They pushed it back till next Monday...hope it helps the SFN and I will keep the board up to date on the results...I watched her video once may watch it again while I am sitting on the IVIG drip...

Sven

Hi, Good luck with Your IVIG. I am almost in the same situation and got my first IVIG last week. History: My problem started seven years ago with pain in foot and then calves upon any movement, exertion (standing, walking, Exercise intolerance basically) gotten worse over years and affected back and hand muscle as well and become fatigue because of pain. Two years ago in columbia they did skin biopsy and they said I have SFN. Even though mine is basically caused by exercise which I could not see in SFN documentation a case like this.
IT is idiopathic. I saw an immunologiest that I can try IVIG based on somehow low igg count and see if it helps. My dosage was only 40 gram. I had a bad side effect and I did not notice any improvement yet but maybe still so early. She said I may need to repeat ivig to see if it helps at all.
How long before IVIG helped any one?
Does anyone had similar to my symptoms ? is it SFN?
Anyone can recommend any doctor which is both Neurologist and Immunologist? I live in NY
I tried reaching out to DR Oacklander but was told she is not accepting new patients

Thanks all

you could have both small fiber and large fiber neuropathy. your small fiber neuropathy has been confirmed by skin biopsy. have you ever had an emg/ncs (electomyography/nerve conduction study)? that test would show whether you have large fiber neuropathy, especially after 7 years. Just because you have been confirmed for the one doesnt mean you dont have the other also.

Yes I have done all the tests you name it emg, muscle biopsy, genetics testingdid not show anything. thanks

Jake,

I don't have experience with your symptoms, but can tell you that your IVIG dose is NOT consistent with that for neuropathy...so you may not notice any improvement. You said you are getting it for low IgG count, which is immune deficiency. The dose for that is 400-600 mg/KG whereas the dose for neuropathy is 2GRAMS/KG...3 times as much. If you are an average size male and weighed 180 pounds (81 KG), then you would be receiving 162 grams of IVIG...you are only receiving a quarter of that.

That being said, it does take time (months) for IVIG to work...it basically has to modulate the immune system.

You need to have your immune deficiency looked into, as 25 of people with immune def. also have autoimmune process. If your neuropathy is autoimmune based, then you really need a full dose for it to be helpful.

Hi en bloc
Thanks for reply. My IGG is slightly below minumum at 650. So actually I do not have deficiency but that is the only way to get the approval for IVIG.
Since blood test did not show autoimmune, I can not get high dosage, unless anyone has a suggestion.
and I am even afraid of the high dosage, even with this dosage I had bad side effects.
Does my symptoms shows SFN to you?
Thanks again

Did they do any pre-meds before your infusion? What where your side-effects? headache?

Also, just because your 'total' IgG is only a little below minimum, doesn't mean your subclasses are normal. There are 4 subclasses and you can be very deficient in one or more of them...making the total low. I am very deficient in three of the four and yet my total is still about normal. You need subclass labs to know the level of each.

Yes got pre med, and hydration.
bad Headache, muscle pain, nasya, ...

Most reactions to IVIG are rate related...meaning the infusion was too fast. As soon as you feel slightest headache, you should tell nurse and they should slow down the rate of infusion. Even after receiving IVIG on/off (mostly on) for 19 years, the infusion still starts out very slow and gradually increases as I tolerate it. Everyone is different and they probably did start it slow. You just may need it even slower at first.

There is also a difference in products. I have had more reactions with different brands (which have different concentrations). You may need a lower concentration. Roughly how long did your infusion take?

I just hate to see you give up after one infusion. Yes, those headaches are bad!! But it may just mean you need slower rate, different product with lower concentration or different pre-meds (I use Tylenol, Benadryl and IV steroids). But like I said, the amount you're getting won't likely help much with neuropathy...too small amount. So while you have the opportunity to try this due to IgG levels, might as welll find the right combination/product for you...just in case you can get approved for proper amount down the road.