My husband and I went to "the" appointment today... unfortunately, my labs from Athena were not back. Therefore, he will call when he receives them.
He thinks that inflammation may be the cause (specifically Sjogrens) of my SFN but he also reminded me that I may very well fit into the 30%, or so, category that is ideopathic. He assured me that he would continue to test me periodically if I fall into this category.

He prescribed Mestinon to see if it helps with the autonomic neuropathy and also referred me to his 'mentor', Dr. James W. Russell at University of Maryland. Apparently, he specializes in autonomic neuropathy.

He mentioned the option of IVig. Something to think about - I know it has been helpful for some, but I am going to see how the Mestinon works and wait for my labs to see if they reveal anything. Does any one here have any knowledge or experience on Mestinon?

I have been quiet lately, not feeling good... but have been peeking in to see how you all are. My best to you...

Mere

From what I have read on our Myasthenia forum, it is best to start with a low dose and titrate up.

You might post your question there, for opinions, etc. It is a very nice forum.
http://neurotalk.psychcentral.com/fo...aysprune=&f=77

Some there have started as low as 15 or 30mg 3 or 4 times a day.
There are side effects, one of which is increase GI transit.

Thank you Mrs.D. He did say to start at half dosage every 12 hrs. My full dosage is 60 mg every 8 hrs., as needed.

The first drug they EVER put me on for neuropathy was Mestinon. They put me on that before they ran any significant testing....it didn't do anything for me. From Mestinon, they started me on my first course of IVIG.

Cyclelops, have you had any bad effects from the IVig infusions? How did they infuse you the first time? My doctor said that the first infusion is done over a four day period of time...

Mere

It was a decision I made [thanks to the 'web'] rather easily? My options were steroids [not likely as I was already on the 'line' for osteo]; plasmapheresis or IVIG. The IG seemed the least invasive and actually the most organic? [If you can call 'pasteurized/processed blood product' 'organic'?] Well, you get my point.
For initial IVIG infusions they do DO it in a hospital or approved outpatient setting. WHY? some folks really react! to some pieces of the IVIG product. Those reactions aren't nice, truly - but are rare. After two plus years at a hospital for infusions, I've had one very bad reaction IN a hospital but was 'released' and left to go home after that...The staff has since been 'retrained' as I complained to the State Hospital Board... I had aseptic meningitis -a whopper of a headache! But, that was only once out of several years of infusions! It was a badly prepared and stored 'batch' and there are ways to tell what's good or not.
I now have infusions at home and the meds are delivered the day before, and nurse comes the next two days. This is great, as I've got to pre-med w/lots of benedryl to prevent any other reactions and I am one dishrag after infusing, to a happy dishrag! I used to feel uncomfortable about a stranger in my house/home when being infused? But the nurse I got is a treasure! And I know I'm very lucky to have her! You must make your own decisions tho? Also what your insurance can LET you do is also critical...tho I've found home infusion about 60% costs of hosptial infusions? Well, what your insurance company allows? IS what you get? Ask your Neuro's office - they are GOOD at that kind of stuff and to get the paperwork all lined up like the ducks they should be! Hoping you give it a try? Praying it helps! We shouldn't have to hurt so much! - 's and good luck to boot! - j