jk
Your Replies
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May 28, 2016 at 6:42 pm
I found a copy of UHC’s position paper. As you say, they take a hard core position including:
“AND (d) Both of the following findings following lumbar puncture:
i. White blood cell count <10/mm 3
ii. Elevated CSF protein”I recommend you contact the Foundation for assistance with this battle. And, the answer is yes I did have negative spinal tap(s) as it it relates to i. and ii. above with coverage by insurance. However, my primary coverage was and is Medicare.
May 23, 2016 at 8:17 pmI did not know what Amoxicillan/lav is. I looked it up: “Amoxicillin and clavulanate combination is an antibiotic that belongs to the group of medicines known as penicillins and beta-lactamase inhibitors. It works by killing the bacteria and preventing their growth. However, this medicine will not work for colds, flu, or other virus infections.”
A search at Mayo Clinic finds there may be side effects as follows: “Incidence not known- Abdominal or stomach cramps or tenderness back, leg, or stomach pains”
The Cleveland Clinic in a 2010 Publication on Peripheral Neuropathy reports- well see it at:
http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/neurology/peripheral-neuropathy/
Go to Table 1. Neither amoxicillin nor clavulanate are listed as known to cause trouble.
I do not recollect any problems with antibiotics during my many years with CIDP. Although I also had IVIG monthly, it became necessary to have IVIG weekly, for what seemed like a long time. Your sluggishness may be CIDP related, not Rx related.
Be sure to report to your neurologist if these symptoms continue or worsen.
May 5, 2016 at 2:21 pmSuggest you re-post in Forums/CIDP because this forum is not viewed by most members.
Your doctor is best suited to tell you what damage you still have. Or, if you have a relapse or something new. Every case of CIDP seems to be unique and forms of CIDP will relapse. That is, get worse again.
May 4, 2016 at 8:23 pmC-Reactive Protein, according to the literature, is produced by the liver in response to inflammation in the body. However, CIDP is not one of the common triggers of inflammation. Some doctors might look at CRP following surgery to look for infections, or because it is an indicator of heart or blood vessel inflammation placing you at risk of heart disease or stroke.
hs-CRP level and heart disease risk:
Less than 1.0 mg/L Low risk; 1.0 to 3.0 mg/L Average risk; More than 3.0 mg/L High risk
A positive test means you have inflammation in the body. This may be due to a variety of conditions, including:
Cancer
Connective tissue disease
Heart attack
Infection
Inflammatory bowel disease (IBD)
Lupus
Pneumococcal pneumonia
Rheumatoid arthritis
Rheumatic fever
TuberculosisThis list is not all inclusive.
see: https://www.nlm.nih.gov/medlineplus/ency/article/003356.htm
http://www.webmd.com/a-to-z-guides/c-reactive-protein-crp?page=3
http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html
The general advice given online is to improve lifestyle with a heart healthy, anti-inflammatory diet and exercise.
May 2, 2016 at 7:52 pmYes, I took Alpha Lipoic Acid and many, many other things as well. Dr. Weil, a somewhat reputable medical professional says this “Take one B-100 B-complex vitamin daily. The B vitamins are necessary for normal nerve function, and supplementing is a good preventive measure. Do not take more than 200 mg of B-6, as higher daily doses can actually cause symptoms of neuropathy. Take 100 mg of alpha-lipoic acid daily. This antioxidant protects microcirculation to the nerves. You can gradually increase the dose to 300 mg twice a day over the next month.”
Dr. Weil makes other suggestions. here: http://www.drweil.com/drw/u/ART02717/Neuropathy.html
some physicians recommend Lyrica (pregabalin) Ask your doctor about being tested for your B-12 levels and if you should take additional supplements.
Sorry to read about your intense pain. I never did get that, only tingling and burning in my right hand.
April 30, 2016 at 7:14 pmBecause the Clinical Trial conducted by Dr. Burt in Chicago does not pay the participant(s) expenses.
April 26, 2016 at 11:59 amWell, you really searched back in the archives for these posts. Lots of good info in the past posts.
Ponder on this quote: “Patients with complete remission more often had subacute onset, symmetrical symptoms, good response to initial corticosteroid treatment, and nerve conduction abnormalities predominant in the distal nerve terminals.
In contrast, insidious onset, asymmetrical symptoms, and electrophysiological evidence of demyelination in the intermediate nerve segments were associated with refractoriness to treatment or treatment dependent relapse.”
It bears repeating- every case is different.
To learn more, consider doing a web search using ‘cidp in remission’
April 21, 2016 at 12:38 pmI am sorry to read about your mother’s condition. There are other treatment options available.
For example, “In intractable cases high-dose cyclophosphamide has been shown to be effective [Gladstone et al. 2007, 2005; Brannagan et al. 2002]. We prefer an initial pulse of three cycles at 350 mg/m2 body surface followed by 600 mg/m2 body surface at an interval of every 6–8 weeks..”
Here: http://jnnp.bmj.com/content/76/8/1115.full
For more treatment options please refer to this website: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105635/
If you did a search using each of the treatment methods above on this website’s search feature I am confident you will find someone who has talked about the method in the past.
A small measure of comfort in this data- “The 2007 GBS/CIDP Outcomes Survey indicated that over the last three decades the care of CIDP has improved the overall outcome. The mortality rate has decreased to 1.3 % and patients are less likely to be confined to a wheelchair (7 %). The proportion of patients who recovered or are independent while on treatment has increased remarkably to 31 %. Despite these improvements due to immunotherapy, the majority of cases remain to have some degree of disability with 28 % requiring an assistive device to ambulate (Koski L, 2007 CIDP Outcomes Survey, personal communication).”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3987657/
“Conclusions- The long term prognosis of CIDP patients was generally favourable, but 39% of patients still required immune treatments and 13% had severe disabilities. Mode of onset, distribution of symptoms, and electrophysiological characteristics may be prognostic factors for predicting a favourable outcome.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117396/
Here is another source of information: “When a patient does not respond to or cannot tolerate the first-line agents, other medications may prove beneficial. Azathioprine, cyclophosphamide, cyclosporine, interferon-alpha, interferon-beta, mycophenolate mofetil, and methotrexate have all been reported to be beneficial in CIDP patients not responsive to initial therapies.”
Pull up a chair to read this one- just as with your post ( a joke, please smile!)
April 15, 2016 at 6:19 pmThe NIH clearly says, “About 3 percent may suffer a relapse of muscle weakness and tingling sensations many years after the initial attack.”
Regarding the tingling you stated, “In January I began to notice a recurrence of the longest-lasting residuals:”
If something has ‘mostly disappeared’ and then there is a ‘noticeable recurrence’, by definition you have a relapse.
re·lapse (rē’laps),
Return of the manifestations of a disease after an interval of improvement.As you state, “If i can’t walk when I wake up….” You will have waited too long to seek helpful treatment.
Increased tingling could be in conjunction with muscle loss which is not yet apparent.April 12, 2016 at 9:45 amRegarding the reference booklet that Jim-la gave please continue to page 43 for the diagnostic criteria for CIDP.
And, I cast my vote with what GH said about sural nerve biopsies. They should only be done as a last and desperate attempt to make a diagnosis.
For example, from the Journal of Neurology and Neurosurgery & Psychiatry. 1998 Jan; 64(1): 84–89.
“RESULTS—The results of the first logistic analysis showed that CSF protein concentration >1 g/l (odds ratio (OR)=38.5) and neurophysiological studies consistent with demyelination (OR=51.7) were strong predictors of CIDP. When forcing the significant features and the sural nerve biopsy data into the model, an independent predictive value of sural nerve biopsy could not be found. The neurologist was able to discriminate patients with and without CIDP (area under the curve (AUC)=0.95). His diagnostic performance did not improve significantly by offering him the results of sural nerve biopsy.
CONCLUSION—Any additional diagnostic value of sural nerve biopsy in the diagnosis of CIDP could not be shown.”April 10, 2016 at 2:07 pmYou said, “Hi guys I had diagnosis of cidp from a neurologist…” What were the diagnostic criteria for the diagnosis?
and then, you said- “..who recommended I get started an IVIG pretty soon that was like over a month ago…”
If he suggested you start pretty soon, in what way did he offer to help you start? You had already seen him, therefore, you were already a patient.
At any rate, CSF protein levels alone neither rule in nor rule out a CIDP condition or one of it’s variants.
Specifically, an article in PubMed on Lewis Sumner Syndrome states- ” The CSF protein level was normal in 67% of patients and mildly elevated in the remainder.”
here: http://www.ncbi.nlm.nih.gov/pubmed/15289267
And this- ” Eighty-two percent of MADSAM neuropathy patients had elevated protein concentrations in the cerebrospinal fluid” Well, it means 18% of patients did not have elevated levels of protein.
In summary, you’re already unhappy with and second guessing your second neurologist. Don’t be a mind reader, wait for his diagnosis and treatment plan.
Or, go find somebody you will be happy with.
For what my history is worth, every single Doctor I saw repeated every single test. It’s part and parcel of the medical side of things. Further, it is required to rule in and to rule out all kinds of disseases for this condition.
April 6, 2016 at 1:43 pmA blood patch, in this case, is used to treat the patient’s ‘leaking’ lumbar puncture site by inserting some autologous blood back into the area of the original puncture and letting the blood clot thus stopping the leak.
http://www.webmd.com/pain-management/pain-management-spinal-headaches
April 5, 2016 at 9:56 pmI did apply for an appointment to Mayo Clinic Rochester, Minn some years ago. In response, I was told that although they would accept my case I was placed on a months long waiting list. When the scheduled appointment time arrived I was assigned to Dr. Tracy.
Unfortunately, she was called away for something or other and I was re-assigned to other doctors.
However, I expect your care would be in the best of hands no matter who you were assigned to. There are some doctors at Mayo Clinic Rochester that wrote the neurology textbooks that other doctors study in medical school. I can recall my Primary Physician stating, “I read his textbook in medical school” when referring to a doctor at Mayo.
Other doctors at Mayo Clinic have helped develop the EMG/NCV testing methods and interpreting protocols.
I note you may now call them about appointments or apply on line.
Good luck
April 3, 2016 at 2:39 pmhello and welcome. I recall having a severe headache for days after one of my spinal lumbar punctures. When I called the local ER I was told, ‘go back where they did the procedure.’ Of course, your results may vary.
I note a web search recommends conservative treatment first. Here’s one suggestion from Mayo Clinic- “Conservative management includes adequate hydration to try to increase CSF pressure. Sometimes this is accomplished by IV hydration or drinking things high in caffeine, such as Mountain Dew soft drink, to produce a vasoconstriction and try to increase CSF pressure in this way. Another treatment may be strict bed rest for 24-48 hours..”
So, get yourself to bed with a case of mountain Dew and drink up!
https://www.urmc.rochester.edu/imaging/patients/procedures/epidural-patch.aspx
The Univ of Wisconsin Dept of Radiology recommends “The initial treatment should consist of fluids and rest
prior to treating with a blood patch.”I treated conservatively for days and days. Afterwards I cursed myself for not going to get the blood patch. Too much needless suffering.
Some sites talk about a 90% success rate on the first patch going up to 95% with a second patch.
Good luck
April 1, 2016 at 11:01 pmI cannot recall anyone reporting long term improvement based on any form of diet.
However, I was surprised to find that Dr David Perlmutter who, according to his website is recognized internationally as a leader in the field of nutritional influences in neurological disorders gave a favorable review of the book you mentioned. He states, in part- “…this valuable book provides fundamentally important information for each and every one of us.”
Here: http://www.drperlmutter.com/review/wahls-protocol/
As it turns out Dr. Perlmutter came to my attention from Dr. Stephen Sinatra a top Integrative Cardiologist.
Dr. Sinatra provides a list of Doctors here:A truly Paleo Diet would seem to be difficult to follow.
Moreover, according to a report to Congress on Progress in Autoimmune Diseases Research by the National Institutes of Health by THE AUTOIMMUNE DISEASES COORDINATING COMMITTEE contains this- “Observations such as these illustrate the difficulty of separating relevant genetic factors from environmental influences such as diet, infectious agents, occupational and residential exposures, and lifestyle factors such as stress.”
See the entire report here:
http://www.niaid.nih.gov/topics/autoimmune/Documents/adccfinal.pdf
Best outcomes to you
