Saturday, August 29, 2009

from HemOnc Today, clinical news from the oncology/hematology web site:

"The researchers confirmed a significant association in 14 of the 75 previously reported disease associations. Five of the 14 diseases were known to evolve from MGUS — multiple myeloma, amyloidosis, lymphoproliferative disorders, macroglobulinemia and other plasma cell proliferative disorders, according to the researchers. Important associations included hip and vertebral fractures, osteoporosis and hypercalcemia; these disorders were significantly increased with MGUS, even without multiple myeloma.

"Associations between MGUS and chronic inflammatory demyelinating neuropathy (RR=5.9; 95% CI, 1.2-28.4) and autonomic neuropathy were also confirmed."

-- monoclonal gammopathy of undetermined significance (MGUS) --

from the Mayo Clinic:

"A monoclonal gammopathy indicates the presence of abnormal levels of a protein in the blood. The protein is produced by a group of cells in the bone marrow called plasma cells. Plasma cells are normally found in the bone marrow and represent approximately 1 percent of all marrow cells. They produce the antibodies that help the body fight infection. Abnormal proteins circulating in the blood are not rare. Monoclonal gammopathy can occur in both sexes and in people of all backgrounds and occupations. In about 80 percent of cases, the abnormal protein does not cause any problems. However, over time, 20 percent of people will experience an increase in the amount of abnormal protein in their blood, which may develop into a more serious condition, including some forms of cancer."

So folks with CIDP are more likely to have this abnormal protein. And it is something that could possibly develop into some cancers. If people with breast, ovarian or lung cancers are more likely to develop CIDP, which comes first? The chicken? Or the egg? -- The cancer? The CIDP? The abnormal protein?

Thursday, August 27, 2009

CIDP ... Rocky's blog

There's a new clinical trial looking for subjects. If I lived in Oregon, I would surely sign up. It seems almost too good to be true -- or effective. Alpha Lipoic Acid. Ordinary and found in foods, but in a lower dose than what the Oregon Health and Science University is proposing. I will definitely try to follow this. It looks like they've been seeking subjects for several months already.

"Although corticosteroids, plasma exchange, and intravenous immunoglobulin (IVIg) reduce impairment caused by CIDP at least temporarily and can be used as a first-line treatments, they are not ideal for long-term treatment because of serious side effects and cost. Alpha lipoic acid (LA) is an antioxidant that also possesses anti-immune activity. It is effective in treating diabetic neuropathy. It is also promising in treating patients with multiple sclerosis.

"Subjects will be started on a single daily dose of 600 mg of alpha lipoic acid or placebo for the first 4 weeks and then increased to 1200 mg for the remainder of the study.

Saturday, August 22, 2009

CIDP ... Rocky's blog

Found out 89% of people like me can't handle heat well. 69% don't handle cold well.

So that likely has something to do with the drenching sweats I have off and on, though it's sensory and not necessarily to do with temps. I've heard from others who also have to deal with the drenching sweats.

This is all a bit confusing. But I'm going to forget about my neurologist wanting to do a sleep study!

Tuesday, August 18, 2009

CIDP ... Rocky's blog

Need to add a tidbit here ...

Somewhere along the line I saw an explanation of "the 3 sisters diseases" ...

MS, multiple sclerosis ... attacks the autonomic nervous system ... involuntary

CIDP, chronic inflammatory demyelinating polyneuropathy ... attacks the peripheral nervous system ... the things our brain asks our bodies to do.

ALS, amyotrophic lateral sclerosis ( Lou Gehrig's Disease ) ... attacks both autonomic and peripheral nervous systems.

If I'm going to have to have one of the nasties of the hundreds and hundreds of auto-immune diseases, I suppose I'm "lucky"? Though it is progressive and that's a scary thought.

Saturday, August 15, 2009

CIDP ... Rocky's blog

I know the CIDP is doing things to my head ... that is to say -- my emotional outlook.

I am, at the moment, taking care of my daughter's 4 animals while she's on vacation ... a vacation long overdue for her!

But my budget just isn't. It's been a year and a half since my car has been checked over. I need a car to get around as there is no one to take me. Doc appointments, etc. besides the usual grocery store and such. But it's all I can do to keep up the car insurance and emissions checks and yearly sticker.

I spend very little. Resale shops for my personal needs.

Medical budget is stretched to the limit. I buy supplemental insurance to go along with my Medicare because that allows me to choose my own docs and allows me to see them when I want/need to. I can also see the specialist neurologist in Houston, which I couldn't if I was in one of the HMO/PPO plans. So ... along with 3 insurances and meds for me, there are twice yearly visits by a Mobile Vet for my 23-yr-old Siamese who has stable kidney disease and GI problems and high blood pressure. She, too, as you might imagine, has meds to take.

And now has come another blow.

Wednesday, August 12, 2009

CIDP ... Rocky's blog

Just gave in and ordered a medic-alert bracelet. Figured no one would immediately know what CIDP meant, so I spelled it all out ... which took most all the available space for info. Which is okay, other than being allergic to bee ( that entire family of nasties ) stings, there's nothing of great import. Actually, I'm probably going to feel relieved -- reassured wearing it ... maybe?

Monday, August 10, 2009

CIDP ... Rocky's blog

Phooey! As usual on Monday, I go over to "play in the dirt" at my daughter's house. I walked on something that made my foot go into a watering well around a large live oak tree. Fell onto the concrete patio. Not too bad. Will have black and blue knee and black and blue right palm, but -- all in all -- not bad. Not an easy time getting back up.

Then I went to water in the front yard and put my foot over the 8-inch high border "fencing" ... to get to the wall faucet, y'see. But somehow my foot wasn't far enough inside the fencing and I ripped up the back of my ankle area.

My feet obviously aren't moving as I had assumed they were still moving. Bummer!

Before I left home, the neuro's office called. She'd still like a sleep study since I'd complained of fatigue and drenching head sweats at night ( and day, really ). Well, from everything I've read, fatigue is the usual, the norm. And I've also read of others having the drenching head sweats. Besides, I told the office nurse, since I've been on gabapentin in the b.i.d. ( and now t.i.d. ) dose, I've not had any head sweats ( oh my -- knock on wood !!! ). So I declined the test. Don't suppose that makes the neuro too happy and the nurse did tell me it would be in my record that I "refused". Can't win, can I?

As I said ... Phooey !!

Sunday, August 9, 2009

CIDP ... Rocky's blog

Heard from an internet pal in England. She has been diagnosed with fibromyalgia, but when she read my blog, she saw her symptoms ... all of 'em. Hopefully this will lead to a more definitive dx for her ... ?

I also need to add that the electric shocks in my left hand, thumb, are described by another CIDP person as if we were grabbing onto an electrified fence and not letting go. Perfect description! Heard from someone else ... like meeting up with a cattle prod. : ) Very descriptive folks!!

Saturday, August 8, 2009

CIDP ... Rocky's blog

I was reminded today of the problem with legs. Yes, they do indeed feel as if they are two pillars encased in concrete.

Friday, August 7, 2009

CIDP ... Rocky's blog

Neuro called. I've been troubled with fatigue and also with sudden onset drenching sweats, day or night. She's considering a sleep study, which is something she's mentioned several times.

Hmmm?? I know that fatigue is something that is part and parcel of CIDP. Could the sweats be as a result of the cancer? ... specifically breast cancer? Hormones playing a part? I need to research.

At any rate, when I start to consider, I don't think I've had those drenching sweats since I started on the gabapentin. Well, that's sure something new to research!

Thursday, August 6, 2009

CIDP ... Rocky's blog

This is August 6, 2009. I have started this blog to keep track of what's happening to me as far as this CIDP goes, but also to hopefully hear from others who have dealt with or are in the midst of trying to deal with their own CIDP and its problems.

I find the Neuropathy Association only slightly helpful in that there really isn't much regarding CIDP as one of the peripheral neuropathies. It gives a hopeful viewpoint and that's good, not always real-life, but hopeful.

As I started down this path, I did research, extensive really. I found several published papers, among them from the NIH and Mayo, that linked CIDP to breast, ovarian, lung cancers.

I'm guessing that folks like me must've had very well-developed immune systems for them to go "bananas" and start attacking elsewhere in our bodies. I always thought it great that I seemed to have a more than adequate immune system as far as not "catching" things.

Well, so much for that theory! : )

CIDP ... Rocky's blog

July 23, 2009, a Thursday. Better night last night, but severely fatigued today.

July 28, 2009, a Tuesday. My neuro here says to start with 300 mg. gabapentin b.i.d. for 10 days, then 300 mg. gabapentin t.i.d.

July 31, 2009, a Friday. I feel pretty gung-ho today. It's nice to have a plain old regular day! Got plants/shrubs watered and fed. Charged up and aired up my 3-wheel scooter. Did housecleaning. Wow!

August 6, 2009. a Thursday. Well, I did pay for that surge of energy. Always happens that way. The fatigue is pretty overwhelming when it happens.

CIDP ... Rocky's blog

July 2009. An e-mail to my family:

I'd mentioned the pinpricks in my toes, but things have progressed. As long as I keep feet/legs elevated in the evenings, the pinpricks have lessened.

Now I also have electrical charges, severe but short, in my left hand. No rhyme or reason. It just happens.

Have the same old-same-old "exercise burn" in my thighs ... that never goes away.

But now there comes a constant pain in my left hand ... rather like a nasty never-ending toothache. That, too, comes and goes, but lasts several hours at a time.

All this is leading up to last night. "Toothache" type constant pain in my right foot ... and in my left hand. "Exercise burn" in both thighs. A bit of the RLS (restless leg syndrome) as well.

CIDP, Rocky's Blog

April 2007. Dx of breast cancer
May 2007. Biopsy
June 2007 2nd biopsy
July 2007 Mastectomy x 2

Almost immediately felt what seemed an over-exercise "burn" in thighs.

November 2007. Saw neurologist.

December 2007. 6 weeks physical therapy. Fun, but didn't help matters.

January 2008. Back to neurologist. Referral to her "guru" at Neuro Institute in Houston.

October 2008. 3 days with the neuro "guru". Blood work. Physical exams. EMG. Lumbar puncture. No definitive dx, but could be IBM, Inclusion Body Myopathy. Come back in 6 months.

December 2008. Saw neuro here.

April 2009. Back to neuro guru. More blood work. More neuro physical. More extensive EMG procedures this time. It isn't IBM, it's CIDP. Come back in a year, but sooner for IVIg if pain is too ugly.

June 2009. Back to neuro here. Start neurontin/gabapentin, 300 mg. once a day.