Living with M.S.

"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become.
Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)

Showing posts with label myelin. Show all posts
Showing posts with label myelin. Show all posts

Saturday

Did COVID-19 flip you into an MS flare-up?

 Had COVID-19 yet? Did it lead to an exacerbation (relapse or flare-up) of multiple sclerosis?

You’re not alone in that. Tons of MS warriors can share similar stories of symptoms arising, reappearing, or intensifying after they battled the pandemic virus.

 


It’s the nature of the MS beast.

 The Cleveland Clinic lists MS as an autoimmune disease. That puts MS in a group with such conditions as these (listed on Web MD):

  • Chronic inflammatory demyelinating polyneuropathy
  • Graves disease
  • Guillain-Barre syndrome
  • Hashimoto’s thyroiditis
  • Inflammatory bowel disease (IBD)
  • Multiple sclerosis (MS)
  • Myasthenia gravis
  • Psoriasis
  • Rheumatoid arthritis  
  • Systemic lupus erythematosus (lupus)
  • Type 1 diabetes mellitus
  • Vasculitis

 Other lists also include Addison disease, celiac disease, chronic fatigue syndrome, and more. The Autoimmune Association cites more than 100 autoimmune diseases, while pointing out that it’s not uncommon for individuals to battle clusters of these.

 

Holy moley.

 The National MS Society calls multiple sclerosis “immune-mediated.” That’s how autoimmune diseases generally work their wickedness.

 In short, when the body’s immune system goes into action, it begins fighting infection. But in a person with an autoimmune disease, the immune system doesn’t seem to know when to stop. Essentially, it begins attacking healthy cells, tissues, or body structures. For the MSer, this means the immune system goes after myelin, the protective covering on nerve fibers.

 

And that can cause all kinds of havoc.

 Personally, I had a very mild case of COVID. I’m pretty sure it was the Omicron variant, breaking through the vaccinations I had received. I coughed pretty hard (like a cold’s chest cough) for one night. I had extra hearty headaches for a couple of days. Then it was over.

 

Except it wasn’t.

That’s when MS sent me whirling with its nasty old vertigo for a couple of days, coupled with fairly significant fatigue. My vision blurred in the same eye that first pointed doctors to identify MS via optic neuritis more than a decade ago.

 Ugh.  It was an MS flare-up. Doctors tend to tag such episodes, if they arise at least a month after the last time and persist for at least 24 hours.

 

And then, the whole ordeal truly was over.

 I’m grateful that this whole episode was uncharacteristically brief and that it is in my rear-view mirror. We’ve all heard of so many cases that did not go this way.

 If you have MS and have already come through COVID, how did it go for you?

 Because battle the MS MonSter and illness at the same time is no picnic.

 

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 Image/s: Public domain image.

 

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Monday

MS makes me clumsy sometimes.



Some days I wake up and want to be a dragon-slayer. I climb out of bed with great ambitions, hoping to tackle a long list of tasks. I want to work out and run a bunch of miles. I’d love to fill my calendar with all sorts of stimulating and enjoyable activities, especially with people I’ve been wanting to see for a while.

Basically, I aim to put multiple sclerosis on the back burner – as if that were actually possible. Sometimes we can sort of do that for a while, if we’re between exacerbations.

I should have known better today.

This past weekend, I ran a half marathon. Yes, that’s 13.1 miles. And I pushed the pace a bit. So I might have expected to feel pretty spent (and out of so-called “spoons”) for a couple of days.

That’s the staccato rhythm of MS, as I live it:  Feeling good, feeling crummy, feeling good, and so on.

I lounged around yesterday, for the most part. I finished some sedentary projects, but didn’t exert myself much physically. That was a given for the day after a big race.


Today I was raring to go.

I hit the gym for a midday break and cranked out a 5K on the elliptical machine, followed by two miles of track running and weight circuits. Midway through those, I bumped into one of the weight machines, with the metal handle smacking me squarely in the middle of my back.

“Ouch!” It’s not like I don’t already have MS demyelination in that neighborhood. And it’ll definitely leave a mark.

I yelped and grimaced and gasped. Then I kept going with my workout routine.

Eventually, I climbed into my car and reached for my seat belt.

“Yow!” I bent an entire fingernail back, catching it between the car seat and the center console.

Not exactly nimble.

It is certainly shaping up to be an MS-clumsy day. I probably should have seen this coming, as soon as my toes went numb during the first mile on the elliptical.

I almost want to wrap myself up (head to toe) in bubble wrap till this bout passes. And I am evaluating all of today’s remaining calendar commitments to determine which are worth the risks my current clumsiness can bring.

Image/s:
Adapted by this user from public domain photo




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Wednesday

Can this new MS drug reverse demyelination?



Could this be a medical breakthrough for treating multiple sclerosis? MSers may surely hope this is a step in the right direction.

Neurology, Science Daily and other research journals are reporting that a new experimental MS treatment is looking promising as a possible means of reversing nerve demyelination. That’s the primary problem of MS.

Here’s the news, as it has just been released:

MINNEAPOLIS – A new treatment under investigation for multiple sclerosis (MS) is safe and tolerable in phase I clinical trials, according to a study published August 27, 2014, in Neurology® Neuroimmunology & Neuroinflammation, published by the American Academy of Neurology


The phase I studies were the first to test the drug candidate in humans. Studies with animals showed that the drug, which is called anti-LINGO-1, or BIIB033, may be able to reverse the demyelination of the nerves. Anti-LINGO-1 blocks LINGO-1, a central nervous system protein that prevents myelination.


Current treatments for MS work to reduce new damage to the brain, but do not repair new or past damage. In MS, the body’s immune system begins to attack the myelin that acts as insulation around the nerves in the central nervous system. This makes it more difficult for the nerves to send messages to and from the brain and spinal cord.


In the study, 72 healthy people without MS and 47 people with either relapsing-remitting MS or secondary progressive MS were given the drug or a placebo. The healthy participants received either a placebo or one dose of the drug by an injection. The people with MS received either placebo or two doses of the drug two weeks apart. In both groups, participants received varying amounts of the drug, ranging from 0.1 mg/kg to 100 mg/kg. 

The occurrence of side effects was similar for people who received the drug and those who received the placebo. Most side effects were mild to moderate and were not related to the drug. Side effects included headaches, upper respiratory infections and urinary tract infections. There were no serious side effects or deaths. 


There were no significant changes in vital signs, EKGs or other safety tests of the drug. Doses of 10 mg/kg and higher resulted in concentrations of the drug in the blood that were similar to or higher than the concentration that was associated with 90 percent of the maximum remyelination effect in studies with rats. 


“With these results we have been able to start phase II studies to see whether this drug can actually repair the lost myelin in humans and have any effect on restoring physical and cognitive function and improving disability,” said study author Diego Cadavid, MD, of Biogen Idec in Cambridge, Mass., which developed the drug. 


Cadavid is a member of the American Academy of Neurology. The study was supported by Biogen Idec. Learn more about multiple sclerosis at AAN.com/patients.




The actual chemistry of the drug and its action on the body has not been published at this point. However, MSers and those who care for them are watching and waiting for additional reports on the safety, efficacy, and potential governmental approval of this new medication for MS.
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