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?
Saturday, August 29, 2009
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.
"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!
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.
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.
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 !!
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 !!
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