This page contains the edited chat session for the November 2025 meeting. We have used initials to protect the identities of members.
2025-11-01 14:04:23 From BB to Everyone:
Does anyone else in this group have anti MAG IgM?
2025-11-01 14:07:39 From BB to Everyone:
ok thanks
2025-11-01 14:13:19 From Glenn Ribotsky to Everyone:
There are over 300 possible etiologies of acquired peripheral neuropathy, and probably just as many hereditary ones (the Human Genome Project has revealed quite a few of the latter).
2025-11-01 14:15:47 From Glenn Ribotsky to Everyone:
Some Washington University at St. Louis Neuromuscular database information on anti-MAG: https://neuromuscular.wustl.edu/antibody/pnimdem.html#mag
2025-11-01 14:23:34 From Glenn Ribotsky to Everyone:
The big problem is that Barbara has been ill served by the medical establishment to this point. There’s no reason with her lab results she shouldn’t have been prescribed any one of a number of immune modulating treatments.
2025-11-01 14:24:12 From BB to Everyone:
Thank you Glenn, I wish you were my doctor.
2025-11-01 14:26:47 From Glenn Ribotsky to Everyone:
Dr. Norman Latov, who heads the Weill Cornell Center for Peripheral Neuropathy in NYC, has said that all patients with neuropathy should treat themselves as if they were diabetic celiac alcoholics, even if they are none of those things.
2025-11-01 14:28:33 From BB to Everyone:
Um how so?
2025-11-01 14:29:04 From Glenn Ribotsky to Everyone:
Sugar, gluten, alcohol tend to be nerve inflammatory.
2025-11-01 14:29:44 From ME to Everyone:
Talking with other people who have PN really helps and our support group is powerful. I was connected with an older woman with neuropathy and we’ve shared questions and answers. Her close friend asked me why with so many people who have PN isn’t more being done.
2025-11-01 14:30:12 From BB to Everyone:
Ah, OK. I do carry a celiac gene, so it makes sense…
2025-11-01 14:31:22 From Glenn Ribotsky to Everyone:
Mainly because PN won’t kill you, and there’s money to be made from providing symptom easing medications. But perhaps more importantly, we haven’t had famous people with the condition stepping forward to attract attention and research money for it along the lines of Michael J. Fox has done for Parkinsons.
2025-11-01 14:33:18 From Judson Vaughn to Everyone:
Chemo-induced neuropathy
2025-11-01 14:33:57 From Glenn Ribotsky to Everyone:
And Western Neuropathy Association has a specialized support group for that meeting the second Wednesday of each month–www.pnhelp.org
2025-11-01 14:39:06 From LS to Everyone:
Perthes disease is a rare childhood hip disorder caused by temporary loss of blood supply to the femoral head, leading to bone death and regrowth. It typically affects children aged 4 to 10 and may cause limping, hip pain, and long-term joint issues if untreated.
2025-11-01 14:39:26 From LS to Everyone:
Here’s a structured overview of Legg-Calvé-Perthes disease:
🦴 What It Is
• Perthes disease is a condition where the blood supply to the femoral head (the ball of the hip joint) is temporarily interrupted.
• This leads to avascular necrosis, where the bone dies, weakens, and may collapse.
• Over time, the body restores blood flow and the bone regenerates, but it may heal with an abnormal shape.
👶 Who It Affects
• Most common in children aged 4 to 10, though it can occur from ages 2 to 12.
• Boys are affected 4-5 times more often than girls.
• Risk factors include low birth weight, short stature, blood clotting disorders, and exposure to secondhand smoke.
2025-11-01 14:39:29 From Glenn Ribotsky to Everyone:
Beat me to it, Larry. 😊
2025-11-01 14:39:38 From Judson Vaughn to Everyone:
AFO : device to prevent tripping caused by dropfoot
2025-11-01 14:40:03 From Judson Vaughn to Everyone:
Balance is a major topic today.
2025-11-01 14:41:00 From LS to Everyone:
Symptoms
• Limping, often before pain is noticed.
• Hip, groin, thigh, or knee pain, especially after activity.
• Limited range of motion in the hip.
• Muscle atrophy or uneven leg lengths in advanced cases.
🔍 Diagnosis
• X-rays are used to assess bone changes.
• MRI may be needed to evaluate blood supply and early changes.
• A physical exam checks for hip mobility and gait abnormalities.
2025-11-01 14:41:22 From Judson Vaughn to Everyone:
Neuropathic itch
2025-11-01 14:41:32 From LS to Everyone:
Treatment
• Depends on age, severity, and stage of disease.
• Younger children often respond well to conservative treatment:
• Activity restriction, NSAIDs, physical therapy, and bracing.
• Older children or severe cases may require surgery (e.g., osteotomy) to reshape or reposition the femoral head.
⏳ Prognosis
• Recovery can take 2 to 5 years.
• Early diagnosis and treatment improve outcomes.
• Poor healing may lead to hip arthritis or need for hip replacement in adulthood.
• Children diagnosed after age 6 have higher risk of long-term complications.
2025-11-01 14:45:32 From Mike Foxworth to Everyone:
is Matthew Gilmore new to the group
2025-11-01 14:47:27 From Judson Vaughn to Everyone:
IVIG
2025-11-01 14:50:26 From Judson Vaughn to Everyone:
PNSN website: pnsnetwork.org
2025-11-01 14:50:51 From Judson Vaughn to Everyone:
WNA website: pnhelp.org
2025-11-01 14:52:04 From Glenn Ribotsky to Everyone:
Now contrast Jim’s story with Barbara’s. Often it’s just how hard some medical person is willing to fight for you.
2025-11-01 14:54:22 From Glenn Ribotsky to Everyone:
www.pnhelp.org
2025-11-01 14:54:56 From Judson Vaughn to Everyone:
CIPD support group: 3rd Wednesday of the month
2025-11-01 14:56:10 From Glenn Ribotsky to Everyone:
CIDP & Autoimmune Neuropathy Support Group
Meets the 3rd Wednesday of the month.
3:00pm Pacific / 6:00pm Eastern
Host: John Phillips
Contact John for Zoom link: johnphillips@pnhelp.org
Meeting ID: 943 1735 2429
Passcode: 579413
2025-11-01 14:56:23 From Mary Erdman to Everyone:
I need to sign off today. See you next month!
2025-11-01 15:01:35 From BB to Everyone:
I recommend PT: Justin LaLonde,
2025-11-01 15:02:16 From BB to Everyone:
pacificstandardpt@gmail.com
2025-11-01 15:02:42 From Judson Vaughn to Everyone:
While we have some smart people in the group, none of us are medical professionals. We are a support group, sharing information from our experience.
2025-11-01 15:03:01 From BB to Everyone:
Excellent, knowledgeable, Dr of PT, also does virtual PT for people who can’t get there.
2025-11-01 15:10:42 From Judson Vaughn to Everyone:
Tai Chi
2025-11-01 15:10:53 From CW to Everyone:
AARP has online classes for Qigong (similar to Tai Chi) I just started and am loving it
2025-11-01 15:12:38 From LS to Everyone:
Vitamin B12 is generally safe when taken at recommended doses, but high doses or certain medical conditions can lead to side effects or interactions.
Here’s a detailed look at potential issues:
✅ Generally Safe for Most People
• Recommended daily intake: 2.4 mcg for adults; 2.6–2.8 mcg for pregnant or breastfeeding individuals.
• Common sources: Meat, fish, dairy, fortified cereals, and supplements.
• Forms: Oral tablets, injections, nasal sprays.
2025-11-01 15:12:55 From LS to Everyone:
Possible Side Effects (Usually Mild)
• At high doses or with injections, some people may experience:
• Headache
• Nausea or diarrhea
• Weakness or fatigue
• Tingling in hands or feet
• Rare but serious reactions include:
Debra Bray:👍
2025-11-01 15:13:08 From LS to Everyone:
Allergic responses (rash, itching, swelling)
• Pulmonary edema or chest pain
• Dizziness or irregular heartbeat
2025-11-01 15:13:23 From LS to Everyone:
Contraindications and Cautions
• Allergy to cobalt or cobalamin: Avoid B12 supplements entirely.
• Post-stent placement: Combining B12 with folate and B6 may increase risk of blood vessel narrowing.
• Very high B12 levels: Some studies suggest a possible link to increased cancer risk or hip fractures, though evidence is not conclusive.
2025-11-01 15:13:36 From LS to Everyone:
Drug Interactions
Certain medications can reduce B12 absorption:
• Metformin (for diabetes)
• Proton pump inhibitors (e.g., omeprazole)
• Antiseizure drugs (e.g., phenytoin, carbamazepine)
• Colchicine (for gout)
• Vitamin C (in high doses) may reduce B12 availability
2025-11-01 15:13:48 From Glenn Ribotsky to Everyone:
Very high doses of B12 can be overenergizing. I would not do any 5-hour drinks.
2025-11-01 15:13:53 From LS to Everyone:
Neurological Considerations
• B12 deficiency can cause nerve damage, cognitive decline, and mood changes.
• Supplementation is essential for people with absorption issues (e.g., pernicious anemia, Crohn’s disease, post-gastric surgery).
2025-11-01 15:15:01 From Glenn Ribotsky to Everyone:
And all vegetarians should consider a regular B12 supplement. Unfortunately, humans cannot synthesize it from plants like ruminants can–B12 from food is only available from animal products.
2025-11-01 15:15:11 From LS to Everyone:
Vitamin B12 is generally safe, but high doses or certain conditions can lead to side effects such as headaches, tingling, or—in rare cases—serious reactions like allergic responses or elevated cancer risk.
2025-11-01 15:16:09 From Judson Vaughn to Everyone:
Rebecca has her hand up
2025-11-01 15:18:06 From Judson Vaughn to Everyone:
Dr. Dahari’s presentation is on our website under Past Meetings.
2025-11-01 15:18:12 From Mike Foxworth to Everyone:
Tai Chi: there are online courses available. I used to do one from Great Courses. I stopped when my balance got worse. But I may start again and just do it sitting down.
2025-11-01 15:18:48 From Judson Vaughn to Everyone:
There is also chair Tai Chi.
2025-11-01 15:20:30 From Glenn Ribotsky to Everyone:
That sounds like Judson’s Metanx.
Judson Vaughn:👍🏼
2025-11-01 15:21:27 From LS to Everyone:
Be careful with vitamin mega doses!
2025-11-01 15:21:58 From Pat Gualtieri to Everyone:
Dr. Orit Dahari True North Acupuncture & Wellness TrueNorthAcuHealth.com (Ask about Tai chi online)
2025-11-01 15:23:45 From Pat Gualtieri to Everyone:
More info: dahariorit@gmail.com
2025-11-01 15:23:52 From Lawrence Silverberg to Everyone:
https://www.youtube.com/watch?v=7Rvwq_jHdsc&list=PLK_cC8dPfJaLZ3uT3sUENMI0iBFhrNYQl Tai Chi Short Form
2025-11-01 15:25:27 From Pat Gualtieri to Everyone:
Acupuncturist Directory of certified practitioners: directory.nccaom.org Type in zip code
2025-11-01 15:25:47 From LS to Everyone:
https://www.youtube.com/watch?v=ZFVEzeXEgSs
2025-11-01 15:26:43 From LS to Everyone:
The above is the best for beginners!!!
2025-11-01 15:28:53 From Pat Gualtieri to Everyone:
NeuroPT (Neurological PT, PLLC (703) 533-1515 Address: 7115 Leesburgh Pike, #305, Falls Church, VA 22043
2025-11-01 15:31:45 From MG to Everyone:
Kathleen-where are you located? I use a chiropractor for acupuncture here in DC.
2025-11-01 15:32:25 From KB to Everyone:
Replying to “Kathleen-where are you located? I use a chiropract…”:
I am in Wisconsin
2025-11-01 15:32:51 From MG to Everyone:
Replying to “Kathleen-where are you located? I use a chiropract…”:
Ah.
2025-11-01 15:33:10 From KB to Everyone:
Replying to “Kathleen-where are you located? I use a chiropract…”:
Ah inded
2025-11-01 15:34:26 From Pat Gualtieri to Everyone:
Actually, there is an Academy of Neurologic Physical Therapy that maintains a “Find a PT” database. These include Neurologic Clinical Specialist. Check out: neuropathy.org
2025-11-01 15:37:17 From KB to Everyone:
I’s like a copy of this session’s chat: kbtraveler@gmail.com
2025-11-01 15:38:52 From H to Everyone:
Hal would like the chat. email hma@bloostonlaw.com
2025-11-01 15:40:19 From Judson Vaughn to Everyone:
Jud: Send chat to Pam H.
2025-11-01 15:42:42 From Pat Gualtieri to Everyone:
NeuroPT in Alexandria, Va : novaneurorehab.com (advertizes as “Specialized Neurological Rehabilitation
2025-11-01 15:45:53 From Glenn Ribotsky to Everyone:
Chemo-Induced Peripheral Neuropathy (CIPN) Support Group
Meets the 2nd Wednesday of the month
2:00pm Pacific / 5:00pm Eastern
Host: Glenn Ribotsky, glenntaj@yahoo.com
Contact Katherine Stenzel for Zoom link: klstenzel@hotmail.com
Meeting ID: 830 5538 3243
Passcode: 396320
2025-11-01 15:49:25 From MG to Everyone:
Novaneurorehab is not accepting new patients according to website
2025-11-01 16:21:48 From Pat Gualtieri to Everyone:
PLEASE NOTE: THE ADDRESS FOR THE ACADEMY OF NEUROLOGIC PHYSICAL THERAPY ADDRESS IS WRONG. CORRECT WEBSITE IS: Academy of Neurologic Physical Therapy