Sunday, September 21, 2008

Tomorrow, the future, and IVIG

It would appear that I have been quiet here as of late, but in reality I have been hard at work on a couple of posts that I just don't feel make all that much sense. I'm sorta of obsessing. Replace obsessing with just being ridiculous. Go figure a guy who spends most of the day wishing for unquestionable proof of Bigfoot being ridiculous. I want to be clear and concise for my those of you who read my mindless twitter. What is a Bald guy to do? "Grow some hair." you say. Yeah, thanks, I wish I could.

Anyway, I've been feeling okay as of late, not great, okay. My eyes are still really out of whack and the pins and needles are pretty persistent. The limp in my left leg comes and goes, mostly comes when I go, and tomorrow starts the great IVIG experiment of 2008.

I'll be honest I'm a bit apprehensive about the whole thing. It seems there is very little on the internet about the treatment in relation to MS. It is a controversial course for my disease, so they say. Not because it could hurt, but they don't know if it has any real merit.
Well I figure like I tell my bartender, I'll try anything once. I am then of course reminded that I don't drink and I should stop telling my wife to "put it on my tab". She's not a bartender, nor a server of any kind, and quite frankly she is tired of me never paying my “bill”. Right, well they tell me that it is worth a shot. Both of my esteemed neurologists seem to be in agreement on the topic. The other upshot is they tell me that there are very few side effects, but according to the internet that isn't exactly true.

Allow me to get off topic here for a minute and let me tell you how much I love the internet. If you look long and hard enough you can find anything on here. You need to prove a point just keep clicking and eventually you will find some sort of irrefutable supporting evidence. The great thing is that anyone can write anything carte blanch on the interweb. The terrible thing is that anyone can write anything carte blanch on the interweb. With the advent of Wiki and similar sites, historical fiction just got a new place in the roster. Hypochondriacs unite! Never was there a more comprehensive catalogue of ailments and disease right at your finger tips. Furthermore, that proof for Bigfoot, I think I just got a lead, but I'm off topic, sorry.

Anyway, tomorrow at 8:30am I have a date with a needle and a large bag of antibodies. I pasted some info below from the MS Society web page. Below that I have pasted some info from some other page, that I'm not entirely sure I trust but the crazy green background and 80's style headline font really screamed for inclusion. (I just included the info. You will have to dream about the font)

(from the MS Society)
Intravenous Immunoglobulin (IVIG)

Immunoglobulins are antibody proteins that are secreted by the white blood cells called B-lymphocytes and by plasma cells in response to the presence of a substance that provokes an immune response. This substance is called an antigen. Intravenous immunoglobulin G (IVIG) is a pooled human immunoglobulin G (IgG) that is presumed to modulate the immune system. It has proven useful in the treatment of a number of autoimmune diseases, but its role in the treatment of MS remains uncertain. Different trials of IVIG in different types of MS have produced variable results:There are some data that suggest that monthly IVIG may be beneficial in reducing relapses and/or inflammatory lesions on MRI in some persons with relapsing remitting MS. In other studies, IVIG was not shown to reverse deficits or slow progression in persons with progressive MS. A small pilot study has suggested that intravenous immunoglobulin (IVIG) administered for five consecutive days during the first week postpartum, and at six and twelve weeks thereafter, may help prevent postpartum relapses. Another small study in people who have experienced a clinically-isolated syndrome indicates that IVIG may delay the onset of clinically-definite MS by prolonging the time to a second attack. A recent meta-analysis of the various studies that have been done with IVIG concluded that it may be a valuable alternative for the treatment of relapsing-remitting MS (e.g., for those individuals who cannot or will not take one of the approved injectable medications), but cannot presently be considered a first-line treatment. Additional studies are needed to establish the role of IVIG in the management of MS, and to determine the ideal dosage level.

(from the crazy 80's style website)
What are the common side effects OF IVIG?

IVIg at times causes patients to get a headache, which is more common in females with a history of Migraines. after IVIg infusion some Patients may experience fatigue similar to getting a Flu, which is due to antibodies interaction. IVIg may also cause to patients get a rash and doctors recommended they take Benadryl or even steroids to avoid this. Remember their are a lot of antibodies and some may result in odd reactions. Kidney failure may result after IVIg if less fluids are given. Stroke or heart attack can happen after IVIg if the IVIg solution is pumped in at a fast rate.A severe headache with a stiff neck after IVIg may be due to aseptic meningitis.Variation in blood pressure, shortness of breath, back pain can also be seen after IVIg infusion. Serious conditions like encephalitis, myocarditis have been seen. (like I said you can find anything on the internet)


There you have it in a nutshell (or an IV bag whichever you prefer). I will have a lot of time on my hands this week as each treatment takes at least 4 hours. So check back I hope to update about the exploits of a Bald guy, some antibodies, and proof of Bigfoot.

4 comments:

pUNKrOCKfairy said...

Zoiks! You are brave. I have, on many occasions, avoided researching things on the internet to save myself the stress of sorting the facts from the bullshit.

I don't give a crap about Bigfoot; more a fan of the Loch Ness Monster. Lemme know if you turn up any proof on that.

Bald Ben said...

oddly enough as I was writing this it was a choice between Nessie and Bigfoot. Bigfoot was recently in the news so he won. Either way I'm always down for a mythical creature.

Heather said...

Just wanted to say good luck. Been thinking of you guys the past few days. Please let me know if you need anything. I probably can't do anything at this point, but I will call on one of my minions to do it for me.

Anne said...

I gave this a trial back in the 1980's for three months. I needed low dose prednisone daily for the itching and rash that developed.

At the time, I was totally wheelchair bound, unable to walk or even stand without falling over (balance was gone), and had a whole laundry list of MS symptoms that prompted the docs to offer this trial.

After three months, in addition to physical therapy and low dose prednisone, I was able to stand, feed myself (liquids and soft foods) and within six months, I was able to walk four to six feet within parallel bars.

So yes, it does work, but when the treatment was tapered down and then stopped, symptoms returned with me.

Good luck and prepare with medications to avoid side effects.

Anne