Patients Multiple sclerosis
Posted on 4/22/20 6:03 PM
stay masked for now. 😷❤️🕊️
Posted on 4/23/20 2:58 PM
@MyMS55 That is all we can do 🦋
Posted on 4/25/20 3:28 AM
Hello all. I'm three months out from my first two months on Mavenclad, after my RRMS was re-classified as SPMS and all the previous treatments I tried (Rebif, Gilenya and Mayzent) all proved completely ineffective at slowing my flares.
I've had to cancel my physical therapy for my bi-lateral labrum tear in my hip, postpone my new post-Mavenclad baseline MRIs because my neurologist says even though my immune system should be back to normal after the hard reset Mavenclad performs, it is still wise not to take the chance and expose yourself, if you can help it.
Now my only escape from being cooped up at home, is the occasional trip to the store to pick up groceries curbside, when I can actually get a time slot for a pickup. I am masked and gloved, and luckily had tons of disinfectant wipes from before they became more valuable then gold.
While I can't wait for everything to get back to normal (especially kids going back to school, which isn't happening until at least next school year here in Wisconsin), I am enjoying having the whole family home all day, every day, even if we do drive each other crazy, considering we have been quarantined for 6 weeks now on account of my condition.
Posted on 4/30/20 3:26 PM
@TheMSDad Your doctor is right: stay safe, therapy will still be there after all this Covid storm... And you're lucky to be your family, enjoy!
Posted on 5/15/20 6:40 AM
Just stay safe and continue using gloves and mask
Posted on 5/15/20 5:36 PM
So, update time. My stupid a$$ county decided to side with the state Supreme Court instead of the Governor, and roll back our Safer-at-Home order and reopen our county, despite the predictions that our coronavirus will spike on or around the first week of June. We already have people who don't follow the order, and this is simply going to embolden them.
I predict a massive outbreak in my county and surrounding counties because of this, since we are a hotbed of commerce and manufacturing, and surrounded by some of the hardest hit counties in NE Illinois and SE Wisconsin. I don't plan on putting my family or myself at risk because of my county's greed.
Posted on 5/15/20 6:13 PM
@TheMSDad Thank you for keeping us updated! I'm sorry to hear about your state, that must really add on another layer of stress that you don't need. I hope that you and your family will be able to stay safe!
Is anyone else experiencing this in their stay? Are you still in lockdown or has your area opened back up for business? What do you think the impact will be on MS patients?
Posted on 5/26/20 6:51 PM
I am so sorry yesoyes imalI'm withy you. I'm only allowed pool therapy.
I moved into a appartment with a indoor/ outdoor pool. I so understand it's been closed since March.
I have tried walking but as I said I'm not supposed to be. I need foot surgery on both feet. In addition I tried yoga made for MS and sitting exsersicing but I have a disc at neck, middle and lower back and a pinched nerve in mid back.
I've been trying to stay moving by doing what I can. Even if it's stretches.
I am taking caution though when the pool does open back up. I've seen pictures of pools and I am currently doing relaspe meds (we decided on pill form this time because of COVID)