I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). This site is for me, and others with this condition or chronic fatigue syndrome, fibromyalgia, and any other condition that involves chronic pain.

Thursday, May 10, 2012


Things are changing.  I still don't know from one month to the next if I am getting a whole dose of the IV IGg or not.  This month I got it on time but short.  Last month I had to wait an extra week.  There is a national shortage of this.  They are finding out that it is good for a lot of disorders so of course more people need it and they can't just whip up more.  People have to give plasma.  They are paying people to do that - but it still isn't enough.

I started taking another new supplement.  This one is called Vivix.  It's made by Shaklee and is supposed to be an anti-aging thing that helps with DNA repair and has a lot of resveratrol and polyphenols which are really potent antioxidants.  What I know is that I feel better, have a bit more energy, and I am feeling a lot of things in my hands and possibly my feet that I have not felt before.  Is it healing?  Don't know yet - I'm scheduled for EMG studies in June.  So we'll see.

Anyway, my infusion doc freaked out about my triglycerides and told my neurologist that I was going to die if I kept taking the Solumedrol so he stopped that.  I had another dose and a half so I continued it until I run out this month.  I am taking a calamarine oil supplement to get the triglycerides down and it was working - they were 1700 last time and only 900 this time - just needed another couple of months on the calamarine oil.  She just doesn't look at trends, only what is in front of her.  She should have freaked out when they were over 5000! 

She was freaking about my liver enzymes a few months ago - they were up a few points over the "normal".  I had been taking quite a bit of ibuprofen which is hard on your liver - pain kind of makes you want to take stuff to make it go away.  So I'm not taking so much now - the pain is less now.  And I took Liver DTX (another Shaklee product) for a couple of months and guess what - my liver enzymes are now back in the normal range.  So now she has nothing to say about that.

Same thing for my kidneys.  She is constantly pestering me to take a blood pressure medication because I am diabetic.  But I don't have high blood pressure.  I take BP Manager made by Enzymatic Therapy.  So my blood pressure runs around 122/68 or thereabouts.  Not bad for an overweight 62-year-old.  And every once in a while, my kidney number goes up a couple.  So I take a kidney detox.  It's been quite a while since I did that.  Can't remember the name of it - you only do it for a month and then quit.  But she freaks out about that when it happens and when I get it back to the normal then it's like it never happened.

Oh well.  Things are kind of looking okay for the time being.  My hands just feel like they are asleep.  They are stiff, and I have to really be careful - I have lost a lot of dexterity.  I remember when I was first diagnosed - Dr. Robertson said we couldn't do anything about my feet but we were going to try to save my hands.  At the time - I did not have any symptoms that I could feel, although the EMG results said there was already damage.  12 years later, and all the drugs and infusions and fighting with doctors and insurance later - and how much ground I have lost.  Mostly because of all the fighting and not being on a consistent treatment plan - and long stretches when I wasn't on any treatment at all, and then treatments that weren't consistent, or ones that didn't work.


Wednesday, February 29, 2012

In Pain - and How!

Been a while since I was on here. Things have been going along. I've been coping with a treatment every two weeks instead of once per month. Seems like I just get over one of them and it's time for the other one.

It's winter, and I'm depressed (SAD) so haven't been as good at managing my blood sugars either.

But today. Whew!

Started off this afternoon with what felt like a wierd charley horse in my right leg. But I couldn't work it out by stretching and massage. And it kept being there. And then I started getting the familiar old "ice picks" in my right foot too. As the day wore on, the pain got more severe - and the "stabs" got more severe.

I had visions of those DVT (deep vein thromboses). I sit a lot - sewing, editing ebooks, and other things I do to make money. My sister has had those in both her legs and she is far more active than I so I was very worried about this. It seemed like standing and walking made it slightly better. Or was that just my imagination? All I know is it just kept getting worse.

I took some ibuprofen. Yeah, I know, sounds like not much. But IB is an anti-inflammatory and that is my underlying condition. And it does help. But I also did a big boo-boo. I ran myself short of my other helper - topiramate. So I have been on a half-dose for the last three days - and today I didn't even get that. I had not been all that sure just how much it was working, well, now I guess I really know!

The ice picks are getting worse, and more often. I finally went to bed, after taking 4 mg of dilaudid. Managed to get an hour of sleep before they woke me up again. Took some more dilaudid and really relaxed and experienced the pain to see what was happening.

Turns out it seems to be the equivalent nerve in my leg/foot to the median nerve in the hand/wrist. So it's not a DVT! That's both good news and good news. I think!

The good news is no blood clots! The other good news (I think) is that this nerve has been 'dead' for a long time and my feet have had no sensation in them for years. Except for the ice picks. I am now feeling some sort of sensation in the three outer toes. Not much but something. Makes my foot feel like I am walking with a big lump of something under that side of my foot.

So....is there hope? I don't know yet. Only time will tell.

In the meantime, as I sit here yelping from the spasms of pain in this nerve, and doped up on dilaudid - I hope it is good news and that I am not going through all this for nothing.