Health Update

[Zealot]

Well, since all this started, I just got a working diagnosis from Hopkins. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). It’s related to Guillain-Barré syndrome. But more rare. It is an autoimmune demyelinating disease. It appears I have the Recurrent form (relapsing/remitting).

Next stop, the Neuromuscular Clinic at Hopkins.

I am hopeful now because I can focus on how to treat it. 

Peace.

[2Far]

Yeah. "Good" news? Dunno, at least you can now get a focus on the treatment effort and banish (some of) the "what-ifs" from your mental orbit.

Good luck & God bless.

 

[petitepedal ★]

Have a diagnosis in itself  can bring some peace to all the  "what ifs" running though your head.

Best of luck...hugs and prayer for the next step.

[Scrapr ★]

I can't find the prayer emoji but that is what should be here

[Kirby ★]

Hope now that they have identified something, they can more productively treat it or help with relieving the symptoms.  And also good to know you are at a top tier medical facility.

[BuffJim]

🙏🙏🙏

[Zealot]

1 hour ago, petitepedal said:

a diagnosis in itself  can bring some peace to all the  "what ifs" running though your head.

53 minutes ago, Kirby said:

they can more productively treat it or help with relieving the symptoms.  

 

Absolutely.  

[jsharr ★]

Just knowing seems like it would relieve some of the anxiety and stress.

I hope you come up with a treatment plan that works for you.

Peace and Strength and Healing to you.

[Zealot]

17 minutes ago, jsharr said:

hope you come up with a treatment plan that works for you.

Currently, riding my bike is doing wonders!  😊 

[bikeman564™]

prayers & vibes sent.

[Airehead ★]

Continued prayers. It is a good place for treatment and advice. 

[shootingstar]

Keep us posted Zealot....!

[Zealot]

Well, this relapse decided it wasn’t complete. It came back in force over the weekend. I guess it likes me too much to go away.  Today has been a real struggle.  I managed to stay at work today, but I had cancel a couple things that involves walking around. I couldn’t do it. I fell in my office. Got stuck on a stairway here at home. Very thankful for handrails and enough hand strength to hold them!

I did contact JH to see if they can move me up. If they want to do a nerve biopsy, which has been indicated, then I’d sure like them to do it when the flare is in full swing. 

Fun times. 

[Airehead ★]

Oh dear, the unpredictability of this must be frustrating. 

[Zealot]

25 minutes ago, Airehead said:

Oh dear, the unpredictability of this must be frustrating. 

It is, yes. Just got a message from neuromuscular who said they’d try to move up the appt. 

I have been appreciative of how well the folks at JH have treated me and my wife and how well they respond to inquiries. Honestly, they truly are top notch. 

[Kirby ★]

Sorry you're having to deal with this, but glad your medical team is being helpful.

[petitepedal ★]

Sending out more prayers

[MickinMD ★]

On 9/22/2022 at 3:39 PM, Zealot said:

Well, since all this started, I just got a working diagnosis from Hopkins. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). It’s related to Guillain-Barré syndrome. But more rare. It is an autoimmune demyelinating disease. It appears I have the Recurrent form (relapsing/remitting).

Next stop, the Neuromuscular Clinic at Hopkins.

I am hopeful now because I can focus on how to treat it. 

Peace.

I'm both sad and happy about this news, the happy part being the identification of the disease!  Hopefully it can be controlled so the nerves don't get too unwrapped.

[Dottleshead ★]

My thoughts are with you Zealot. Be strong and full of love.

[Dirtyhip]

I admire your resolve. Keep up the good.fight.  you are in my thoughts lately.

[Parr8hed]

9 hours ago, Dirtyhip said:

I admire your resolve. Keep up the good.fight.  you are in my thoughts lately.

Yes, this.  100%.  

[Zealot]

13 hours ago, MickinMD said:

I'm both sad and happy about this news, the happy part being the identification of the disease!  Hopefully it can be controlled so the nerves don't get too unwrapped.

I’m a bit reluctant in expressing too much emotion either way at this point. 

The dx is ‘working’.  The world of autoimmune/neuro/neuromuscular is often tenuous... 😉 

But I agree, getting control prior to any type of permanent damage is essential. 

 

[Zealot]

JH called me this afternoon ad moved my appt from Feb 20, 23 to Dec 5, 22.

Am feeling thankful right now.  Back on May 5, I got my first referral to JH Rheumatology and they initially scheduled me for Sep 29. After consulting with them, they moved the appt to Jun 21. Then referred me to Neurology and got me in on July 25. 

Now again they are getting me into Neuromuscular by Dec. Each time I’ve reached out to them they’ve been super responsive. And seriously, I not seen doctors be more thorough. 

Its usually an all day affair when I go, but  it’s worth the drive and the time. 

[Zealot]

18 hours ago, Dirtyhip said:

I admire your resolve. Keep up the good.fight.  you are in my thoughts lately.

 

8 hours ago, Parr8hed said:

Yes, this.  100%.  

Thanks. Sometimes I think ‘resolve’ is like ‘courage’ in the old saying “you don’t really know you have it until it’s all that’s left.” 😊 

I committed to my wife to follow this one through this time. Ima tryin’... 

[Dirtyhip]

4 hours ago, Zealot said:

 

Thanks. Sometimes I think ‘resolve’ is like ‘courage’ in the old saying “you don’t really know you have it until it’s all that’s left.” 😊 

I committed to my wife to follow this one through this time. Ima tryin’... 

I like the word resolve.  Not everyone uses it.  Fancy words that make me appear smart, but I aint.  LOL

[Zealot]

12 hours ago, Dirtyhip said:

I like the word resolve.  Not everyone uses it.  Fancy words that make me appear smart, but I aint.  LOL

It is an excellent word. And you do not need to ‘appear’ intelligent. You ‘are’ intelligent. Do not discredit yourself.   😊 

[Dirtyhip]

54 minutes ago, Zealot said:

It is an excellent word. And you do not need to ‘appear’ intelligent. You ‘are’ intelligent. Do not discredit yourself.   😊 

Just a joke.    Sometimes, I try to appear funny. 

[jsharr ★]

11 minutes ago, Dirtyhip said:

Just a joke.    Sometimes, I try to appear funny. 

Should resolve to be funny

[jsharr ★]

Peace and Strength Zealot.  Uncertainty sucks.  

[Zealot]

3 hours ago, Dirtyhip said:

Just a joke.    Sometimes, I try to appear funny. 

I thought maybe you were being facetious. But on the off chance you weren’t, I wanted to encourage you to recognize your intellect . 😊 

 

[Rattlecan ★]

Thoughts are with you Z. Stay strong.

[Zealot]

3 hours ago, jsharr said:

Peace and Strength Zealot.  Uncertainty sucks.  

Thanks. It’s been a very long time of uncertainty. 18 years of it. 

[Zealot]

Got notified Wednesday that there was a cancellation. So, I am getting in on Monday to see neuromuscular. 

Pretty much my entire year’s worth of PTO has been used for medical this year.  

[Airehead ★]

36 minutes ago, Zealot said:

Got notified Wednesday that there was a cancellation. So, I am getting in on Monday to see neuromuscular. 

Pretty much my entire year’s worth of PTO has been used for medical this year.  

Cancellation is good news for you. Maybe answers. 

[Dirtyhip]

1 hour ago, Zealot said:

Pretty much my entire year’s worth of PTO has been used for medical this year.  

I know that feeling.  In the last year, I had so much medical stuff, I had to dip into vacation.   I've learned that if I don't feel well, I call in.  There is no point in dragging in, in order to be a hero.  Companies would replace us in a hot minute and we would be forgotten quickly.  My health is priority one.

[Longjohn ★]

1 hour ago, Airehead said:

Pretty much my entire year’s worth of PTO has been used for medical this year.  

 

4 minutes ago, Dirtyhip said:

know that feeling.  In the last year, I had so much medical stuff, I had to dip into vacation

I think the forum is what keeps the specialists boat payments going. I thought cycling was supposed to keep us healthy? On the other hand I had two years of not riding when I was caring for Esther. That’s when my body fell apart. Once I got back into riding I’ve been doing much better.

[Zealot]

1 hour ago, Airehead said:

Cancellation is good news for you. Maybe answers. 

I am pretty sure they’ll want to do a couple more tests- lumbar puncture and  nerve biopsy- based on the information that neurology gave me at last visit. Which will mean more appointments... 😉I went into the wrong line of work!  😂 

5 minutes ago, Dirtyhip said:

I know that feeling.  In the last year, I had so much medical stuff, I had to dip into vacation.   I've learned that if I don't feel well, I call in.  There is no point in dragging in, in order to be a hero.  Companies would replace us in a hot minute and we would be forgotten quickly.  My health is priority one.

Indeed!  I was initially trying to work part day and make the appointments either early or late. But since all my specialists are in the DC area and now Baltimore, I just take the day. I do work extra hours though attempting to stay on top of some of my projects. It’s kind of a balancing act. But not having any vacation this year was a bit of a bummer. But the goal is to see the process through and get the answers ... 😊 

[Zealot]

8 minutes ago, Longjohn said:

 

I think the forum is what keeps the specialists boat payments going. I thought cycling was supposed to keep us healthy? On the other hand I had two years of not riding when I was caring for Esther. That’s when my body fell apart. Once I got back into riding I’ve been doing much better.

I think its the mean age of the forum participants that keeps that ship sailing...  We’re not getting any younger. 

[Dirtyhip]

8 minutes ago, Zealot said:

I am pretty sure they’ll want to do a couple more tests- lumbar puncture and  nerve biopsy- based on the information that neurology gave me at last visit. Which will mean more appointments... 😉I went into the wrong line of work!  😂 

Indeed!  I was initially trying to work part day and make the appointments either early or late. But since all my specialists are in the DC area and now Baltimore, I just take the day. I do work extra hours though attempting to stay on top of some of my projects. It’s kind of a balancing act. But not having any vacation this year was a bit of a bummer. But the goal is to see the process through and get the answers ... 😊 

One of the people I see is out of my town, so it is an entire day off for a 20 minute appointment.  There is a new neuro in my town now.  My appt is booked, but it was a 13 month wait to get in.  I have one more appointment with my out of town doc.  I hope the new one works out for me.  It's a big risk changing, cause getting back in with anyone these days is a horrible wait.   Unless you have some acute condition, you are gonna wait.  In an emergency situation, I believe you will get in faster.  My guess.  Routine stuff, you wait and wait.  I really do like the mychart stuff these days.  You can message directly with your doctors.  I do utilize that service.

[Dirtyhip]

3 minutes ago, Zealot said:

I think its the mean age of the forum participants that keeps that ship sailing...  We’re not getting any younger. 

Well, I have been seeing specialists since my 30's.  It has been a long time with this disease.  Almost 20 years now.

[Zealot]

4 minutes ago, Dirtyhip said:

One of the people I see is out of my town, so it is an entire day off for a 20 minute appointment.  There is a new neuro in my town now.  My appt is booked, but it was a 13 month wait to get in.  I have one more appointment with my out of town doc.  I hope the new one works out for me.  It's a big risk changing, cause getting back in with anyone these days is a horrible wait.   Unless you have some acute condition, you are gonna wait.  In an emergency situation, I believe you will get in faster.  My guess.  Routine stuff, you wait and wait.  I really do like the mychart stuff these days.  You can message directly with your doctors.  I do utilize that service.

Yeah, I recall you mentioning that about the new neuro. I hope that works out well for you.   

I feel pretty thankful for how things have worked out here. Even with appts that have been scheduled far out, each time Ive been able to get them moved. And yes, I agree, MyChart is exceptional in this regard. I’ve had many conversations with the neurologists and the rheumatologist and they’ve been exceptional to work with.  😊 

[Longjohn ★]

12 minutes ago, Zealot said:

I think its the mean age of the forum participants that keeps that ship sailing...  We’re not getting any younger. 

Who are you calling mean? I’m not mean.   Now get off my lawn.

[Zealot]

31 minutes ago, Dirtyhip said:

Well, I have been seeing specialists since my 30's.  It has been a long time with this disease.  Almost 20 years now.

I know. I was 39 in 2004 when this first began for me. 18 years now. But unlike you, I gave up seeing specialists in 2007 as I was really tired of dealing with all this. It had gone into remission and I started training for the Mt W ride. That was much more fun. 😊 

Ive had multiple relapses over the years, but nothing that lasted more than a month, so I rode them out. 

But this time, it was much more significant and lasted a long time. So, with my wife’s insistence, I started the process again. 

Back in 2007, my neurologist in Fairfax wanted to refer me to John’s Hopkins or to NIH. I was actually working at NIH then. But I told him no. I was tired of spending time and money. So here’s the irony, I’m at Johns Hopkins spending time and money now.... 😉 

Life...

[bikeman564™]

7 minutes ago, Zealot said:

So, with my wife’s insistence, I started the process again. 

gotta listen to the people who care

Prayers & vibes all works out

[Kzoo]

Praying for you Z Man.  You got this.

And great to hear that you can get in earlier.

 

[MickinMD ★]

1 hour ago, Longjohn said:

 

I think the forum is what keeps the specialists boat payments going. I thought cycling was supposed to keep us healthy? On the other hand I had two years of not riding when I was caring for Esther. That’s when my body fell apart. Once I got back into riding I’ve been doing much better.

My blood sugar numbers have been up since not exercising by riding or doing much long walking due to knee pain beginning in June - which has healed enough to begin walking Jake 2-3 miles again.  I got my results online from Wed. blood test and my A1C (blood glucose) is up to 9.9 vs the under 7 desired and 8.5 tolerated for 70's and older folks - mostly due to running high overnight. 

I'm seeing my retiring PCP for the last time on Thursday of next week and, as we talked about 3 months ago, I'm going to have him refer me to an endocrinologist (diabetes specialist) as well as hand me off to another doctor in his office.

[Longjohn ★]

8 minutes ago, MickinMD said:

My blood sugar numbers have been up since not exercising by riding or doing much long walking

Dig out that new girl’s bike you bought and pump up the tires and start riding. If your seat is high enough it won’t hurt your knees.