Restless Legs Syndrome (RLS) Discussion Board

After volunteering here on the discussion board for about ten years, I thought that I had probably come across most of the issues that we encounter with RLS treatments. But I can across a new one yesterday.

I had the first symptoms of Covid last Wednesday (sore throat) and then tested positive on Thursday when the major symptoms hit. I had an urgent telemed doctor's appointment on Saturday morning. Because I have two Covid risk factors (age and asthma), my doctor wanted me to begin treatment while I was still within the five day window. That is where RLS comes in. She wanted to prescribe Paxlovid pills, but Paxlovid is not compatible with methadone. So, she sent a referral for me to get a monclonal antibody infusion. But it seems that the schedulers for all of the outpatient infusion centers in the city where I live are all off until Tuesday due to the three day weekend (Memorial Day in the US). Since I retired from a 40 yr career where I was always on call 24/7/365, this was a slap in the face to me, especially while I am weak from being sick. They have left me suffering at home (and hopefully I will still be there and will be mostly recovered by the time that they MIGHT call on Tuesday). And all this while they are out enjoying the weekend with their families. And even if they could schedule me for Tuesday, that would put me beyond the five day treatment window. My doctor's corporate system usually sends out customer comment messages after an appointment and are the ever going to get blasted this time around. Here I am with a potentially fatal illness and they gave me on a bureaucratic run around rather than try to find a way to help me.

I can only hope that my Covid doesn't turn bad enough before Tuesday to require a trip to the hospital emergency room for treatment.

And all because the pill that is usually given isn't compatible with the methadone that I take for RLS or the clonazepam that I take for a different sleep disorder known as RBD.

Steve I'm sorry you are suffering not only physically but also the emotional frustration from a lack of speedy appropriate treatment. Here in the UK we are used to such happenings but I don't expect to hear of it in the US. Perhaps, naively, with the US medical insurance system, I am used to hearing of more thorough and efficient treatment. I have no doubt that you will be passing on your strong feelings in the matter but this doesn't help you now.
I hope your symptoms are as mild as possible and improve quickly.
Given your previous experience of A & E inefficiency this is the last thing you would need. Best wishes.

Ah Steve, that so sucks.

How's it going? How are your symptoms? Hopefully they're mild. I've heard from acquaintances who got it, & some felt great pain in the lungs, others felt only a mild flu-like illness, some recovered well and some still feel their lungs aren't 100% after a couple of months. They were all vaccinated fully, so I suspect it has to do with the variant that was caught. I hope you have a mild version. Treat yourself well, be gentle with yourself, rest as much as you can.

Any news, Steve?

The finally scheduled me for three doses of Remdesivir, which is an anti-viral. My doctor wanted me to get the monoclonal antibody treatment, which would have been a single dose, but it is in such short supply that they reserve it for the highest risk patients. While I was sitting through each of my IV treatments (one hour each time), I got to meet three people who got the monoclonal antibody treatment. One of them is undergoing cancer treatment, one has MS and the third is a double liver transplant patient.

I was feeling much better after the first and second doses of the med, but the third dose was yesterday afternoon. I started to have mild Covid like symptoms last night and today, probably because my body is having to process all the dead viral particles and kill off the few live ones that are left. But at least I am not under quarantine anymore.

Rust, were you all vaccinated and boosted? Seems to be spreading like wildfire here in Florida but most vaccinated have very mild symptoms. I saw my neurologist this week and he had it two weeks ago, had very mild symptoms, home tested because his wife insisted and then ended up quarantining. His office is all masked up again. Then I had occasion to be at the hospital twice after that and masks were optional. I did say I am in Florida...

I was vaccinated in one of the earliest rounds because I live in a senior living community that was given the same priority as medical personnel and first responders. I have since received three boosters, the most recent of which was four weeks ago.

The nurses who were running the Covid infusion center said that the current versions of Omicron appear to be extremely contagious, more so than past versions. We were therefore escorted into the hospital through a side door and then escorted out after we were finished. All because management didn't want us infecting anyone else. I know about five people who have had it. Most of them had mild cases, but those of us with added risk factors (I have asthma in addition to being over 65) appear to be more susceptible and the medical establishment is doing everything they can to keep us out of the hospital (I came very close because of treatment delays due to the holiday weekend).

Stainless wrote: ↑

Sat Jun 04, 2022 11:01 am

Rust, were you all vaccinated and boosted? Seems to be spreading like wildfire here in Florida but most vaccinated have very mild symptoms. I saw my neurologist this week and he had it two weeks ago, had very mild symptoms, home tested because his wife insisted and then ended up quarantining. His office is all masked up again. Then I had occasion to be at the hospital twice after that and masks were optional. I did say I am in Florida...

That is interesting that masks have been optional at the hospitals in Florida. My friend winters in Florida. Here masks are required at the hospitals, Doctors offices and Dental offices. I'm in New Mexico.

Steve, my Husband has asthma too. It is such a worry. My niece and her spouse had it a couple of weeks ago. Both vaccinated, etc. Both are still weak. No energy.
Hope you are feeling better soon.

My husband with asthma, too. We wear masks everywhere.