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.

Sunday, September 4, 2011

Been a Rough Month...

My neurologist has just been to a conference on CIDP, and the presenter gave a talk on the treatment group that I fall into. The new treatment option is to continue IVIG as before but to add 1 gram of Solumedrol at the 2-week interval inbetween the IVIG treatment.

This is both good news and bad news.

The good news is that he also increased the dose of the IVIG back to 0.9 mg/kg. I had been losing ground on that. I could feel the nerves 'crinkling' up in my wrists and my feet were total blocks of nothing. I knew I was losing ground and was really feeling depressed about the whole thing.

The bad news is that Solumedrol is hell on blood sugar - especially when you are an insulin dependent LADA diabetic, which I am.

My IVIG treatment at the end of July was horrid. I was sick before I went - the day was bad all day, and the recovery was worse - took me three days to really start feeling better. If that wasn't bad enough, I caught that cold/flu/whatever bug that is going around so I never really did feel totally good afterwards. Top that off with a previously scheduled trip to my favorite auntie's house and all the stress that entails plus she has no a/c and I was not expecting to be doing well in the blood sugar department anyhow.

BUT...a bit of good news in another area. I had started taking krill oil since it is supposed to reduce inflammation. Since my primary condition is a chronic inflammatory one - I thought what the heck! Anyway - I had only been taking it for about 3 weeks and my blood glucose (BG) was actually about 10% lower. WHOOEEE! In spite of being sick, under a lot of extra stress, not eating like I normally do, and suffering in the heat - all of which normally push it higher. Thanks to the krill oil!

So, I get home from the trip and there is the bottle of Solumedrol tablets waiting for me. I've had Solumedrol before - but always in an IV. My dear doc told me he thought it would be quite a few pills - maybe 15-20 and wondered if I could handle that many. I take more than that daily (vitamins) so no sweat - right? Well the dose was 62!

Next day I took them (they taste absolutely horrid!) and started the every 2 hours BG monitoring and pushing huge doses of insulin to keep my BG somewhere in the sort of manageable range. Over the course of the next 36 hours I used a monstrous amount of both R and NPH insulin. But never let my BG get over 350 and that's saying something because with this stuff it can get up to 800-900 if you aren't careful.

Now for more good news. The "crinkles" in my wrist are gone! Yay! and my feet are acting up. Which actually is a good thing.

Now for some more bad news. Back for another IVIG treatment - the hospitalist who takes care of me on the infusion ward is really unhappy with me being on the Solumedrol because my triglycerides are out the roof again. over 1400. My total cholestrol isn't too bad, 230. She says the triglycerides mean my diabetes is "totally out of control" and that is the fault of the Solumedrol. Well, hardly. It's only one day. So she wants to go argue with my neurologist about it. She also suggested that it would be better if I went into the hospital to have the treatment so THEY could do my insulin. Ha!

Even my nurse laughed at that one. This is a VA hospital we're talking about. This particular nurse used to be a floor nurse in the surgical ward, where I have also spent considerable time. She knows what a knock-down drag-out fight it has always been about my insulin. They don't even want to give my my regular doses. This is because they generally always are dealing with Type II diabetics on pills. Or if they are on insulin - they are also taking pills. And their version of a sliding scale insulin prescription involves giving the patient 2 units of insulin when their BG gets over 200. In my case, 200 means I need 100 units to get back down to 100. They absolutely freak out of their minds. I get lectures, and they refuse to give it to me. They have a fit when I ask for 20. So you can see what would happen if I was in the hospital on Solumedrol. I generally am pushing 200-300 units of R insulin and 100 units of NPH insulin every 2 hours. There is no way this would work over there.

Now the good news. My primary care doc (PCP) had the pharmacist from the clinic call me about my insulin and my very high insulin resistance. She and I had a long talk - and about the Solumedrol day. And he has already written a new prescription for my insulin that includes the extra vials of R insulin I need to cover the Solumedrol day. And it's already here in the frig waiting for me for the next dose. Yay! So my PCP and my neuro (I have two more doses of Solumedrol here) are prepared for me to go ahead with this treatment. So am I.

Then I found out that krill oil also helps with insulin resistance. Triple Yay!

I also read a research article on Dr. Mercola's excellent site . that says using black cumin also reduces insulin resistance a lot. I have some coming - and will report as soon as I have some experience with it.

It's a choice between a rough day with the insulin and BG, or a choice between my limbs becoming progressivly more numb, and slowly choking to death. Not much of a choice in my estimation.

So, between the good news and the bad news, on the whole, things have kind of balanced a little more on the good news side. My health is slightly improving even though I haven't felt all that good this month. I can see an upside. And that is always hopeful.

Saturday, July 16, 2011

End of the Road for IGg Therapy?

My last infusion over the Fourth holiday weekend was a nightmare. And my feet have been feeling like wooden blocks ever since. I am thinking I may have reached the end of the road with the IGg therapy. So what is next?

There's not much left out there for me. I've tried most everything - or what's left isn't available on my medical plan.

And I surely don't have the money for it if it isn't.

This is pretty stressful - looking at a much faster deterioration than I have been on and what that will mean for the rest of my presumably much shorter life.


Friday, June 17, 2011

The Week That Was

Last weekend was treatment weekend. Worse than usual. Waaaaay worse! I had been feeling kind of not good the week before so I knew it was going to be rough. But this was really bad.

All day at the infusion center - I felt wierd. By the time I was done, I was already running a fever and taking ibuprofen. I managed to make it all the way home without a nap (usually have to do that - it's a 2-hour drive and they give me a lot of benadryl!). More ibuprofen, hurting so bad in my joints and muscles I couldn't sleep. All day Saturday more of the same. Sunday it was 'down to' where it usually is on most 'normal' day afters.

It's a week later, and I'm still not feeling very good. Shaky and weak is the best way I can put it. I'm uncoordinated and dropping things. I want to sleep all the time. Usually after the weekend I feel really good. Not this time.

AAACK! What is going on? I hope this isn't going to continue...

Saturday, June 4, 2011

Getting Started

I decided to start this blog because I found there really wasn't a good outlet for me to express my frustration, to gripe about the bad days and to celebrate the good ones. I had subscribed to another blog a while back that I thought would be that place - and while I admire the woman who wrote it for all her various accomplishments - her blog turned out to be one of those where she only posted when she was getting paid to shill for some company selling a product or service to those of us in the chronic pain community. And that's okay - I just wish she had been up front about it.

In any case - here I am. CIDP - for those of you who've never heard of it - and most people, including most doctors, haven't - is an autoimmune disorder. It's fairly rare - only about 100,000 people in the US are diagnosed with it. (That's a whole other discussion!) My immune system is basically destroying the myelin sheath that protects the nerves. The removal of the myelin sheath first causes unbelievable pain - and then over time, the nerves die. Nerve pain is one of the most difficult to manage with pain medications - and I am also allergic or sensitive to many of those meds too.

CIDP is progressive, and treatments only work about 60% of the time - if you can get them and if you aren't allergic (I am to one of them) and if you have really really good insurance!

I have my good days and I have my bad days - and then there are the really bad days. Since I live alone for now - most people never see those days - and I try really hard not to whine about it so my family and friends probably don't realize the full extent of what I go through. I decided to do this blog because I wanted a place to vent - and to provide a place for others like me to do the same. Welcome to my world.

We can whine here, we can discuss treatments, and we can celebrate when those good days happen - or at least the less bad days.