No MS'n Around

No MS'n Around Well, my name is Dianna. I'm 38, madly in love with my husband, Steve, who proposed to me 3 months after I was diagnosed with MS. Really they are. That's it!

No MS'n Around (www.NoMSnAround.org) We're not just a bike team - we're all about spreading awareness, being a support network & updating you on the latest news about MS. We got married on Feb. 21, 2009 and our 1st son arrived early on Feb. 21, 2010 (yes! on our 1st wedding anniversary!)

I have 3 sons: obviously, one of them is about to turn 6 yrs old on Feb. 21st; the second one is only 4 yrs ol

d; and the third is only 2-1/2 months old! Although it is very hard being a mommy to 3 boys under the age of 6 yrs old, my sons are my medicine. They are my greatest accomplishment and I thank God every day that he allowed me the opportunity to be a mother. I also thank my husband as without him, having children would not have been possible ;)

Along with MS, I have also been diagnosed with:
-- Trigeminal Neuralgia,
-- Occipital Neuralgia,
-- Adrenal Insufficiency,
-- Hypothyroidism,
-- Chronic Migraines, and
-- Mast Cell Activation Disorder (MCAD)

I live on Long Island. but used to live in New York City in an apartment building 3 short blocks from where I worked as an attorney up until April 2008. I took off the 1st week of April to go for all the MRIs, Evoked Potentials, and Spinal Tap and... I never went back to work. My symptoms came on fast, one after another. I initially went on Short Term Disability, then after 8 weeks I was told I needed to apply for Long Term Disability. Then, months later, I got on Social Security. And, even though I'm an attorney (I still am an attorney - just not practicing now) and worked for insurance companies and know how to read & understand insurance policies, claims, appeals, etc., being sick, going to doctors all the time and then having to deal with this insurance stuff is HARD! It's like a full-time job keeping up with everything. So, although I am an attorney, my health (and being a mom) is my new job. As far as medications, I have been on Copaxone, Tysabri and now Rituxan, which I use off-label as it is not FDA approved for MS. However, Rituxan has been around for years. It's predominantly used for cancer, leukemia & rheumatoid arthritis. However, years ago, doctors found that the Rituxan also stave off MS progression by altering the immune system & wiping out all the B cells. The good news is that it is a very, effective, potent medication that works. It consists of a 6-8 hour infusion in a hospital or infusion center only 4x / year. The bad news is that it costs over $80,000 / dose and it will never be FDA approved for MS as it lost it's patent during Phase III trials. So, the company has to change the medication ever so slightly and change the name and start all over with the Phase I, II & III trails in order to get FDA approval. So, why am I on Rituxan instead of the Interferons (Avonex, Betaseron & Rebif) or the new pills like Gileniya or Aubagio???? Well, I've somehow developed an allergy to IViG and some ingredient in Tysabri (my allergists / immunologists have yet to determine the exact ingredient that I am reacting to) and get very sick. I've also developed an allergy to Aspirin & all NSAIDs. Needless to say, I have what you call a "Drug Sensitivity" issue and choosing medications for me to take for all of my various conditions is somewhat tricky. And, given that Gilenya & Aubagio are so very new, and not a lot of long-term effects of such medications have not been conducted yet, my MS doctors and I felt it was best I go on a medication that has been around for a long time (i.e. Rituxan). In the meantime, I still have some allergic-type reactions to the Rituxan. Therefore, I have to get the 6-8 hour infusion of the Rituxan in the hospital (as opposed to a regular infusion center) and it must be administered by an Allergist / Immunologist (not a MS-specialist).


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Interesting 🤔https://www.facebook.com/share/1Au75VARtF/?mibextid=wwXIfr
11/30/2025

Interesting 🤔

https://www.facebook.com/share/1Au75VARtF/?mibextid=wwXIfr

A new study from the University of British Columbia has revealed that multiple sclerosis (MS) may start showing warning signs up to 15 years before the classic symptoms appear. Researchers analyzed health records of over 12,000 people who were later diagnosed with MS—and the findings were eye-opening.

They found that long before numbness, vision problems, or balance issues develop, people often experience subtle symptoms like fatigue, body aches, dizziness, anxiety, and depression. About 12 years before diagnosis, psychiatry visits begin to rise. Around 8–9 years out, there’s an increase in visits to neurologists and eye specialists for blurred vision and other early clues. In the final years, emergency and radiology visits spike as symptoms become more serious. The year before diagnosis showed the highest number of medical visits across many specialties.

These insights could help doctors detect MS much earlier—through close monitoring, biomarkers, and combining genetic and lifestyle data. While most people with occasional fatigue or pain won’t develop MS, a persistent pattern over many years could be important for earlier diagnosis and treatment.

11/26/2025
Here’s a more concise description of CAR-T therapy for Multiple Sclerosis (MS): https://www.mslivingwell.org/2025/10/14/...
11/16/2025

Here’s a more concise description of CAR-T therapy for Multiple Sclerosis (MS):

https://www.mslivingwell.org/2025/10/14/car-t/






Maximizing your potential to live well with multiple sclerosis should be the goal. Learning more about MS, including treatment options, allows you to make better decisions that can affect you now and in the future.

Study Identifies Early Markers of MS(10/20/25)A new study found that biological signs of multiple sclerosis (MS) can be ...
11/06/2025

Study Identifies Early Markers of MS

(10/20/25)

A new study found that biological signs of multiple sclerosis (MS) can be detected in blood samples years before symptoms begin.

To find out more, click here:

https://www.nationalmssociety.org/news-and-magazine/news/early-markers-of-ms-damage?utm_source=imt&utm_medium=email&utm_campaign=fy26_newsletter_nov_1_fy26

The National MS Society is the leading resource for MS research, education, and support. See how we drive progress to change the world for people affected by MS.

A biology teacher became the UK's first multiple sclerosis patient to receive CAR T-cell therapy. The treatment genetica...
10/30/2025

A biology teacher became the UK's first multiple sclerosis patient to receive CAR T-cell therapy. The treatment genetically reprograms her own immune cells to target MS-causing B cells. Emily Henders received the three-minute infusion at University College London Hospital. She reports feeling normal with renewed energy following the procedure.

The therapy aims to provide long-term remission with a single treatment. This approach could potentially eliminate the need for ongoing medication. Doctors hope it will transform MS treatment by halting disease progression.

https://www.facebook.com/share/p/1Bg12bwkYm/?mibextid=wwXIfr

A biology teacher became the UK's first multiple sclerosis patient to receive CAR T-cell therapy. The treatment genetically reprograms her own immune cells to target MS-causing B cells. Emily Henders received the three-minute infusion at University College London Hospital. She reports feeling normal with renewed energy following the procedure.

The therapy aims to provide long-term remission with a single treatment. This approach could potentially eliminate the need for ongoing medication. Doctors hope it will transform MS treatment by halting disease progression.

https://www.facebook.com/share/17Ly1PYe53/?mibextid=wwXIfr
10/26/2025

https://www.facebook.com/share/17Ly1PYe53/?mibextid=wwXIfr

A series of breakthroughs are fueling hope for curing autoimmune diseases long considered incurable, Sarah Zhang reported in 2024. https://theatln.tc/GGq01P63

More than 40 people with lupus have now undergone new CAR-T cell therapy, and most have gone into drug-free remission. It is too early to declare any of these patients cured for life, but that now seems within the realm of possibility.

“The disease causes the immune system to go rogue in a way that can strike virtually any organ in the body, but when and where is maddeningly elusive,” Zhang continued. Doctors have long believed that Lupus—like other autoimmune diseases—cannot be cured. But two years ago a German study rocked these assumptions: “Five patients with uncontrolled lupus went into complete remission after undergoing a repurposed cancer treatment called CAR-T-cell therapy, which largely wiped out their rogue immune cells,” Zhang wrote. The first patient to receive this treatment has been symptom-free for almost four years.

“CAR-T-cell therapy was originally developed as a way to kill malignant cells in blood cancer,” Zhang continued. But now doctors have hope that it could offer a bigger breakthrough for autoimmune diseases beyond just lupus, including multiple sclerosis, myositis, and myasthenia gravis. “The success of CAR-T has inspired researchers to borrow other—cheaper and simpler—strategies from cancer therapy to kill immune cells gone awry,” Zhang continued. “Not all of these ideas will pan out, but if any do, the next few years could bring an inflection point in treating some of the most frustrating and intractable diseases of our modern era.”

For now, CAR-T for lupus and other autoimmune diseases is mostly available in the U.S. only through clinical trials, which means the majority of lupus patients cannot access the treatment. CAR-T treatments are also long and expensive. “Because each patient’s own cells are reengineered, it cannot be easily scaled up,” Zhang wrote. Still, “even if CAR-T itself is never widely adopted for autoimmune diseases, it has opened the door to new ideas that could one day revolutionize their treatment.”

🎨: The Atlantic. Sources: Jacopin / BSIP / Getty; Velimir Zeland / Shutterstock.

https://www.facebook.com/share/1GSwjRjpCY/?mibextid=wwXIfr
10/17/2025

https://www.facebook.com/share/1GSwjRjpCY/?mibextid=wwXIfr

A Nobel Prize just went to scientists who found a way to stop your immune system from attacking you.

The 2025 Nobel Prize in Medicine has been awarded for one of the most important discoveries in immunology: the biological system that keeps your immune system from turning on you.

Your immune cells are trained to destroy viruses, bacteria, and other foreign invaders. But that power has to be kept in check – or it can misfire, attacking your own organs. The process that prevents this is called peripheral immune tolerance, and it’s largely controlled by a type of cell called the regulatory T cell.

This year’s Nobel went to Mary E. Brunkow, Fred Ramsdell, and Shimon Sakaguchi for uncovering the genetic and cellular systems that make this immune self-regulation possible.

Back in 1995, Sakaguchi identified a previously unknown class of T cells that seemed to hold back the immune system from attacking the body. A few years later, Brunkow and Ramsdell discovered the gene that controlled them – FOXP3 – after studying a rare, fatal autoimmune disease in children. They found that when this gene is mutated, the immune system becomes unregulated and begins destroying healthy tissue.

Two years after that, Sakaguchi made the connection: FOXP3 was the master switch for the same immune-regulating cells he had identified earlier.

These discoveries launched a new field of research. Regulatory T cells are now being investigated in therapies to suppress autoimmunity, improve transplant success, and even enhance cancer treatment by modulating immune suppression around tumors.

Learn more:
Nobel Prize in Physiology or Medicine 2025

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