Almost 30 years ago, I was referred to a neurologist for an MRI by my family doctor because I was having persistent numbness in one of my legs. I didn’t think too much of it, however, in my follow up visit the neurologist informed me I had multiple sclerosis (MS). At the time, I knew almost nothing about the disease, but I knew I better find out what was happening to me and FAST. MS is an incurable disease and all of the treatment options available can, at best, only mitigate the symptoms. I have been on various medications to treat my symptoms and to slow the progression down. However, the treatments and medications have only provided marginal results. I can say, with 100% certainty, these treatments have NOT stabilized or repaired the damage MS has caused my body over the years.
Unfortunately, over the last several years the course of my MS has been moving faster and is causing more damage with each exacerbation. Fatigue has increased, heat tolerance is nonexistence, irregular gait causes frequent falls (many with injuries including fractured pelvis TWICE!) and many, many more chronic conditions. After decades of coping with the effects of MS, I began exploring other options for treating these symptoms more aggressively. After doing extensive research and having one-on-one discussions with other MS patients, the best treatment option for me is a stem cell transplant. I have consulted with my physicians, who have all encouraged me to proceed with this course of treatment. I am hopeful that a stem cell transplant, where doctors will extract and then reintroduce my own stem cells into my body, may reverse much of what MS has taken away.
Updates (14)
December 19, 2022
December 2022****************
I wanted to provide an update and at the same time wish everyone a sincere Merry Christmas and Happy New year.
Multiple Sclerosis has not stopped progression. Sadly, it is moving forward with its own set of plans, but so am I.
I will be seeing a specialist of specialist very soon. Who knew? I think I am qualified after three decades to be a "specialist of specialist." Imagine that One, "specialist of specialist" seeing another "specialist of specialist."
I am still working for my same employers and have been in person and in the office throughout the pandemic years.
During this timeframe, evolving with MS, working through a pandemic (essential worker on both jobs), and the rise in
violent crimes (record breaking numbers) this has brought unchanneled waters to endure. Fortunately, about a year ago my major employer accommodated 10 hours weekly could be worked remotely.
With that said, now I have the best office and best work associates a person could ask for, i.e., a leather sofa, three weenier dogs and no traffic on those days. Yahoo!
I personally think my passion and empathy for victims with my desire to see crime decrease has been a driving force. Not to mention, my fur member family, Della, Banjo and Greta Lu provide daily encouragement to keep pushing.
OMG, I had a grandbaby, and she will be three this month.To me, that is the most wonderful little person in the world.
When I see that baby's eyes filled with hope, her joy, her smiles, her hugs, I melt.
Moving on to the medical part of the update:
MS has been a fight. MS will continue to be a fight. MS sucks.
After all this time, lets add more by throwing COVID in the picture. I was able to dodge that "C" word for until 12/22. This too is a battle, but the good thing is COVID has a higher probability leaving the body than MS.
I will always be an advocate for Stem Cell and would always recommend the procedure when other treatments have failed. I believe I was able to experience benefits from the procedure even if the benefits did not last lifetime.
Thank you again to all of you, including Help Hope Live for your participation, financial contributions, and prayers for my MS Journey.
May this holiday season and all the ones ahead be filled with joy and love.
Sincerely,
October 27, 2017
I wanted to post an update since it has been one year post Stem Cell Transplant (SCT).
It was another super busy year. In retrospect, knowing what I know now I would still make the same choice with SCT. If insurance would approve I would go through another SCT. For the record, I would recommend SCT for anyone with a debilitating illness. It is not all "pie in the sky" and at times I feel cursed, but simultaneously I feel privileged to have the ability to continue to move forward. After 30 years with MS I am still able to fight, push, thrive and achieve goals. Maybe not at the pace I would like, but I can and will get there.
I must admit MS is doing better after SCT, especially after post treatments (#60 HBOT treatments todate). Unfortunately, in January I was hit pretty darn hard in the rear by a F150 (I know he was texting). I am addressing the back issue from the accident. The body of my vehicle was repaired perfectly, but my back suffered a herniated disc. After this length of time it looks like the outpatient route will need to be stepped up to a more progressive response. From my experiences I have a new respect for people with MS and now a new respect for people with disc issues.
My hat goes off to you.
Thank you for your support with MS, SCT and for me.
I stand 100% behind the medical field to push SCT forward as a standardized treatment.
Please take care of one another and have a wonderful upcoming holiday season…
Photo Galleries (5)
Guestbook
November 9, 2017
So wonderful to hear of good news for such a fabulous person! It does my heart good.
Ann Duffy
September 15, 2016
Hi Janet,
Gary and I have been thinking of you are are so hopeful that this treatment will prove successful for you.
Sally Stephens
August 16, 2016
8/16/16
Janet I have seen people do heroic deeds on occasions but you have are a hero on a daily basis by way of your strength, kindness and intestinal fortitude which serves as an inspiration to all that know you—and in particular to me. You have earned and deserve every chance there is to get better.
Respectfully
PM
Paul Mansky
