Popular Post Zealot Posted February 23, 2022 Popular Post Share #1 Posted February 23, 2022 The relapse is full blown. I’ve been in so much pain the past couple days. Seriously to the point of tears. I fell hard again. Legs just buckled, would not support me. Overall increasing weakness in my arms and legs. Cognitive issues. Coordination and balance issues. Some spasticity in my legs. Cancelled my afternoon appts and came home from work. Spent the morning on the phone with neurology and my PCP. Could barely walk. Should have let someone drive me home. Now the PVCs are doing their thing. This is nuts. Sitting on my deck. Maybe I’ll just pass here in the 70 degree day watching my trees and listening to the bamboo rattling in the wind. 4 19 Link to comment Share on other sites More sharing options...
Rattlecan ★ Posted February 23, 2022 Share #2 Posted February 23, 2022 1 minute ago, Zealot said: The relapse is full blown. I’ve been in so much pain the past couple days. Seriously to the point of tears. I fell hard again. Legs just buckled, would not support me. Overall increasing weakness in my arms and legs. Cognitive issues. Coordination and balance issues. Some spasticity in my legs. Cancelled my afternoon appts and came home from work. Spent the morning on the phone with neurology and my PCP. Could barely walk. Should have let someone drive me home. Now the PVCs are doing their thing. This is nuts. Sitting on my deck. Maybe I’ll just pass here in the 70 degree day watching my trees and listening to the bamboo rattling in the wind. Wow. Hope this passes soon. Sounds scary. 1 Link to comment Share on other sites More sharing options...
Wilbur ★ Posted February 23, 2022 Share #3 Posted February 23, 2022 3 minutes ago, Zealot said: The relapse is full blown. I’ve been in so much pain the past couple days. Seriously to the point of tears. I fell hard again. Legs just buckled, would not support me. Overall increasing weakness in my arms and legs. Cognitive issues. Coordination and balance issues. Some spasticity in my legs. Cancelled my afternoon appts and came home from work. Spent the morning on the phone with neurology and my PCP. Could barely walk. Should have let someone drive me home. Now the PVCs are doing their thing. This is nuts. Sitting on my deck. Maybe I’ll just pass here in the 70 degree day watching my trees and listening to the bamboo rattling in the wind. I hope this clears up for you soon, Z. Best! 1 Link to comment Share on other sites More sharing options...
Razors Edge ★ Posted February 23, 2022 Share #4 Posted February 23, 2022 3 minutes ago, Zealot said: Sitting on my deck. Maybe I’ll just pass here in the 70 degree day watching my trees and listening to the bamboo rattling in the wind. If the pain is manageable, not much better way to pass an afternoon. Hoping this is a temporary setback. Take it easy as much as possible. 1 Link to comment Share on other sites More sharing options...
Popular Post Zealot Posted February 23, 2022 Author Popular Post Share #5 Posted February 23, 2022 The clouds are beautiful. 3 3 Link to comment Share on other sites More sharing options...
Razors Edge ★ Posted February 23, 2022 Share #6 Posted February 23, 2022 1 minute ago, Zealot said: The clouds are beautiful. During my lunchtime walk, they looked like a puffy quilt covering the whole sky. Quite pretty! Sun has broken through, so just bright out now. 1 Link to comment Share on other sites More sharing options...
bikeman564™ Posted February 23, 2022 Share #7 Posted February 23, 2022 Hope they can figure it out. Prayers and vibes 1 Link to comment Share on other sites More sharing options...
Dirtyhip Posted February 23, 2022 Share #8 Posted February 23, 2022 This sounds by scary. I am very sad to hear you talk this way. Please do not give up. Sounds like a terrible exascerbation. Are you sure you can't get on a short course of steroids? Seriously, it could be worth it. Get you going again and then get off of them. Tough love here, but i know exactly what this feels like. Steroids suck, but death and giving up is worse. Hugs to you. Many of them. 3 1 Link to comment Share on other sites More sharing options...
Popular Post Zealot Posted February 23, 2022 Author Popular Post Share #9 Posted February 23, 2022 8 minutes ago, Razors Edge said: During my lunchtime walk, they looked like a puffy quilt covering the whole sky. Quite pretty! Sun has broken through, so just bright out now. my view as I lie here. 2 1 3 Link to comment Share on other sites More sharing options...
MoseySusan Posted February 23, 2022 Share #10 Posted February 23, 2022 Very nice view. Link to comment Share on other sites More sharing options...
Popular Post Zealot Posted February 23, 2022 Author Popular Post Share #11 Posted February 23, 2022 20 minutes ago, Dirtyhip said: This sounds by scary. I am very sad to hear you talk this way. Please do not give up. Sounds like a terrible exascerbation. Are you sure you can't get on a short course of steroids? Seriously, it could be worth it. Get you going again and then get off of them. Tough love here, but i know exactly what this feels like. Steroids suck, but death and giving up is worse. Hugs to you. Many of them. I’m not a quitter. 🤗 2 4 Link to comment Share on other sites More sharing options...
maddmaxx ★ Posted February 23, 2022 Share #12 Posted February 23, 2022 I hope you and your docs get a handle on what this relapse is all about. Get better soon. 1 Link to comment Share on other sites More sharing options...
Kirby Posted February 23, 2022 Share #13 Posted February 23, 2022 I hope the pain diminishes and you and the medical team can figure out how to stop this. We care about you. and hope you feel better. But in the meantime, hope the sky and clouds can help distract. 1 Link to comment Share on other sites More sharing options...
Parsnip Totin Jack ★ Posted February 23, 2022 Share #14 Posted February 23, 2022 I’m sorry to hear this Z. I’m glad you’re in a good place right now and hope the medical pros can fix what’s causing this. Praying hard. 1 Link to comment Share on other sites More sharing options...
petitepedal ★ Posted February 23, 2022 Share #15 Posted February 23, 2022 So sorry you are dealing with this..prayers and virtual hugs going out 1 Link to comment Share on other sites More sharing options...
Ralphie ★ Posted February 23, 2022 Share #16 Posted February 23, 2022 Serenity now. A little outdoor therapy sounds good. 2 Link to comment Share on other sites More sharing options...
Zealot Posted February 23, 2022 Author Share #17 Posted February 23, 2022 3 hours ago, Dirtyhip said: Are you sure you can't get on a short course of steroids? Seriously, it could be worth it. Get you going again and then get off of them. Our modern issues with medical facilities are certainly challenging, to say the least. Sometimes, just getting someone on the phone seems impossible. I will discuss the possibility of a short course of prednisone with them. Waiting on a call back currently. Difficult to think straight when pain levels are high. Thank you for the advice. 😊 1 Link to comment Share on other sites More sharing options...
Dirtyhip Posted February 23, 2022 Share #18 Posted February 23, 2022 8 minutes ago, Zealot said: Our modern issues with medical facilities is certainly challenging, to say the least. Sometimes, just getting someone on the phone seems impossible. I will discuss the possibility of a short course of prednisone with them. Waiting on a call back currently. Difficult to think straight when pain levels are high. Thank you for the advice. 😊 I hate them too but they have worked well for me to jump start myself. It reduces inflammation for and has worked for me. Just an idea to get those legs working again. It bothers me that your care provider is not being responsive. Pain is horrible and I wish we could take that away and make you feel better. 2 Link to comment Share on other sites More sharing options...
Dirtyhip Posted February 23, 2022 Share #19 Posted February 23, 2022 For me it was always a couple days or so on solumedrol via iv, and then an oral taper on prednasone pills. Of course this was for MS during an attack. Active attacking lesions that made me fall down and lose function. 2 Link to comment Share on other sites More sharing options...
Zealot Posted February 23, 2022 Author Share #20 Posted February 23, 2022 4 minutes ago, Dirtyhip said: I hate them too but they have worked well for me to jump start myself. It reduces inflammation for and has worked for me. Just an idea to get those legs working again. It bothers me that your care provider is not being responsive. Pain is horrible and I wish we could take that away and make you feel better. My PCP had suggested prednisone along with the antibiotics during the pneumonia stint. I told her I didn’t want them, and explained why. Might be why she hasn’t suggested them at this point. Truly I’d assumed (hoped) I’d ride this out. But not sure now. Honestly had thoughts of succumbing to a Guillain-Barré like situation earlier today. I remember reading a story back in my military days about a lady who was completely paralyzed by it with 24 hours. Doctors has a tough time dx’ing her and it was a long and difficult recovery. Very scary thought to be completely aware, but trapped inside unable to even communicate. 1 3 Link to comment Share on other sites More sharing options...
Dirtyhip Posted February 23, 2022 Share #21 Posted February 23, 2022 Are you seeing a neuro or a gp? Link to comment Share on other sites More sharing options...
Zealot Posted February 23, 2022 Author Share #22 Posted February 23, 2022 17 minutes ago, Dirtyhip said: Are you seeing a neuro or a gp? I’m seeing my GP. I’ve an appt with my neuro, but it’s a ways out - May. They have me on an “priority list” if someone else cancels. 1 Link to comment Share on other sites More sharing options...
Square Wheels Posted February 23, 2022 Share #23 Posted February 23, 2022 Just now, Zealot said: I’m seeing my GP. I’ve an appt with my neuro, but it’s a ways out - May. They have me on an “priority list” if someone else cancels. Wow, they don't consider this urgent? 2 Link to comment Share on other sites More sharing options...
Zealot Posted February 23, 2022 Author Share #24 Posted February 23, 2022 Just now, Square Wheels said: Wow, they don't consider this urgent? I assume they do, but they’re booked. And seriously, it’s been since 2007 that I last saw anyone for these issues. Link to comment Share on other sites More sharing options...
Square Wheels Posted February 23, 2022 Share #25 Posted February 23, 2022 1 minute ago, Zealot said: I assume they do, but they’re booked. And seriously, it’s been since 2007 that I last saw anyone for these issues. Re-read your first post. I would hope someone would see you now. 2 Link to comment Share on other sites More sharing options...
Bikeguy Posted February 23, 2022 Share #26 Posted February 23, 2022 Prayers for you... 1 Link to comment Share on other sites More sharing options...
Dirtyhip Posted February 23, 2022 Share #27 Posted February 23, 2022 4 minutes ago, Zealot said: I’m seeing my GP. I’ve an appt with my neuro, but it’s a ways out - May. They have me on an “priority list” if someone else cancels. MAY!? This is crazy. Do you have a my chart login? Like, can you chat with your neuro about issues like this. They need to be involved. May is too far out for what you are experiencing. GPs are great, but I am sorry, they are not specialists in this field. This is acute. Link to comment Share on other sites More sharing options...
Dirtyhip Posted February 23, 2022 Share #28 Posted February 23, 2022 check DM, please Link to comment Share on other sites More sharing options...
Zealot Posted February 23, 2022 Author Share #29 Posted February 23, 2022 2 minutes ago, Dirtyhip said: MAY!? This is crazy. Do you have a my chart login? Like, can you chat with your neuro about issues like this. They need to be involved. May is too far out for what you are experiencing. GPs are great, but I am sorry, they are not specialists in this field. This is acute. I have three different my chart accounts. Unfortunately none yet with my neuro. (Wasn’t a thing back then) They sent me the invite to theirs to do exactly what you’re suggesting here, but I have received it yet. I’ve called them three times today to make sure they got my e-mail correct. The last time, they told me to go to the website and just register. I tried, you can’t. Have to have the invite request. I got very frustrated. So, I’ll try again tomorrow. My neuro isn’t close. I originally saw a neurologist is Winchester, which is very close. They eventually referred me to Fairfax/Inova. I tried contacting Winchester first. Cannot get through. Seriously. All you can do is leave phone messages, which I did, but they did not call me back. I even tried a new private neurology clinic here but they want all the notes from the previous stuff. So I called Fairfax. It’s difficult. Honestly, I see it going one of a couple ways: 1. By May Im better and I cancel the appt, 2. It gets worse, or bad enough that I need to visit the emergency room. (I do not want to do that) 3. I get back with my PCP tomorrow and we make some magic happen... Link to comment Share on other sites More sharing options...
Dirtyhip Posted February 24, 2022 Share #30 Posted February 24, 2022 9 minutes ago, Zealot said: I have three different my chart accounts. Unfortunately none yet with my neuro. (Wasn’t a thing back then) They sent me the invite to theirs to do exactly what you’re suggesting here, but I have received it yet. I’ve called them three times today to make sure they got my e-mail correct. The last time, they told me to go to the website and just register. I tried, you can’t. Have to have the invite request. I got very frustrated. So, I’ll try again tomorrow. My neuro isn’t close. I originally saw a neurologist is Winchester, which is very close. They eventually referred me to Fairfax/Inova. I tried contacting Winchester first. Cannot get through. Seriously. All you can do is leave phone messages, which I did, but they did not call me back. I even tried a new private neurology clinic here but they want all the notes from the previous stuff. So I called Fairfax. It’s difficult. Honestly, I see it going one of a couple ways: 1. By May Im better and I cancel the appt, 2. It gets worse, or bad enough that I need to visit the emergency room. (I do not want to do that) 3. I get back with my PCP tomorrow and we make some magic happen... Our medical system seems to be falling apart. I am seeing it here a bit too. Scary. I believe we have docs and nurses aging out as well as people getting sicker and older. The boomer generation is huge and I don't believe we have properly prepared for the increased population of people with issues. If by May you get better, just keep the appt. I think it is very important to see someone regularly with chronic illness. My previous neuro, gosh I love that man, he would see me every 6 months to one year. It was usually just a catch up, as I have been very lucky with my disease progression. We would meet there would be jokes and I felt good, but I still kept the appts. My new doc is even more strict with tests and checking me out. She tests my memory too. Apple, Penny, Table. That was the three words she told me before my last appt many months ago and she tested me on the words and the sequence. I will impress her by remembering it for this time. 1 Link to comment Share on other sites More sharing options...
KrAzY Posted February 24, 2022 Share #31 Posted February 24, 2022 I hope all the pain passes and you get better.. I know a relapse in pain sucks! how much bamboo do y'all have? I like the thunking sound in the wind when a couple tubes hit just right 1 Link to comment Share on other sites More sharing options...
Airehead Posted February 24, 2022 Share #32 Posted February 24, 2022 Offering prayers for you. 1 Link to comment Share on other sites More sharing options...
Bikeguy Posted February 24, 2022 Share #33 Posted February 24, 2022 2 hours ago, Zealot said: 2. It gets worse, or bad enough that I need to visit the emergency room. (I do not want to do that) Long story short... That's how I got in to the hospital of my choice for my pancreatitis back in 2016. (after my local hospital released me, and I still had pancreatitis) I hope things go better for you and scheduling your medical needs. 1 Link to comment Share on other sites More sharing options...
Kirby Posted February 24, 2022 Share #34 Posted February 24, 2022 I hope you can see someone soon to help. I was getting so frustrated just reading your posts. I know you said you don't want to go to the emergency room, but if that turns out to be the right choice for you, please consider it. You are in my prayers. Link to comment Share on other sites More sharing options...
petitepedal ★ Posted February 24, 2022 Share #35 Posted February 24, 2022 Listen to the frog...ER at a hospital might be a good choice..especially if is a decent hospital with a good rep. Or Come to MN and the Mayo Clinic...those Mayo people know how to do medicine..I wish more hospitals and clinics operated that way... 1 Link to comment Share on other sites More sharing options...
shootingstar Posted February 24, 2022 Share #36 Posted February 24, 2022 You might have to wait awhile in ER, Zealot but go... Link to comment Share on other sites More sharing options...
Popular Post Zealot Posted November 30, 2023 Author Popular Post Share #37 Posted November 30, 2023 Well, it seems here I go again. It hit hard and fast today. That last relapse began almost two years ago. If this goes full blown, it will be the quickest between major relapse onset’s I’ve had. That last one remitted late last year. Guess I’ll buckle up for the ride. 9 Link to comment Share on other sites More sharing options...
Dirtyhip Posted November 30, 2023 Share #38 Posted November 30, 2023 Sorry to hear that you are having problems. 1 Link to comment Share on other sites More sharing options...
jsharr ★ Posted November 30, 2023 Share #39 Posted November 30, 2023 20 minutes ago, Zealot said: Well, it seems here I go again. It hit hard and fast today. That last relapse began almost two years ago. If this goes full blown, it will be the quickest between major relapse onset’s I’ve had. That last one remitted late last year. Guess I’ll buckle up for the ride. Sorry to hear this. Praying for you. 1 Link to comment Share on other sites More sharing options...
Kzoo Posted November 30, 2023 Share #40 Posted November 30, 2023 Prayers for you Zman 1 Link to comment Share on other sites More sharing options...
jsharr ★ Posted November 30, 2023 Share #41 Posted November 30, 2023 1 hour ago, Zealot said: Well, it seems here I go again. It hit hard and fast today. That last relapse began almost two years ago. If this goes full blown, it will be the quickest between major relapse onset’s I’ve had. That last one remitted late last year. Guess I’ll buckle up for the ride. I am really struggling with what to pray for. If you could give us anything specific it would help. Right now I am praying for healing, strength and peace for you. 1 Link to comment Share on other sites More sharing options...
Airehead Posted November 30, 2023 Share #42 Posted November 30, 2023 1 hour ago, Zealot said: Well, it seems here I go again. It hit hard and fast today. That last relapse began almost two years ago. If this goes full blown, it will be the quickest between major relapse onset’s I’ve had. That last one remitted late last year. Guess I’ll buckle up for the ride. Prayers for you. 1 Link to comment Share on other sites More sharing options...
petitepedal ★ Posted December 1, 2023 Share #43 Posted December 1, 2023 Sending both you and MrsZ hugs and prayers 1 Link to comment Share on other sites More sharing options...
KrAzY Posted December 1, 2023 Share #44 Posted December 1, 2023 damit it.. I'm sorry to hear this, I hope it works itself out quickly and you can get back to normal life. 1 Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now