jk
Your Replies
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March 14, 2015 at 9:37 pm
When you say “despite my autoimmune problems (type 1 DM, )” What is DM an acronym for? Type 1 Diabetes Mellitus, maybe?
In that case, there is a chance that you may have diabetic related peripheral neuropathies having nothing to do with CIDP. Neuropathies for which IVIG is not known to help.
The NDIC, National Diabetes Information Clearinghouse has a good discussion on
- Diabetic Neuropathies: The Nerve Damage of Diabetes
March 11, 2015 at 7:43 pmWell, if you left the Hospital and Mayo Clinic back in 2006 and only now have intolerable pain, perhaps there is a different cause of the pain.
Generally speaking, CIDP does not respond in such a short time (two months). Again, every person and every case is different.
March 11, 2015 at 1:54 pmAgree with and Add to what GH said- Why were your treatments discontinued?
March 10, 2015 at 1:29 pmDiagnosing CIDP has a specific set of criteria including personal history, clinical exam and laboratory testing. Some results rule in CIPD. Some results rule out CIDP. Examples of lab tests include electromyography (EMG) with nerve conduction (NCV) studies, blood tests and analysis of spinal fluid.
Most CIDP is noted for a lack of deep tendon reflexes.
You indicate a 4 year history of problems. For discussion purposes all the following may have symptoms similar to CIDP-
other known causes of neuropathy, including inherited neuropathies, multifocal motor neuropathy (with or without conduction block), paraneoplastic disorders, lymphoma, osteosclerotic or multiple myeloma, POEMS syndrome (plasma cell dyscrasia with polyneuropathy, organomegaly, endocrinopathy, M protein, and skin changes), Castleman syndrome, HIV, major immune diseases of kidney or bowel, necrotizing vasculitis, a known or suspected metabolic deficiency or toxic condition that might cause neuropathy, Lyme disease, immune sensory and autonomic neuropathies, presence of hepatitis C, or cryoglobulins. Because some neurologists consider patients with monoclonal gammopathy of undetermined significance (MGUS)–associated peripheral neuropathy distinct from CIDP.
And of course, Lou Gehrigs disease, or ALS. None of this is intended for any purpose except to encourage you to seek a definitive diagnosis. Or two.
February 7, 2015 at 10:50 pmI am unable to recall anyone on this forum reporting this type of exposure causing their CIDP? Further, wouldn’t you agree that the primary effect of Radio Frequency radiation is heating of body cells, all the cells?
Given the high number of people likely exposed to RF radiation or x-ray radiation or nuclear ionizing radiation it is unlikely that any of these are a direct cause of CIDP.
Rather, what other types of exposure are there in common? A PubMedHealth article includes this:
The cause of chronic inflammatory polyneuropathy is an abnormal immune response. The specific triggers vary. In many cases, the cause cannot be identified.
It may occur with other conditions, such as:
Autoimmune disorders
Chronic hepatitis
Diabetes
HIV
Inflammatory bowel disease
Systemic lupus erythematosus
Lymphoma
Paraneoplastic syndrome
Thyrotoxicosis
Side effects of medicines to treat cancer or HIVIt seems unlikely that the heating effects of RF radiation would affect your immune system in a way to alter it and not damage other cells as well. Yet, who knows?
February 7, 2015 at 10:39 pmCould it be the Rituxan has helped my CIDP in addition to my anemia?
Rituxin has been reported to improve CIDP in patients who do not respond to standard treatments, usually IVIG or Plasmapheresis (PE). In other words, since a good percentage of CIDP patients do respond, there is a limited supply of candidates to try Rituxin. And, no doubt, an even smaller subset of doctors willing to use Rituxin. Further the issue is clouded when the Rituxin studies include CIDP patients with IgM monoclonal gammopathy and no anti-MAG reactivity.
In the past, others on this site have reported using rituxin. Lori222 and Norb come to mind.
For example, there is this from Norb filed away in the forum history circa 2007: “Yesterday I had my first Rituxan treatment with the new Medicare approved diagnosis of “B-cell lymphoma” which appears to be the underlying cause of my CIDP with antiMAG IgM. Everything went well, 3 more weekly treatments to come.”
Consider looking at this website:
http://cancertreatmenttoday.org/rituxan-in-chronic-demyelinating-polyneuropathy-cdip-pro/
Finally, it is my understanding that Rituxin is one of the drugs used in the Stem Cell Transplant (SCT) clinical trial up at Chicago’s Northwestern University. Cytoxin is the other.
December 31, 2014 at 1:40 amAccording to the American Society of Rheumatology-
“It is not clear why hydroxychloroquine (Plaquenil) is effective at treating autoimmune diseases. It is believed that hydroxychloroquine interferes with communication of cells in the immune system.”
If it is not clear to the experts, I doubt us laypersons will figure out what this medicine does to the Immune System.
November 3, 2014 at 10:11 pmHello and Welcome,
The GBS_CIDP website has lots of good information within it’s different sections. Make sure to explore it all.
Some patients will respond to IVIG when they have CIDP, some will not. A few doctors have said the positive response to IVIG is presumptive proof that the CIDP diagnosis is accurate. Clinical Trials (and practical experience) have demonstrated that different patients need different amounts of IVIG given at different intervals.
In other words, every patient, and every condition, are different.
I had a course of IVIG with demonstrated positive results that the doctors (neurologists) discounted as ‘arbitrary.’ They then discontinued the IVIG.
Other patients on this website have reported benefiting from corticosteriods such as prednisone or a specialized treatment called Plasmapheresis (PE) sometimes in conjunction with an immunosuppressant such as Imuran- azathioprine.
You would probably do yourself a favor to find a neuromuscular CIDP specialist. This website includes a list of “Centers of Excellence” should you live nearby one, go there.
Be proactive, be happy. The downward spiral is hard to break. The Foundation offers contact people with peer support groups and functions you can attend.
October 31, 2014 at 1:35 pmYour disease progression seems very rapid. Yet, some IVIG seemed to help. Consider attempting to get more IVIG more often.
You stated “… because at this point I know almost nothing, as do the medical professionals involved in my case. Thanks~.”
My advice is to find Medical Professionals who know more than almost nothing. On the main GBS-CIDP page click on CIDP, then use the drop down menu to select and read all the available information there. At a minimum you could look for a neuromuscular CIDP Specialist.
Do not be complacent, take charge, do not sit idly by. It is likely your condition is not sitting idly by.
October 22, 2014 at 12:48 pmBoth Western meds and TCMs are known to have side effects. Good grief, what doesn’t? This morning I received my Mayo Clinic Health letter. In it was an article about Cholesterol-lowering supplements. Not your subject, directly, I know.
First, the link to the letter: http://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/cholesterol-lowering-supplements/art-20113591/?utm_source=newsletter&utm_medium=email&utm_campaign=heart-healthy&pg=2
Second, to my point, taken from the letter: “Red yeast Red yeast is fermented rice that’s cultivated using a species of red mold. The Chinese have used it for centuries for medicinal purposes, as well as to flavor, color and preserve foods and beverages.
Benefits: Some products containing red yeast rice have monacolin K, which is the same cholesterol-lowering ingredient (emphasis is mine, the same ingredient!) found in the drug lovastatin (Mevacor, Altoprev).
Possible side effects: There is no way of knowing how much monacolin K is present in products containing red yeast rice. Some products also contain citrinin, a toxin that has been linked to kidney failure. Side effects of lovastatin, such as muscle pain and liver toxicity, may also apply to red yeast rice.”In fact, for a few years the import of red rice yeast was prohibited. “Court Reverses FDA Decision to Ban Import of Red Yeast Rice Product CholestinT June 17, 1998: Boulder, CO”
The problem is, that without USP (USP Verified dietary supplements are products that have been voluntarily submitted to the USP Dietary Supplement Verification Program and have successfully met the program’s stringent testing and auditing criteria) you will never really know, you can only accept on faith, that the providers of your “meds” are reliable and that’s a big risk. One example from recent Chinese history- Melatonin added to Milk, yes even baby formula, to raise the apparent protein levels.
Of course, some Chinese supplements are well known and Government controlled, same as in this country. And the anti-cancer properties of certain mushrooms seem to be well accepted in the US and in Japan. I just read an NIH study yesterday regarding the Coriolus mushroom.
October 20, 2014 at 8:37 pmIf you are willing to concede that GBS and CIDP are conditions which are closely enough related for the answer to be relevant, then here is the answer.
Yes, I went to China (back in 2000-2009, so maybe things have changed) where I sought treatment and opinions. Yes, I was studied and poked and prodded at more than one major Chinese (Western) University Teaching Hospital and at one or two, or more, TCM Hospitals. Result? “Yes, we know of cases such as yours. Deadly? No. Progressive? Usually. Treatment? none! Well, you might try IVIG.”
Not a single one of these doctors in China offered acupuncture or herbals or any kind of treatment other than “Try IVIG.”
As for B-Vitamins- It might be considered well known that B-Vitamins are sometimes considered for nerve trouble. For example, From WebMD: “Nutritional deficiencies. Deficiencies of certain nutrients, including vitamins B6 and B12, may produce symptoms of nerve pain and nerve damage, including weakness or burning sensations. Nutritional deficiencies that cause nerve damage may also result from excessive alcohol ingestion or develop after gastric surgery.”
I am not aware of any reliable source stating supplementation with B-vitamins for the damage caused by either GBS or CIDP was successful. However, my family doctor once said- “Try a B-complex.”
If your neurologist has stated that you have axonal damage, you may no longer be in the GBS acute phase of disease. You may have moved on to the more chronic CIDP phase. Axonal damage should sound loud, alarm sirens for a fast, effective treatment. Not the months or years provided by a herbal solution. Muscle wasted due to axonal damage is probablyy muscle lost which will likely never recover.
Let “us” know how your TCM, including acupuncture, work out.
October 20, 2014 at 8:07 pmArmando, Sorry to hear about all your troubles. I am familiar with a case in California involving a work comp injury
and Liberty Mutual.find an Attorney who is a Certified Worker’s Compensation Specialist. Do it immediately.
September 30, 2014 at 12:12 pmYou may receive more replies if you post directly to the CIDP Forum, not the main forum.
It is true that chronic (long, long time) nerve damage, attributable to Chronic CIDP, leads to irreversible muscle atrophy and wasting. At least it has been, and continues to be, true in my case.
Not only that, but there is a good likelihood that my treatment with Imuran, generic azathioprine, immune suppressant has permanently damaged my immune system. Specifically white blood cell and platelet production.
My opinion is that all CIDP patients would benefit from finding a fully qualified neuromuscular CIDP specialist when it comes to diagnosis and treatment.
Others, of course, have varying opinions.
contact the GBS_-CIDP foundation for help. http://www.gbs-cidp.org/home/about/contact-us/
September 30, 2014 at 11:53 amI sent an e-mail several days, or weeks ago, to the Foundation asking for a referral to the entire article.
there has been no reply.
September 7, 2014 at 1:30 pmYes, I have heard of it.
“..it was explained to us…” and how much credibility do these explainers have?
Personally, I might consider myself IVIG dependent, if and only if, I have tried and failed (and have been given them by a neuromuscular CIDP specialist) all of these:
Pub Med Central Theraputic Advances in Neurological Disorders by Kenneth C. Gorson corresponding author
Department of Neurology, St. Elizabeth’s Medical Center, 736 Cambridge Street, Boston, MA 02135, USA
Nov 2012; 5(6): 359–373.Table 5.
Therapy for chronic inflammatory demyelinating polyneuropathy.
Proven therapies from randomized controlled trials: Level I evidence [Ashman and Gronseth, 2012]
IVIg
Prednisone
Plasma exchange
Pulse oral dexamethasoneTherapies ineffective based upon randomized controlled trials: Level I evidence; These studies all had difficulties in trial design:
Azathioprine
Interferon B1a (Level II evidence)
MethotrexateTherapies of unproven benefit but probably helpful as steroid sparing agents, based upon clinical experience, and > 1 case series: Level IV evidence
Cyclosporine A
Cyclophosphamide
AzathioprineOther therapies of unproven benefit: Level IV evidence
Mycophenolate mofetil
Pulse weekly oral prednisolone
Pulse weekly oral dexamethasone
Pulse weekly intravenous methylprednisolone
Rituximab
Interferon alpha 2a
Etanercept
Tacrolimus
Alemtuzumab
Natalizumab
Hematopoietic stem cell transplantation end quote.Finally, I suggest that your conclusion “… And if that’s the case then stem cell transplant won’t work.” is neither factually based nor a correct conclusion based solely on the presumption of being “ivig dependent.”
