I have MS

[redkow97]

About the same time America started freaking out about corona virus, i started getting real sick in my own creative way. 

I felt “unsteady” 2/29 and assumed i was getting a flu bug. 

By Monday, 3/2 i felt weird driving into work, logged on, and couldn’t see straight enough to read my monitor. 

Drove home and slept for 5 hours. Woke up, rolled to my right, and the room spun for 20 seconds. That happened off and on for the next 24 hours. 

physician assistant i saw 3/3 said positional vertigo and sent me to vestibular PT.  After 2 sessions in 3 days, the left half of my face stayed to become paralyzed, and i was losing strength in my right leg and arm. My vision was also clearly “double,” rather than just blurred. 

Got into an ENT, still being treated for vestibular symptoms. ENT sent me fir an MRI, and i have 10-20 lesions on my brain. “A slam-dunk case of MS,” per the neurologist. 

Official diagnosis was 3/13, when i started steroid infusions.  10 days since the last infusion, i’m On an oral steroid taper, waiting on approval from insurance for MS drugs to be covered (the infusion is covered, the $30k drug may not be)

so i feel 90% better in daily activities, but my workouts suck ass, and take a ton out of me. My balance is still pretty bad. I think i’ll be fine to ride (and pedal) again eventually,  but i’m Anxious to get on a treatment plan. The draw to the one i’ve Chosen is that it’s only 2 infusions a year. 

The whole thing has been a big shock, but i’m Taking it in stride. Girlfriend and her family are tremendously supportive, and i’m Not one to let this get me down.  

Really sharing in hopes someone else recognizes their own symptoms sooner, and doesn’t waste days going to an ENT. 

[SpecialEd]

47 minutes ago, redkow97 said:

 

The whole thing has been a big shock, but i’m Taking it in stride. Girlfriend and her family are tremendously supportive, and i’m Not one to let this get me down.  

I am very glad that you have the support of these people. As you say, it's been a big shock--I certainly get that. I know a few people who have MS, and they have found a way to manage it.

Edited March 25, 2020 by SpecialEd

[Tpoppa]

Sorry to hear that.

That's a very quick diagnosis of MS.  Sometimes it can take years to identify and diagnose.  So many auto immune diseases, lupus, ms, mg, etc all have very similar symptoms.  I've been going through it with my GF for years.  Probably doesn't seem like it....but if you do have MS it's better to know sooner than later and get moving on a treatment plan.

Having MS 20 years ago was much different than today.  Treatment, mitigation, and prognosis have come a very long way.  It can be managed so much better with way less impact.

Tip - If you are still dealing with the Vertigo, try a CBD vape.  My GF dealt with Vertigo for months, sometimes for 2-3-4 hours without a break.   The Vertigo meds didn't do a damn thing, but CBD or marijuana would stop the Vertigo in seconds...literally seconds.

   

 

[Tonik]

Sorry to hear this, but it is very manageable these days. You are going to be on man.

[snot]

Sorry to hear.

A friend of mine said the swank diet saved him and has helped him manage his MS. He was at the point of needing a wheelchair when he started the diet. He was also in his 50s when it all started and is still working in machining.

http://www.swankmsdiet.org/the-diet

Edited March 25, 2020 by snot

[redkow97]

I’m really optimistic right now. Physical activity is suddenly much harder, but if this is the most i ever recover, i’ll Survive. 

Confident that i’m Too stubborn to be very limited. 

Glad to have been diagnosed so quickly. In hindsight, i have likely been having symptoms for almost 2 years, but with only one pretty minor relaps in September 2018, when they thought i had Bell’s palsy.

[SpecialEd]

1 minute ago, redkow97 said:

I’m really optimistic right now. Physical activity is suddenly much harder, but if this is the most i ever recover, i’ll Survive. 

Confident that i’m Too stubborn to be very limited. 

Glad to have been diagnosed so quickly. In hindsight, i have likely been having symptoms for almost 2 years, but with only one pretty minor relaps in September 2018, when they thought i had Bell’s palsy.

One of the wonderful things about being human is the ability and drive to adapt to adversity. Your *stubborn* gene will help you do this. You know we are all behind you and hope you continue to post regularly.

[Pauly]

Wow.. your approach to this entire ordeal is incredibly brave and humble. You have all of my respect (if that means anything?). Attitude and perspective make all the difference.

You are one seriously hardcore mother fucker, Chris. 

[Steve Butters]

Sorry to hear man... My aunt has had MS for as long as I can remember (my first time driving a car I was 12yo and she had an episode so I had to drive us home on the freeway in Phoenix)... She manages well, rides a motorcycle, rock climbs, she probably lives a lot more than a lot of healthy people do... She has her bad days of course but she's in her mid 50s and no signs of slowing down... I wish you the best and I hope they come up with some better treatments to help out. Be strong and don't let it win, you'll be alright. 

[redkow97]

The modern, “aggressive” infusion treatments are pretty impressive for a lot of people. That’s what i’m Hoping to start in the next few weeks. 

I hate IVs and pass out frequently with blood work, etc.  I have 5 IVs in 8 days last week. I chose this treatment plan, in part, because infusions are twice a year.

its not cheap, but my girlfriend has already insisted that we not even consider the cost, when quality of life is at stake.  Turns out that i chose a pretty good insurance plan. 

Total out of pocket for me after 10(?) appointments, including an ER visit, CT scan, and MRI is stil well under $300.  Obviously the drugs could balloon that to my out of pocket max REAL quick, but even that’s totally acceptable to stay active. 

I have 5 kids who think i’m Invincible. Planning to maintain that illusion for as long as possible. 💪🏻

[RidersDiscount]

Sorry to hear about this as well. Hang in there and reach out if there is anything I can do to help. Glad you have decent insurance as well, that will help for sure. 

[bowdog]

Hang in there man and know that we are here for you...let us know if there is anything you need!

[Uncle Punk]

Very sorry to hear about this, I have a bit of knowledge on the subject and would suggest that you seek help at the Cleveland Clinic Mellen center.

I'm a little surprised that it has been determined which of the types you have so quickly. At one point in time they identified five types of MS now they only classify four types. Treatment and prognosis is as different for each type just as how differently each type effects individual people. Do not think that your future looks just like anyone else you know or hear about. Modern treatments and outlooks are getting better at a rapid pace and you should take some comfort in that.

Currently it can be very expensive to be on maintenance medication. One of the problems you will face is that the best latest medicine isn't recognized by all insurance carriers and the out of pocket expenses can be extraordinary until it gets recognized at which time the next best thing is out in the market. Not to worry though most of the drug companies have good reduced rates even for people with high incomes.

My advice would be for you to kill this thread. If you are honest with future employers about your social profiles and they find this you could find yourself getting passed over for jobs or promotions. An employer never knows how often you will have an episode or for what duration it will last. It's hard to depend on the workload you can produce. I know the legalities of those decisions and I also know the realities that go into those decisions. Just a friendly piece of advise.

[snot]

Could move the thread to members only section too.

[SpecialEd]

1 minute ago, snot said:

Could move the thread to members only section too.

That's a great idea, Jen. Though I couldn't argue with Uncle Punk's logic, his comments initially struck me as cruel and rather abrupt. However, the reality is that Punk is right. We all know employers discriminate, often in well-planned and covert ways, in order to "protect themselves" from "bad hires" who may end up costing the organization too much money, either through pre-existing medical conditions or what they think might be a compromised ability to be productive/cost efficient. This is bullshit, but it is real. All Punk is saying is that Tim, and every other youngish person who is likely to change jobs a few times before retiring, should cover his ass. 

[SpecialEd]

3 hours ago, Uncle Punk said:

If you are honest with future employers about your social profiles and they find this you could find yourself getting passed over for jobs or promotions. 

This (very accurate) comment doesn't include the fact that employers who are seriously considering someone as a new hire ALWAYS check the content of his or her social media presence to see what pops up--regardless of how voluntarily transparent you are with them about this.

[SpecialEd]

7 minutes ago, SpecialEd said:

This (very accurate) comment doesn't include the fact that employers who are seriously considering someone as a new hire ALWAYS check the content of his or her social media presence to see what pops up--regardless of how voluntarily transparent you are with them about this.

Sorry everyone! I misreferenced Chris with the name Tim in a previous post. Tim is one of my problem students, and I find it difficult to get him out of my mind, even though school is out.

[serpentracer]

I'm not good with inspiring words.  but I wish you all the best.  

[ScubaCinci]

Sorry to hear that man...that seemed to come on very quickly. Is that normal?

[ricer1]

All the best in dealing with your medical challenges, I'm in the Ville, if you EVER need anything let me know. I'm around the corner! 

[redkow97]

On 3/30/2020 at 8:20 PM, ScubaCinci said:

Sorry to hear that man...that seemed to come on very quickly. Is that normal?

I work for the federal government, so i am not overly concerned with them discriminating based on a medical diagnosis. Frankly, i should be a feather in their cap. 

In hindsight, this didn’t come on quickly at all, and i have been having symptoms for months, if not years. 

The most severe symptoms hit me over the course of a few days, but i have been experiencing weakness in my legs all summer, and just chalking it up to being out of running shape. 

I thibk i mentioned my “bell’s palsy” episode in September 2018 as well. That was likely my first relapse. My balance was off for months after that, and the nerves in my face went dead for like 2-4 weeks. 

Its hard to say when it all started. My legs just feel stiff and heavy all the time now. Still trying to work out daily-ish. My eyes are better, thankfully. I can drive again. I’d ride a motorcycle without hesitation.  

[redkow97]

Well, my stimulus check is going primarily to medical bills, but i can’t really complain much about my insurance coverage so far. 

Had my first ocrevus infusion yesterday. That will be the major expense. Anxious to see how much that will cost, and whether copay assistance will be necessary.

the treatment gives me a mild (99) fever, and a sore throat. Both seem to have subsided as of this morning. 

Watch for my gofundme when this $65k drug costs me $20k out of pocket!

[SpecialEd]

13 hours ago, redkow97 said:

Well, my stimulus check is going primarily to medical bills, but i can’t really complain much about my insurance coverage so far. 

Had my first ocrevus infusion yesterday. That will be the major expense. Anxious to see how much that will cost, and whether copay assistance will be necessary.

the treatment gives me a mild (99) fever, and a sore throat. Both seem to have subsided as of this morning. 

Watch for my gofundme when this $65k drug costs me $20k out of pocket!

Chris, although I'll qualify for SS and Medicare in about eight months, I truly believe that this COVID-19 thing will result in an increased probability that our country will wake up and smell the coffee regarding the NECESSITY for nationalizing healthcare. This is long overdue, and if other countries can do it, we certainly can. I am embarrassed to be a citizen of the wealthiest country in the world that can't seem to get this done.

Edited April 17, 2020 by SpecialEd

[Steve Butters]

If you're so embarrassed, I hear Canada has free Healthcare 🤷🏻‍♂️

[SpecialEd]

8 hours ago, Steve Butters said:

If you're so embarrassed, I hear Canada has free Healthcare 🤷🏻‍♂️

if Trump were a member here, he would be quite proud of how you skirted the issue with an inane comment. Shut off the TV and take a walk.