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Your Replies
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March 7, 2017 at 7:29 pm
And, according to your OT, what is it you already know? Is finger dexterity, gripping grasping and fine motor control improving, stable or getting worse?
Ditto question for the neurologist. There are multiple ‘clinical’, as in-the-office, tests that could be performed. Are those results improved, stable or declining?
Further, does ‘let your condition continue it’s clinical course’ include on-going treatment of any kind other than OT?
Running any more EMG/NCV test will not answer those questions.
Without proper, effective treatment others on this web site have continued their clinical course straight into a wheel chair. My clinical course ultimately left me unable to hold a pencil or to walk without assitive aids.
Ask your doctor about these questions.
January 18, 2017 at 7:25 pmI did what GH said and that was to get off, and stay off of pain meds, particularly the narcotics based and all the mood altering psychotropics, specifically gababentin, effexor, elavil, neurontin, paxil, wellbutrin and others of that ilk. Over the years the doctors offered me all of those.
No doubt others could share their positive experiences with these for nerve pain management. It’s personal with me. I don’t like the side effects.
I also took an immune suppressant. I stopped taking it almost 6 years ago. Here again, it’s only my opinion, that the immune suppressant has so far permanently suppressed my immune system.
January 18, 2017 at 7:05 pmExplain your side effects and ask at your infusion center about slowing the rates. Your doctor has probably only prescribed the total dose, not the actual infusion rates. However, the Infusion Center should have the freedom to adjust the rates as needed.
Generally, for each brand and type of IVIG the manufacturer’s package insert discusses rates and when and how much to increase the rate.
For example from the Gammagard Prescribing Information sheet for Intravenous Administration for treatment of PI (primary immune defeciency)- 300 to 600 mg/kg every 3 to 4 weeks based on clinical response
0.5 mL/kg/hr (0.8 mg/kg/min) for 30 minutes
Increase every 30 minutes (if tolerated) up to 5 mL/kg/hr (8 mg/kg/min)
Note that the Caution “IF TOLERATED” is standard prescribing language.
See in the post above about an infusion taking 7 hours.
Usually Insurance obstacles can be overcome. If not, this website has a section on Denied treatments
the link: https://www.gbs-cidp.org/support/denied-ivig-treatments/
January 17, 2017 at 5:30 pmWelcome back to the forum. You mention – ‘CIDP, recurring but slow progression, since 2001.’ Is the condition still progressing now? and, with that much IVIG? Might be time to try something else.
I am unaware of any diet that is particularly helpful. I also took alpha lipoic acid, ALA, and fish oil. My anecdotal (reports or observations of usually unscientific observers) observation is that the combination of all the things I was doing at that time helped alleviate the sensory symptoms I was having . No, I was not on IVIG then.
January 17, 2017 at 5:09 pmIn a PubMed article I found this: “RESULTS:
We identified 9892 infusions given to 174 patients. Headaches were the most common adverse effects; they were observed during 886 (8.9%) infusions and involved 123 (70.6%) patients. The incidence of other minor adverse effects, including fatigue, nausea, vomiting, chills, urticaria, swollen glands, hoarseness, thoracic discomfort, and palpitations, was 0.57-3.4% per infusion and 0.04-1.3% per patient. Hoarseness of voice and swelling of cervical lymph nodes have not been previously reported. Acute renal failure occurred in one patient and was the only major adverse effect observed. None of the patients required hospitalization, and there were no deaths.”
I agree with slowing the infusion rate. You might also consider asking the doctor about taking a NSAID (pain pill). Also, consider pre-loading liquids by drinking extra water the day before and the day of infusion.
January 17, 2017 at 4:55 pmNot only is CIDP often difficult to diagnose correctly, Dr. Lewis (considered by many to be an expert) lists 23 differential diagnoses in article he just updated May 6, 2016. He also lists some specific Clinical Presentations. Clinical Presentation means what does the Dr. see when you are in front of him.
Look on this website under support, read what’s there and see if you are able to be seen at a Center of Excellence.
Also from that article by Dr. Lewis: “Untreated, chronic inflammatory demyelinating polyradiculoneuropathy is characterized by accumulating disability that requires physical and occupational therapy, orthotic devices, and long-term treatment. Close follow-up care with a physician knowledgeable in the field is necessary to adjust treatment.”
And then there’s this, in an December 22, 2014 article by Jeffrey A. Allen, MD and Richard A. Lewis, MD.
Disclaimer, Dr. Allen is my neurologist.
“Conclusions: CIDP misdiagnosis is common. Over-reliance on subjective patient-reported perception of treatment benefit, liberal electrophysiologic interpretation of demyelination, and placing an overstated importance on mild or moderate cytoalbuminologic dissociation are common diagnostic errors. Utilization of clear and objective indicators of treatment efficacy might improve our ability to make informed treatment decisions.”
the articles are here:
http://emedicine.medscape.com/article/1172965-overview
http://emedicine.medscape.com/article/1172965-overview
Note that some patients have a non-typical variant of CIDP, making their condition even more difficult to diagnose. Please do not continue to accept what I call idiots’ diagnosis (idiopathic anything).
January 13, 2017 at 7:53 pmWhat JIM-LA said. In addition, unless your insurance requires a referral, try to find your own neurologist. The Centers of Excellence listed on this website are a good place to start.
https://www.gbs-cidp.org/support/centers-of-excellence-2/
Contact the Foundation to find local support.
I do see some of your symptoms listed as side effects, major or rare, of Bactrim.
Keep a journal of your symptoms, how they change and questions you have. Carry it with you. This way you won’t overlook something next time you see a doctor.
Good luck and Happy New Year.
December 3, 2016 at 1:56 pmIn a different thread I raised the subject of immune suppression. Something to think about in relation to ‘flu’ shots.
I reported in this thread that I just had the 13 layer Flu shot. In the other thread I raised the issue of poor immune response following immune suppression.
My immunologist, and therefore, myself, have received the test results of the blood labs to check for the effectiveness of my immune system to the flu vaccine shot. The answer is that I failed to produce sufficient antibodies to this flu shot.
What does it mean? In my case, I took the chance of an adverse vaccine reaction for nothing. Literally. I did not produce enough antibodies to be considered to have the proper response to a flu shot. If the flu, in any of the forms in the shot comes around, I will not have the average person’s immunity to those forms.
November 27, 2016 at 9:37 amIt took me a few more minutes to recall this tidbit: Steroids can make Multi Focal Motor Neuropathy (MMN) worse.
“In a proportion of patients with MMN, steroids worsened weakness, sometimes dramatically.4,71 Surprisingly, plasma exchange is also ineffective in MMN and may result in clinical and electrophysiological worsening.72 This puzzling finding underscores the unique pathophysiology of MMN as an entity distinct from motor predominant GBS, or other variants of inflammatory neuropathy, and remains one of the interesting aspects of MMN yet to be elucidated.”
Here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3983019/
And, for another good discussion on CIDP from this website, go to:
https://www.gbs-cidp.org/wp-content/uploads/2012/01/CIDP.pdf
Consult closely with your doctors, including seeking 2nd or 3rd opinions, to make sure you have an accurate diagnosis.
November 27, 2016 at 9:20 amI never took long term steroids. I did have one set of 5 day tapered oral dose with no noticeable side effects.
An online review shows muscle weakness as a side effect. However it is difficult to correlate dosage and time to onset or degree of weakness.
Solu-Medrol
Generic name: Methylprednisolone
Other trade names: Duralone®, Medralone®, Medrol®, M-Prednisol®
Other names: 6-Methylprednisolone, Methylprednisolone Acetate, Methylprednisolone Sodium SuccinateThe following side effects are common (occurring in greater than 30%) for patients taking Solu-Medrol:
Increased appetite
Irritability
Difficulty sleeping (insomnia)
Swelling in your ankles and feet (fluid retention)
Nausea, take with food
Heartburn
Muscle weakness
Impaired wound healing
Increased blood sugar levels.The above data is from: http://chemocare.com/chemotherapy/drug-info/solu-medrol.aspx
Generally speaking, there are certain criteria to diagnose CIDP. Dr. Lewis, a specialist, has an article in Medscape. These criteria also include ruling out other diseases. Dr. Lewis lists 27 of them under differential diagnoses.
Here: http://emedicine.medscape.com/article/1172965-overview#a1
This is a long article. If you get a pop-up asking for sign in, then create an account. It’s free. Or, used to be.
Good luck with your condition and if IVIG helps then, in the words of a Mayo Clinic Doctor, “you have your diagnosis.”
November 23, 2016 at 9:30 amMy solution was to travel, as needed, (about once a year) to where my doctor of choice was and then, find a local doctor willing to administer the treatments recommended by the specialist.
So, my RX treatment tree spread like this- Neuromuscular Specialist out of state, local (in state) neurologist of no particular specialty, and finally, my local hematologist at the infusion center near my home.
November 23, 2016 at 9:19 amIf ever there were a ‘this is up to you personal decision’ after consultation with your doctor, this is one of them. I have asked this question of several doctors. Here is an online opinion regarding Flu vaccine from Pub Med in 2012:
CONCLUSIONS:
The incidence of post-influenza vaccine GBS is similar to the incidence of idiopathic GBS in the general population. Although the nonnormal distribution of post-vaccination GBS suggests that some cases may be triggered by vaccination, the greater risk of complications from influenza virus infections makes vaccination the first-line strategy for infection prevention and support the current guidelines on vaccination.
By the way, several studies of the Data from the Vaccine Adverse Event Reporting System supports this conclusion. The website is here: https://vaers.hhs.gov/index
The general reply from the doctors I have questioned goes along these lines- “That’s a good question with no easy answer. Generally speaking the risk of complications (including death) from the disease is greater than the risk of another adverse reaction to the vaccine.”
I have already agreed with Jim-LA. This a personal decision. No amount of vote taking here makes that any easier.
In answer to your question- Yes, I have recently had the Pneumococcal vaccination
• Prevnar 13 (PF) 0.5 mL intramuscular syringe. And, I have had the flu shot every year for the last 3 years.November 2, 2016 at 7:31 pmYou may have already been to see your doctor before you sign in here again. A surprising percentage of CIDP patients do not respond to IVIG. For those who do not respond, there are other treatments available. Ask your doctor about them.
Textbook EMGs might only be a part of the ‘classic’ diagnosis. For example, according to Dr. Lewis, patients may also have:
“Pertinent physical findings are limited to the nervous system, except when the condition is associated with other diseases. Such findings may include the following.
Signs of cranial nerve (CN) involvement (eg, facial muscle paralysis or diplopia)
Gait abnormalities
Motor deficits (eg, symmetric weakness of both proximal and distal muscles in upper and lower extremities)
Diminished or absent deep tendon reflexes
Sensory deficits (typically in stocking-glove distribution)
Impaired coordination”Your post mentions things you have read. There is a comprehensive and complicated article in Medscape by Dr. Lewis. The link is here:
http://emedicine.medscape.com/article/1172965-overview
There is another article in the Journal of Neurology…. “Clinical diagnosis
The diagnosis of CIDP relies on a combination of clinical and electrophysiological criteria. A number of criteria have been proposed. The European Federation of Neurological Societies (EFNS)/Peripheral Nerve Society (PNS) guidelines were developed for clinical and research use.7 The criteria combine clinical features and electrophysiological evidence to define CIDP, with supportive criteria including elevated cerebrospinal fluid (CSF) protein, gadolinium enhancement of nerve roots or plexus on MRI or nerve biopsy findings providing supplemental diagnostic evidence. Electrodiagnostic evidence of peripheral nerve demyelination in motor nerves is required for diagnosis, including distal latency prolongation, reduction of motor conduction velocity, prolongation of F-wave latency and partial motor conduction block and must be identified in at least two nerves for a diagnosis of ‘definite’ CIDP”
Here: http://jnnp.bmj.com/content/early/2015/02/12/jnnp-2014-309697.full
In other words, the clinical presentation combined with the appropriate lab work is an important part of the diagnosis.
From a different source: “The most important laboratory studies that support of the diagnosis of CIDP are the cerebrospinal fluid (CSF) examination, NCS, and nerve biopsy. Of these three, the CSF evaluation is the most sensitive as protein is elevated in up to 94 % of cases with normal white cells”
Nerve biopsy is not considered so important these days. As stated, elevated CSF and abnormal nerve conduction studies narrow down the diagnosis. However, not all patients initially have elevated CSF, some have reported their CSF elevated later on.
In my case, the CSF has never been elevated.
Continued, two way conversations with your doctor should lead you in the right direction.
October 29, 2016 at 8:16 pmThis website has a list of Centers of Excellence under the “Get Support” tab.
For example, and somewhat near you is: USF
http://www.health.usf.edu/medicine/neurology/faculty
Phone Information- Department Of Neurology – 813-974-3541
Go there if you are able. There are lots of causes of peripheral neuropathy. Finding a good doctor is important.
Pain relief is by trial and error. Please use caution with Narcotic pain relief. When you see your doctor ask if alpha-lipoic acid might help.
October 19, 2016 at 8:45 pmYou may not see immediate improvement. Specifically, the National Institutes of Health said in 2012: “IVIg has been introduced as the main therapy for CIDP over the last two decades. Multiple well-controlled studies have demonstrated that approximately 50–70% of patients respond to IVIg [Hahn et al. 1996b; Mendell et al. 2001; Hughes et al. 2008]. Improvement occurs within a few weeks, and rarely recovery may be dramatic, appearing 1 or 2 days after completing the infusion. Usually the benefit is transient (1–6 weeks) with 50% of patients relapsing within weeks to months and subsequently requiring regular infusions to maintain maximum improvement. Patients with a progressive course or predominantly sensory deficits with tremor may be less likely to improve….Improvement was noted as early as 10 days after therapy.”
When I did not improve and my local neurologists stopped IVIG, the Mayo clinic Dr stated- “You probably did not have enough IVIG often enough.”
Referring to the above, 30-50% of patients do not improve. You may be one of those for which IVIG is not helpful.
Moreover, in some studies, it has been demonstrated that some patients respond better, or worse, with certain brands of IVIG.
I agree with Jim-LA’s suggestion- Ask your doctor about lower infusion rates and about using a different manufacturer of the IVIG.
Some people find that pre-loading with water the day prior and continuing to intake a lot of water as well as benadryl on the day of infusion to be helpful. My doctor ordered the benadryl to also be given through the IV prior to the start of the IVIG as part of my on-going prescription.
I did not find ‘talk therapy’ to be helpful because the talkers all dwell on their problems, not on solutions and positive thinking. Do what you can to get treated, study all you can to know your condition better and above all, focus on happy things and things you can do. Figure out adaptions to help you do what you need to. See an Occupational therapist for help with Activities of Daily living (ADLs). Dwelling on what you’ve lost is a slippery, never ending downward spiral.
Two frogs jumped in a pail of milk. On, no! After a while one frog said. ‘that’s it, I’m tired, I quit’ and that frog drowned. The other frog never gave up, kicking and swimming until- lo and behold, some curds formed and she hopped out!
