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

Thank you. I have been hurting and feeling ill for so long... Sometimes, I don't realize how bad I feel until I have a 'good' day and then it is just like a teaser because it does not last. I am still on the fence about IVig and have another option to exhaust (Mestinon). My neurologist said that he can prescribe IVig for me and arrange it so that my insurance will cover it (I will believe it when it happens).

It is very reassuring to me to know that you are out there and that I can ask you questions about it... May I ask what type, or what, has caused your neuropathy?

Thanks for writing Dahlek, and I hope you are feeling well. back to you,

Mere

P.S. I understand how you feel about steroids. I was on 20 mg per day for arthritis (a couple of years ago) and it made me feel manic and it also made me cushinoid. I am now on 3 mg (a very small dose) and it is an acceptable dosage to me, but I would be very reluctant to take any more than that.

well, first e-mail me and then let's go from there?
I turned [eeeeekkkkk] 60 this summer while in rehab for a VERY BAD Osteo break.. The whole nine yards w/titanium and rods and pins and screws etc... Totally ickkky! It was NOT a FUN day by any means..
Osteo is something that Mrs D can be a whiz at, to degrees, but when I'd first had PN onset, I was put onpain pills [anti-seizure meds such as neurontin or lyrica] that literally suck calcium outta you. Ergo the first to show issues were my teeth to the comma behind the total dental bill sort. Next I was diagnosed w/ Breast Cancer and THOSE meds do an even worse # on the bones! So...I weaned myself off the 'pain' pills and gritted my teeth [which are still with me? Whew]
Thus before all this all above happened, I knew I was very borderline for osteo, and docs had been following me closely, [lucky to have not only good ones? but smart AND nice ones!] Soo the neuropathy was the 'only' issue then, but knowing I'd a family history of cancers and osteo's... My neuro suggested the IVIG, as I said..I concluded it's the most 'organic' of therapies...but! IT AIN'T CHEAP!!!
Here is a web site about costs.... half way down?
http://view.fffnews.com/?j=fe5915707...&WT.mc_id=&r=0
They are sponsors of IG LIVING magazine... http://www.igliving.com/
It's free to sign up? Its informative and it does have real live people to answer questions about WHY SHOULD I USE IVIG? and the like...they've been great for helping me on one occasion, and I've referred others to them and they've been beyond super!
All in all, it AIN'T CHEAP stuff, it's precious stuffs and for 40-60% of us it works! For me it does and I've a heap of immune issues that it addresses and helps keep me walking and plain old functioning!

's in the interim... I'll try to plug you into good research? But I mite have to actually work at it, and w/infusions? To get updated stuffs. Plus 3 benedryl each of my next two days I'll definitely be a zombie of sorts. Never know tho?
Don't be scared about it? It's kind of interesting at first, and then? boring after that, esp. when taking heaps of benedryl!
In the meantime? Know that I view my infusions as being 'refueled' and I feel soo much better afterwords!
Hugs and hopes for you for the interim... - j

I have had very little bad effect from IVIG. They do a loading dose to start with, 4 infusions over 4 days. That is what seems popular here, in our area.

I have had 2 loading doses, since they started it a few years ago, then stopped for several years....tried IV steroids...(16 weeks....never, ever again...I swear it damaged me.)

I did puke one day during the second loading dose after they decided to resume IVIG when my ANA went way up, but they were running it in COLD and fast, a big no no....I tried to tell them but the home care agency nurse argued with me.

I get it in an infusion center now and they are very careful. It takes 2 and a half hours to get it done. Sometimes, some days, I feel a bit funky, but in general, I tolerate it pretty well.

I would give IVIG a try before any other stuff. It works with your body.

Thank you both Dahlek and Cyclelops for sharing your experiences about IVig. I thought I had been through quite a lot but you both have had your fair share! What a terrible situation with the osteo break Dahlek... I saw my rheumatologist yesterday and he was positive in support of trying the IVig. He did mention that it can cause anaphylaxis and the need for Benedryl. Thanks for the links, I will take a peek at them.

I still have not received any results from my neurologist on the labwork from Athena... It may not make a difference anyway if the results are inconclusive.

I don't know if I can afford the IVig. I no longer work because of my illness.

Hope you are having a "good" day and that we all get through all of the crummy weather soon!

Mere