because I am so far along, pretty much bedbound.

I have so many unanswered question and obviously hoping for some kind of help.  It seems to me, reading through the posts, that most go to the major clinics for a dx, not necessarily getting treatment.

Is there anyone that can tell me if there is a treatment that can actually help?

Also, has anyone heard of Dr. Charles Thompson in Pensacola Florida?  I hate to spend the thousands of dollars only to find out that they can give me meds for "some" symptoms.  I know from the past four years, there doesn't seem to be anything to help with the worst symptoms.  This is all very discouraging!

Any  help would be greatly appreciated!

Thank you-
Cathy

[cathyst]

Thank you SO MUCH for your letter.  It was what I was hoping to hear.  Please let me know the name of your doctor at the Cleveland Clinic and I will call ASAP.

I am horribly sick today, otherwise I would write more.

Thank you again!
Cathy

[AireScottie]

I'm on my way out the door to a long day at the doctor, but wanted to say some things quick.  There CAN be treatment for autonomic dysfunction!  I had worsening symptoms for years, got mad with just treating symptoms, went to Cleveland Clinic, got diagnosed with small fiber neuropathy, and had extensive tests to look for a cause.  There are a lot of causes for peripheral neuropathy, although doctors can't always find one.  Mine turned out to be Sjogren's, which can at least be treated to keep it from destroying more nerves.  My neurologist says there's actually a fair chance that I could start regrowing nerves once my immune system stops attacking them.  MedHelp has an informative page on Peripheral Neuropathy in the Health Topics section.  When your doctor diagnosed your neuropathy, did she do an EMG (for large nerve) AND a skin biopsy (for small fiber)?  I know it's worse if there's motor neuron involvement, and maybe you can't regain what you've lost, but it seems like something could be done to keep it from progressing.  Did your MS doctor run tests to look for causes of the neuropathy?  Is she saying it's from the MS?  Feel free to send me a private message to discuss.  If nothing else, I can give you the name of a fabulous small fiber neurologist.