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Zealot
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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.

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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! 

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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.

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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.

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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.

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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. 😊 

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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.

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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. 

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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.

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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...

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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.  :D

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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.

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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.

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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...

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