Jim-LA
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April 1, 2022 at 6:13 pm
I just received the Moderna booster from my local Walmart Pharmacy. I decided on the Moderna because my last three Covid shots were all Pfizer-BioNTech. I got the shot 24+ hours before my next Dialysis session in case Dialysis might lessen the effect of the shot.
The CDC is also suggesting that those who received the J&J or AstraZenica shots get an mRNA booster.
March 30, 2022 at 6:31 pmBased on many discussions about it in these forums, I believe there certainly is such a thing as post GBS/CIDP. Most of those discussions were in 2006 with a few in 2020 and some of those can be viewed here:
https://forum.gbs-cidp.org/forums/topic/post-gbs
https://forum.gbs-cidp.org/forums/topic/6-years-post-gbs
I have personally not experienced any increased symptoms since I contracted GBS/CIDP/MFS in 2008, and I am now a 78 YO. I make sure to take appropriate supplements to help stave off any return of symptoms while lessening the residuals I still have. Some of my muscle weakness is age related, some due to residuals.
The following paragraph is extracted from an article I found on the Internet: ”Many decades after GBS, recovered muscles once weakened by the disease may again grow weak. This is a slow process that occurs over years, and may at first escape the patient’s notice. It is likely that this delayed weakness is the effect of the normal gradual age-related nerve cell loss on muscles that have a reduced reserve nerve supply from earlier GBS.” You can read the full article here:
https://www.angelfire.com/home/gbs/aftergbs.html
GBS seems to affect everyone a little differently when it comes to residuals over time. There is no one-stop treatment for this, but we can make sure we eat right, exercise as much as we can, and replenish certain vitamins that help us moderate the long-term effects of GBS.
John, if you contact either author of the article and learn more about post GBS/CIDP please share the info with us in this thread.
I wish you the best,
Jim
March 23, 2022 at 8:23 pmUse this link to view most recent posts:
Use the “Search Forums” at the top of the webpage to find discussions involving specific topics.
March 20, 2022 at 6:19 pmSome of the symptom’s sound like they could be GBS residuals, some are not common to GBS. This doesn’t necessarily mean it is not GBS related, just that some symptoms may be another disorder. Has he seen a neurologist recently? You didn’t say your location or your dad’s age? Has there been no treatments at all, not even PT?
March 12, 2022 at 10:25 pmTry these GBS-CIDP Foundation liaisons for referrals:
Beverly Baker (Bronx, Queens)
732 597 1115
Michael Ring (Brooklyn)
347 328 3713
March 12, 2022 at 9:21 pmNYC is a vast area and there are many GBS-CIDP laisons there. What area are you in (name, zip code, etc.)?
March 12, 2022 at 3:48 pmThere are a number of alternative therapies that might work for some. My first choices would be Rituximab (Rituxan) or CellCept (mycophenolate). Myfortic (mycophenolic acid) is a good alternative too, but you’ll need regular blood tests. CellCept (mycophenolate) is a first-choice medication for preventing organ rejection since it doesn’t hurt the kidneys or liver like its alternatives. But it can have side effects for some.
In a few more cases, immunosuppressive drugs such as Imuran (azathioprine), Prograf (tacrolimus), cyclophosphamide, Afinitor (everolimus), cyclosporin, Rapamune (sirolimus), and type 1 interferon (INF-1?) and IFN-beta – can be used to limit corticosteroid and immunoglobulin use and may be indicated because of disease progression or poor response despite aggressive treatment with established therapies such as IVIg.
In all cases do your research on each drug and discuss them with your doctors. Maybe get a sample of the meds before getting a large amount to make sure you tolerate it OK. Also make sure they are covered properly by your insurance because some can be costly.
Many of the alternative drugs are discussed here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3487533
There are many discussions about supplements in these forums too. Here are a few that might be helpful:
Vitamins and supplements for CIDP
Deficiencies of vitamins B12 (Methylcobalamin 5000MCG) and D3 (125MCG, 5000IU) have also been known to be involved with CIDP-related muscle atrophy and some members have cited taking such supplements as helping improve their condition. More info here:
https://forum.gbs-cidp.org/topic/b-12-deficiency-amp-cidp
https://forum.gbs-cidp.org/topic/vitamin-d
Pammy, I wish you the best of luck in finding what might work for you.
March 12, 2022 at 3:25 pmPammy, try this link:
March 12, 2022 at 3:22 pmThanks Frances, it’s always great to get a referral from someone who lives in the area.
The closest Center of Excellence to Denver is University of Utah (a 7-hour drive) here:
https://www.gbs-cidp.org/gbs_cfe/university-of-utah
However, there is a nearby GBS-CIDP Foundation chapter you can contact for Neurologist referrals and I think this person is still available:
Evi Makovsky
Denver, CO 80246
303 898 8382
March 12, 2022 at 2:55 pmHi Pammy and thanks for your nice comments! Here is a definition of AFO that better fits my use of the term:
Ankle-Foot Orthosis
Abbreviation: AFO
Any of a class of external orthopedic appliances, braces, or splints devised to control, limit, or assist foot and ankle motion and provide leg support. Typically, orthotics are made of lightweight materials such as thermoplastics.
March 10, 2022 at 4:01 pmBalance problems are one of the many CIDP/GBS residuals. Usually, the extremities like lower leg muscles (foot, toes, ankle) are the areas affected by the residuals. Additionally, vitamin B12 deficiency can bring on balance problems too, along with other symptoms. Vitamin B12 (Methylcobalamin) 5000MCG (I daily) could be indicated if a blood test shows deficiency.
The balance exercises often recommended by physical therapists can include:
- walk sideways for 15 steps one way then the other
- walk one foot over the other for 15 steps (first one foot then the other)
- walk one foot in back of the other for 15 steps (one foot then the other)
- walk forward heel to toe for 15 steps in a straight line looking straight ahead
- walk backward the same way for 15 steps in a straight line looking straight ahead
Wear an AFO on your leg when you do these, so these are not so easy with AFO and balance problems.
Others may have different advice based on their experiences, so stay tuned for their inputs.
February 5, 2022 at 3:36 pm<p style=”text-align: center;”>Live Webinar!</p>
The World of MMN: Living with Multifocal Motor NeuropathyFebruary 24th, 2022 – 1:00PM – 2:00PM EST
The GBS|CIDP Foundation International, in collaboration with PlatformQ, is pleased to announce a LIVE program highlighting Multifocal Motor Neuropathy (MMN). In this program, you will learn more about recognizing and coping with the condition of MMN, from both physicians and patients.
During this live program the following will be discussed:
- Understand what happens in the body when a person has MMN
- Recognize the signs and hallmark symptoms of MMN
- Learn from a real patient living with MMN on how she manages her disease and advocates for herself
- Discuss the importance of talking with your doctor to come up with the right treatment plan for you
Guest speakers include Dr. Jeffrey Allen of the University of Minnesota, Jen, an MMN patient, and Kelly McCoy, Associate Director of Engagement for the GBS|CIDP Foundation International.
Register Today for this LIVE broadcast here:
January 18, 2022 at 3:31 pmIVIg didn’t work for her and the doctors are reviewing her condition:
https://pagesix.com/2022/01/18/jenna-jameson-still-hospitalized-but-not-with-guillain-barre
January 10, 2022 at 2:05 pmAsk your doctor about switching to HyQvia (from Baxter). It requires a less frequent injection that might allow for better healing in-between shots. More alternatives and info about Hizentra here:
January 8, 2022 at 10:33 pmThanks for the input JK. It would be helpful to know a bit more about his reluctance. Perhaps it is your particular condition that he is concerned about?
