Jim-LA
Your Replies
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April 11, 2016 at 8:01 pm
Tom, you may wish to look into Alpha Lipoic Acid. It’s over the counter and has no side affects for most people. There was a clinical trial here:
https://clinicaltrials.gov/ct2/show/NCT00962429It was studied and reported on in this article:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2836194I’ve been taking 1200MG per day and it seems to help me. Others have reported a return of minor symptoms when they discontinued it. The symptoms went away when they restarted taking it.
Not all ALA is alike; I researched it and found the one here that I take:
http://www.supplementwarehouse.com/viewitem.asp?idproduct=162545My CIDP is still in remission since onset in 2008. However, it left me wheelchair bound. I hope you continue to do well and stay in remission!
April 11, 2016 at 7:23 pmWe all wish diagnosis could be simple and sure. The fact is that everyone seems to have a slightly different set of symptoms making it more difficult to diagnose. Please read the following booklet, start on page 14 “diagnosis”:
http://30g7el1b4b1n28kgpr414nuu.wpengine.netdna-cdn.com/wp-content/uploads/2012/01/OverviewENG.pdfApril 5, 2016 at 4:59 pmSusan, I have no first hand experience at Mayo. However, other members here have cited Dr Bartleson in Neurology as very knowledgeable: http://www.mayoclinic.org/biographies/bartleson-j-d-jr-m-d/bio-20053090
Also Dr Tracy seems to be the current CIDP/GBS specialist at Mayo:
http://www.mayoclinic.org/biographies/tracy-jennifer-a-m-d/bio-20055242April 4, 2016 at 8:54 pmThere are several Mayo Clinics in different States with different staff. The one in Rochester MN is a Center of Excellence. Mayo locations are listed here: http://www.mayoclinic.org/about-mayo-clinic
Which location are you interested in?
March 31, 2016 at 5:17 pmEMG,
Testing is important to determine if the disease is still active. Nerve Conduction/Velocity and Spinal Fluid tests are often used. Treatment usually follows after the test results are understood.
Please read the following for some valuable info, especially the section about diagnosis:
http://30g7el1b4b1n28kgpr414nuu.wpengine.netdna-cdn.com/wp-content/uploads/2012/01/OverviewENG.pdfIf you can share your city, we may be able to suggest some doctors or treatment centers near you.
Jim
March 29, 2016 at 7:07 pmI had a similar experience with the rarity of GBS in 2010. I was taken to the ER, spent all day with no results and went home. Overnight I fell and broke my toe in the process, but I couldn’t feel the pain because GBS numbness had already set into my foot. I spent most of the next day back in the ER, this time they diagnosed me with GBS.
I was admitted to the ICU and started on IVIg the next day. Things got worse even after 7 days of IVIg.
If I knew then what I know now, I would have started with 3 days of Plasma Exchange followed by a week of IVIg. This, I believe, would have stopped some of the permanent nerve damage I suffer today.
There are many treatments available today, what has your mom been given?
March 24, 2016 at 3:54 pmSome of us, like me, seem to have less benefit from IVIg. What worked best for my CIDP was Plasma Exchange. Perhaps you should discuss this approach with your doctor to learn if it might benefit you. Rituxan is another possible treatment you may wish to explore. Prednisone, or other corticosteroids, offer yet another treatment approach. To learn more about these options, do a keyword search in the Forums.
March 22, 2016 at 6:22 pmYou might want to look into having your doctor infuse a little benadryl before IVIg, perhaps 15-25MG. They can also reduce the infusion rate so you can tolerate it better. If your reactions are because of the IVIg, you could try a different product or looking into SCIg.
Here are some links discussing side affects. The first one is from one of the leading manufacturers of the IVIg solution (you might try theirs next time if you are using another brand):
http://www.gammagard.com/primary-immunodeficiency/patient/liquid/IV/Side-Effects.html
http://primaryimmune.org/treatment-information/immunoglobulin-therapyAlthough rare, some people have had an Aseptic Meningitis reaction from IVIg, you can read more about that here:
https://forum.gbs-cidp.org/topic/pain-management-helpFebruary 26, 2016 at 3:54 pmA comparison of alternative meds is listed here:
http://neuromuscular.wustl.edu/mtime/immunerx.htmlPerhaps a discussion with your doctor could help identify better choices for your CIDP plus fatigue.
February 25, 2016 at 4:33 pmPeripheral neuropathies can sap our strength and make us lethargic at times. So can some of the medications our Doctors have us on. Prednisone caused me to feel sleepy and tired most of the time. What meds are you taking? Perhaps there are alternative meds that can do the job without the side affect of weariness? You might want to discuss the fatigue issue with your Doctor and see if different meds could improve your situation.
February 24, 2016 at 9:25 pmGBS can damage the nerves (Myelin and Axons) that control the muscles. The degree of damage and repair varies widely by individual. If the nerve damage was substantial enough to result in some muscle atrophy, I could see that getting in the way of joint replacement recovery.
February 24, 2016 at 9:16 pmGBS usually peaks in a couple months and diminishes. Those afflicted often return to normal health in a year or two. Some have residuals that last beyond one or two years.
Its unclear whether Pulsed Electromagnetic Field Therapy can contribute to the repair of damaged Myelin, or the even more difficult to repair Axonal damage. Neuroregeneration of the Axons is extremely limited in adults. Nonetheless, studies have shown a reduction in pain from regular use of PEMF.
CIDP (the chronic form of GBS) would be even less likely to be treated by PEMF, but I can’t see where additional damage would result. Those patients willing to undergo the treatment would probably have to pay for it themselves. Insurance companies rarely pay for unproven and experimental treatments.
Could it be that Mr Comerford’s improvement would have come about naturally without PEMF?
February 20, 2016 at 9:28 pmI had home IVIg using a PICC line (central catheter). The infusion rate is far faster than using a slow IV line. A Port is another option for an even faster infusion rate, if you can handle faster. The nurse stayed for the whole treatment. I’ve not heard of them leaving after they get things started, I think that would be illegal, at least in California.
An even lower cost in-home treatment would be via SCIg. Many people can give this shot to themselves without the need for any on-site nurse (after the first 1-2 treatments). The fluid is injected under the skin (slowly) and does not go directly into the blood stream. It “leaks” into the blood stream over a longer duration avoiding a too fast infusion rate. You can also go out and about while it is working on you. This approach has many benefits for those that can give themselves (or a spouse, friend, parent) a shot. More info here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2817783February 18, 2016 at 3:29 pmThis form of CIDP is more resistant to traditional IVIg treatment. Plasma Exchange may be a better treatment option to keep the disease from doing much more damage. You may wish to look into treatments using Rituxan as this may offer better hope for recovery in your cousin’s case.
A technical discussion of the IG4 antibody can be found here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3959751A recent summary:
http://www.practiceupdate.com/content/2015-top-stories-in-neurology-cidp-unresponsive-to-therapy/31536If you can give us your city, we may be able to suggest some medical providers.
January 5, 2016 at 9:42 pmI remember that all over itching feeling. I used to get it a lot, now it hits my legs and feet off and on. I found that Restless Legs Relief tablets from Magnilife stops mine, and pretty quickly too.
I too still have residuals since my bout with GBS/CIDP in 2008. Fatigue from exercise is one of them, especially below the knees where I’m still quite paralyzed. I don’t have FMS or CFS and am happy about that, my wife has both (not from GBS). Have you tried Savella (milnacipran HCl)? It works well for many FMS/CFS patients.
Nerve damage from GBS/CIDP can be difficult to repair. Have you tried Alpha Lipoic Acid? It has helped some of us if taken at a dosage of around 1500MG per day. I take it daily.
Best of luck for your future health!
