Does Too Much Confusion or Noise Bother You?

Throughout all my years living with MS, I never thought of this question as being related to this disorder. When I was younger, I just assumed it was the result of my chaotic life. As I got older, I attributed to just that—age. Not long ago, I read that noise and confusion may be bothersome to people with MS. But it’s not talked about very much, and I do read about MS actively in a number of sites.

Recently, my husband was grinding rock for hours in the backyard, and I thought I was going to flip out; the earplugs weren’t able to keep all the persistent noise out. Out of curiously, I went on the Reddit multiple sclerosis group and posted this:

Does Too Much Confusion/Noise Bother You? These drives me nuts, especially if it’s loud and going on for a long time. I’ve been using earplugs a lot, or have to get away from it. I used to blame it on being an older age, but I’ve read that this is common in MS.”

 Go to the right place to get a good answer.

Wow—83 upvotes so far and 49 comments. That was just less than a day ago, and the comments are still coming in. I wasn’t alone, as I read “Yes!” after “Yes!!” after “Yes!!!”.

While the comments were coming in, I wanted to know more. So, I googled ‘noise sensitivity and MS’. VeryWell Health states This condition, called hyperacusis, can be among the subtle effects of MS. This sound sensitivity can interfere with your ability to concentrate, socialize, or even sleep. Symptoms related to hyperacusis may wax and wane. Hyperacusis can result from damage to parts of the brain from MS…

Long ago, I had reached the stage that I don’t automatically assume all my quirky problems are caused by MS. Boy, was I wrong this time. My continued search led me to a 2018 post by Healthline about what triggers sensory overload: When surrounded by too much noise, exposed to too many visual stimuli, or put in new or loud environments, many people with MS report experiencing confusion, fatigue, and pain. Sometimes, sensory overload is related to myoclonus, a stimulus-sensitive symptom that can cause involuntary jerking of muscles.

 

 What the Reddit group said.

 There was much more feedback than I anticipated. Specific, useful comments were made after most of the ‘yesses’:

“I didn’t know this was MS potentially! I can’t focus and get really overwhelmed/irritable with lots of noise around me. Light too. I just think I’m a cranky adult baby.”

 “Yes!  While I drive — so hard to concentrate on everything with MS brain. And I’m not that old, yet. Just turned 49.”

“Yes. When I go to the grocery store… the lights, the noise, tons of signs everywhere. My brain gets tired easily with the more it has to interpret.”

“Your description is spot on for me too.  I’m still trying to convince my neurologist that it’s an MS thing, they just said it’s tiring for everyone.”

 “YES!!! I used to think it was me being cranky…but if I have more than one stimulus, like someone talking to me plus (any of the following: TV or music or one of my kids trying to talk to me or phone rings or anything else you can think of!)”

 “Sure is a problem for me, and has been for a long time — at least since I was in my late 30s (I’m now 57). I carry earplugs with me at all times.”

 “Yes loud, loud noises or lots of layers of noise I find so very uncomfortable. Sensory overload is common but not spoken about much!”

“Consider getting tested for audiological (and visual) processing disorder and chat with OT about a full cognitive assessment. If you are in the workforce, you may need workplace accommodation for your disability. For my spouse everything changed after reading the audiology report. It’s been really helpful for me to have the written results to explain my issue to loved ones.”

 “Yes. I just got some noise cancelling headphones a month ago and they’re priceless. It made everything better and it made sure that my energy lasted longer.

 “Recently, I’ve gotten really jumpy. Like for instance I’ll be on the computer at work and someone will walk into my section of offices and I like jump out of my skin. I don’t know why, but that’s been really bothering me lately.”

“I too thought it was just me!!”

 “YES and YES! I had to give up driving. I also cannot sleep at night unless it is absolutely dark & quiet, so have to wear ear plugs & a night mask. I still have some insomnia nights where I am just too wired to sleep.”

“Yep. Some peoples’ sneezes feel like a grenade going off in my head. There’s a list of noises that cause me physical pain…

“Absolutely. I get incredibly frustrated and just want to jump out of my skin. I have asked to be moved to a different table in restaurants, I’ve left events or parties (sometimes I just need some time in a quiet spot, other times I just leave), I’m always asking my family to turn down the tv, etc. etc. I turn into a “rather not nice” if it is continuous with no escape.”

After reading the comments, I’m feeling ‘normal’.

Spreading the Word

Initially, I was beating myself up wondering, “Where have I been? Am I really that much out of touch?” But then I rationalized that VeryWell Health used the word “subtle”, and Healthline’s article also said that these things really aren’t talked about much. The specific, quick responses on the online Reddit group confirmed that this needs to brought out from under the rug.

What to do? Educate and communicate! It’s not all in our head, and there is a valid neurological explanation. Although we have to live with this and can’t prevent it, sharing information and solutions matter. I just put noise cancelling headphones on my shopping list.

If your doctors or others blow you off, show them this article. Being advised to reduce stress and fatigue may help, but it is easier said than done.

 

Debbie Petrina
Author of Managing MS
www.DebbieMS.com

New Release!

Managing MS
A Roadmap to Navigate Multiple Sclerosis

It’s done! The second edition of my book Managing MS is out, and I would love for you to read it. This edition is updated and enhanced—it’s amazing how much has changed and happened in ten years.

As in the past, my mission is to continue educating anyone dealing with MS in an easy, uncomplicated way. In addition to the apparent walking difficulties associated with MS, most people aren’t aware of the numerous invisible symptoms and stigmas that are part of the disorder. “What to know, what to do”, is all in one place.

This second edition has more information, resources and links for readers to reference throughout the book. People acquainted with an MSer will learn how to help them. Read what my friend Dave Bexfield, founder of www.ActiveMSers.org has to say:

“Debbie Petrina has managed to improve her no-nonsense, been-there-done-that guide to navigating the often, choppy waters of multiple sclerosis. For personal advice without the unnecessary puffery, it’s just what the doc ordered.

If interested in a copy, here’s the link:  http://debbiems.com/orders_275.html  If you like it, please write a review on Amazon. or wherever you bought it. And then, spread the word to help others understand multiple sclerosis!

www.DebbieMS.com
Author/MS Consultant/Living with MS

Getting MS Stem Cells Internationally for MS Damage Repair

                                         Dr. Louis Cona and Debbie Petrina

I did it! And would do it again.

After much research and living with this beastly disease for 39 years, I found the opportunity I had been waiting for and took it.  I am 64 years old, in perfect health, and probably would not see anything like this available in the United States for the rest of my life. And, it was not expensive relative to anything else out there for treatment that suited me.

I never took a disease modifying therapy/pain pill, practiced wellness (diet, sleep, exercise…) and am a paraplegic; though looking at my fit 105 lb. frame you would never think I had MS, or the other 10+ symptoms I have had to manage.

Where?

I went to DVC stem (https://www.dvcstem.com/ ) in the Cayman Islands, which stands for the Da Vinci Centre.  Though existing for over ten years, the clinical trial for MSers began only about one and a half years ago.  No, it is not considered a cure, but the purpose is to repair damage caused by MS and regain function. What makes them so special?

  • It is a pioneer and practice by Medical Director Dr. Louis A. Cona, a licensed physician and surgeon, who did transplants and general medicine for forty years. He has a General Medical Office on Grand Cayman in addition to the Da Vinci Centre.
  • They are one of the most highly regulated clinics in North America offering this type of expanded cellular treatment. fully licensed and inspected by the government of the Cayman Islands. As a British Overseas Territory, healthcare regulations are extremely strict, on par with the US, UK, and EU. The entire medical staff is fully registered and licensed, and the stem cell protocols are IRB reviewed and approved by a board in the United States.
  • DVC Stem is partnered with Vitro Biopharma, an award-winning medical laboratory located in Golden, Colorado, which is fully FDA registered. Cells are only sourced from American Association of Tissue Bank (AATB) certified suppliers of full term, ethically US donated human umbilical cords. The selection of these donated tissues is extremely regulated and strict. All of these cells are expanded using safe and standard protocols and are then flown overnight in sub-zero containers directly to the clinic for immediate treatment. To ensure maximum treatment effectiveness, the cells are expanded to as much as 300 million cells before being administered.  http://www.vitrobiopharma.com. There is no other country that has these standards.
  • DVC Stem uses cord tissue-derived mesenchymal stem cells sourced from US-donated, full term human umbilical cords. While other common sources of stem cells are fat tissue or bone marrow taken from the patient directly, there are many benefits to using cord tissue. Cord tissue-derived cells are essentially “new”, in their most primal state, free from the effects of aging or disease. Additionally, they are minimally invasive to the patient, without the need for any extractions, free from immune rejection, and have zero risk of transferring viruses or other communicable diseases.

The Procedure

  • Treatment consists of a two-day period including a 3-hr. IV transplant of 300M cord tissue-derived stem cells, as well as a variety of therapies designed to aid stem cell activation and potency (chiro, physiotherapy, acupuncture, lymphatic massage, etc).  I was delighted—no chemo, immune-system wipeouts, hospital stays!!!
  • To apply for the treatment, a phone consultation with Dr. Cona is arranged to discuss your specific case and candidacy for treatment in depth. He is very selective in approving potential patients.
  • After the consultation and acceptance by Dr. Cona, I was given two packets of information to be completed by me and my doctor, as well as a two-page list of current tests, labs, doctor visits, vitals… that needed to be performed. The purpose is to rule out any diseases, infections, illnesses etc. to prevent diverting the cells from repairing something else and not MS damage.  (It was maddening, but I thought it made so much sense.)
  • I researched everything I could think of, and personally talked with others who had actually gone to DVC for cells.  About 150 MSers went there over the past year and a half. Not one person has had bad side effects, and all showed different types of improvement in different ways.

Of special note is my personal assessment/professionalism of all staff, the sterility and comfort of the clinic.  Dr. Cona was personally with me when he did the three-hour infusion in all his sterile garb, and we talked non-stop the entire time.  He wants to know his patients, and at discharge, he said that I or my physicians should feel free to call him anytime.  He has been courted by other countries (Panama, China, India) to partner with him for knowledge and profit, but has declined all of them. His only interest is his patients’ well-being, not profit.

After returning home, follow-ups or “markers” of MRI’s etc. are requested to determine progress at various intervals.

My Progress

I put a list together of all of my MS symptoms, and have kept a journal since May 29, 2019 that was my IV date.  It has only been two weeks, and by June 12th here are some specifics from my journal:

May 29, day of infusion
Very bad headache, dizziness, light-headedness, foggy throughout evening. Trouble sleeping.  Symptoms all gone the next morning.

June 2
Overall, feel good.  More endurance, ability, time doing aquatic water therapy (one hour).  Clear head.  Feel stronger despite rigorous pace of travel and unpacking, etc after trip.

June 7
Continued as above. Today, balance seems improving.  Took Grizzly on his entire walk this morning without having to hold on to an armrest.  Spasticity seems to show improvement.  Less tremors and tightness, especially in the morning when I get up. Was able to do 9 push-ups on wall in pool.  Could not do this before.

June 9
Did 10 pushups on wall in pool. No nap today—just a 45-minute lay-down– very busy all day.  (yesterday was a high-anxiety day/ 112-degree day).

June 11
Spasticity definitely improved:  longer stretches between baclofen pills (3 instead of 6 pills/day), easy to get catheter in, sometimes start to pee without catheter.  Balance getting better–washed hair with both hands and am able to do many things without needing to hold on with one hand for support.  Feeling stronger—did 12 pushups on side of pool. Seems easier to move legs around and up, though I still can’t do it on my own.  Only lower back pain now.   I can hold a pen more securely and write better. Bowels still messed up. (Note: this is happening on a day following 3 days of high anxiety/stress and excessive near the triple digits.)

June 12th
Today is a “pay day”.  I have been pushing too hard and the heat/anxiety was overwhelming.  I’m going to listen to my body and just rest and sleep.

To learn more about the DVC stem cell treatments, I recommend visiting https://www.dvcstem.com/.

Additionally, here is a link to an article put together on how stem cells are used to treat the symptoms of MS: https://www.dvcstem.com/articles/stem-cells-for-ms/, and an article about David Lyons, founder of the MS Fitness Challenge: https://www.dvcstem.com/articles/david-lyons-ms-fitness-challenge/. Being a member of David’s site enables persons to receive the stem treatment for $17,500. David went to Dr. Cona in Oct. 2018 with a leg that was dragging with a dropped foot.  He is now jogging!

Would I do it again? Absolutely! I had nothing to lose except my time and $22.5K for total fees and all travel expenses. It was safe with no side effects. At the date of this post, Pharmas offering treatments in the U.S. cost $50K-$70,000 annually for DMT’s (disease modifying therapies) for MS. They are only effective <50% of the time, have side effects, and require intensive follow-up that is exhausting. I was not desperate enough to consider the high risk of HSCT in U.S. clinical trials.

Stem Cell Update—January 20, 2022

Since my infusion, my neuropathy symptoms remain improved–less numbness, burning and stabbing sensations. Hand coordination, sensory and strength remain good e.g., can button buttons, grip a pen and write, feel objects in my purse, shuffle cards… (could not do any of these things for years prior to receiving the stem cells) Much less overall fatigue and more energy since the procedure. Cog functioning is very good except for forgetfulness, that is probably due to my age. No improvement in bowel/bladder functions, or ability to walk. Can stand, but only for long enough to pivot or do ten partial leg squats holding on with both hands. I have no doubt after all of this time that this stem cell procedure was successful for me.

Debbie Petrina
Author/ MS Counselor/Living with MS 39 years.
http://debbiems.com/

 

 

 

 

 

 

March is MS Awareness Month: Education!

March 2018

I let my hair down last night.  I posted a negative, distressing message on FB.

I have just reached my 38th year of living with MS, and I was in one of my distressing moods.  Don’t we all have them, MS or not?

This is MS Awareness month, and I guess I was in one of my “down” moods and irritated by the upbeat MS ads I had been seeing everywhere. I was tired of all the happy, happy posts on FB, and wanted to express my real feelings at that time.

Truth is, people need EDUCATED about MS.  It sucks. It’s hard. And I’m tired of the pretentious posts by people who glorify that that “MS” doesn’t define me!  And they show people with MS doing all kinds of things with wonderful results.

I want honestly. Realism.  Does that even exist anymore?

So, my contribution to MS Awareness month is this: Please read the following old post of mine and get educated.

For all of you that so generously given me your support, I can’t thank you enough.  It’s lifted the air under my wings, and when ready, I will move on.  I love you all.

Debbie
www.DebbieMS.com
Author, Trained MS Counselor, MS Survivor

A Day in the Life of an MSer

 “What do you do all day?” (Posted on March 20, 2012)
https://blog.debbiems.com/?p=51