Demylinating Sensorimotor Neuropathy vs./ or and Polyradiculopathy

Posted by Goaway @nemo1, Feb 28 6:39am

Are these overlapping or independent and of the same disease?

Does demyelination occur in neuropathy?

The nerve conduction studies reports that were done a year apart from each other by different doctors. Each showed this.

The DSN was taken in 6/2022 the PR was done 4/2023.

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@minfromtexas

Yikes...I went to the article and my eyes crossed! My overriding question is: What can we expect in the future due to the demyelination? All I get from my neurologist are vague non answers which makes me conclude that they don't know for sure and all the tests that they perform are being done to track our decline. Ugh. Anyone out there get answers about what to expect? I'd love to hear from you.

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Hi @minfromtexas, My guess for the vague answers is they really don't have the answer. Here are a couple of references that are hopefully a little easier to understand on demyelination.

--- Demyelinating disease: What can you do about it?: https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/expert-answers/demyelinating-disease/faq-20058521
--- Demyelination: What Is It and Why Does It Happen?: https://www.healthline.com/health/multiple-sclerosis/demyelination.

My own personal opinion on progression is that it's better for our overall health to take it day by day, eat healthier and keep moving doing what you find brings you joy.

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@minfromtexas

Yikes...I went to the article and my eyes crossed! My overriding question is: What can we expect in the future due to the demyelination? All I get from my neurologist are vague non answers which makes me conclude that they don't know for sure and all the tests that they perform are being done to track our decline. Ugh. Anyone out there get answers about what to expect? I'd love to hear from you.

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I am getting updated testing by a new neurologist due to CNS/PNS decline and nerve dysfunction impacting my mobility, sensory systems, and autonomic nervous system. My thoughts are they really do not know or they can’t do much other than treat symptoms unsuccessfully with strong medications that cause terrible side effects. I do think that toxins in our environment, products and food supply are damaging our brain/spinal cord, nervous systems, brain chemistry and quality of life.

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@minfromtexas

Yikes...I went to the article and my eyes crossed! My overriding question is: What can we expect in the future due to the demyelination? All I get from my neurologist are vague non answers which makes me conclude that they don't know for sure and all the tests that they perform are being done to track our decline. Ugh. Anyone out there get answers about what to expect? I'd love to hear from you.

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@minfromtexas There is so much out there on sensorymotor polyneuropathy but nothing specific about demyelination. I did find this, though.
https://medlineplus.gov/ency/article/000750.htm#:~:text=Sensorimotor%20polyneuropathy%20is%20a%20bodywide,nerve%20coverings%20(myelin%20sheath).
I, too, have a demyelination disease. It’s kept in check with prednisone and biologic infusions.
My doctor doesn’t really know what’s going to happen either!
So I guess we keep on keeping on!

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@johnbishop

Hi @minfromtexas, My guess for the vague answers is they really don't have the answer. Here are a couple of references that are hopefully a little easier to understand on demyelination.

--- Demyelinating disease: What can you do about it?: https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/expert-answers/demyelinating-disease/faq-20058521
--- Demyelination: What Is It and Why Does It Happen?: https://www.healthline.com/health/multiple-sclerosis/demyelination.

My own personal opinion on progression is that it's better for our overall health to take it day by day, eat healthier and keep moving doing what you find brings you joy.

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Yep...I totally agree with your conclusion. The thing that has helped me the most has been daily exercise including weights and dance moves. If nothing else, going to the group classes keeps me engaged and laughing. As for the doctors...they all stay in their own silos, looking at only symptoms relating to their specialty. If only they'd consult with one another, but alas, that falls to the patient to manage. Anyway...thank you for your input and the links.

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@dlydailyhope

I think my gastroenterologist will recommend I have my gallbladder out since it is not working properly or sending enough bile to my small intestines to digest food (causes pain near my liver and could cause infection/inflammation due to trapped bile). I already had blood work, an endoscopy and ultrasound and the HIDA scan seems to confirm my gallbladder function disorder (which I believe is tied to autonomic dysfunction).

It is amazing how many problems can be caused by your CNS/PNS, especially if there is injury to the cervical spine/cord due to vertebral disk/joint degeneration. It makes sense that your body will have problems if your brain and body can’t communicate or coordinate well.

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Hi Daily Hope,

I hope you are feeling some relief today.

I am more hopeful and wanted to share! I was so excited when I stumbled upon an old (2004) MRI with ‘limited view’ of the cervical spine!

Now I have more information for my doctor, albeit old. It shows there was something happening, not including several falls later…

This was about a year after I had a bad fall, then 4 subsequent falls a number of years later.

Showing disc bulging at C5-C6 and C6-C7 with a hemangioma of bone of C4. This with the nerve studies should be useful.

I read symptomatic hemangiomas ‘can’ cause severe neurological problems, while others are benign in nature. So, that was after a very brief Google.

I am printing the report. I’ll show the doctor with confidence request updated imaging. I am breathing a little easier about the appointment. I will be ready.

Is a epidurals effect immediate?

About two weeks ago I tried a light stretch (yoga) that was to help elongate the spine and neck. It was hurting after that. I had some weird sensations.

It’s decided. New movements will have to wait until I get back to physical therapy. They can show and tell me what moves will be okay for my spine and balance issues with new more thorough information.

If my primary does not order complete radiology, I will request again with neurologist for a complete picture.
I have to remember to request a referral for the specialist you suggested a consult with, orthopedic surgeon.

Radiology will take weeks if not a month. Maybe i can bite the bullet and plan for that specialist in advance of radiology. I’m sure he/she will also be scheduled out. I’ll try to coordinate all exams.

It’s amazing how we have to be steps ahead to get proper treatment. I’m going to see if my primary can coordinate my care. He’s the pro!

Have a great day. Hope it’s sunny where you are. It’s rainy and cool now. It’s supposed to warm up this week.
Spring is coming!

I love crocuses. When they bloom I know spring is around the corner.

💛

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@nemo1

Hi Daily Hope,

I hope you are feeling some relief today.

I am more hopeful and wanted to share! I was so excited when I stumbled upon an old (2004) MRI with ‘limited view’ of the cervical spine!

Now I have more information for my doctor, albeit old. It shows there was something happening, not including several falls later…

This was about a year after I had a bad fall, then 4 subsequent falls a number of years later.

Showing disc bulging at C5-C6 and C6-C7 with a hemangioma of bone of C4. This with the nerve studies should be useful.

I read symptomatic hemangiomas ‘can’ cause severe neurological problems, while others are benign in nature. So, that was after a very brief Google.

I am printing the report. I’ll show the doctor with confidence request updated imaging. I am breathing a little easier about the appointment. I will be ready.

Is a epidurals effect immediate?

About two weeks ago I tried a light stretch (yoga) that was to help elongate the spine and neck. It was hurting after that. I had some weird sensations.

It’s decided. New movements will have to wait until I get back to physical therapy. They can show and tell me what moves will be okay for my spine and balance issues with new more thorough information.

If my primary does not order complete radiology, I will request again with neurologist for a complete picture.
I have to remember to request a referral for the specialist you suggested a consult with, orthopedic surgeon.

Radiology will take weeks if not a month. Maybe i can bite the bullet and plan for that specialist in advance of radiology. I’m sure he/she will also be scheduled out. I’ll try to coordinate all exams.

It’s amazing how we have to be steps ahead to get proper treatment. I’m going to see if my primary can coordinate my care. He’s the pro!

Have a great day. Hope it’s sunny where you are. It’s rainy and cool now. It’s supposed to warm up this week.
Spring is coming!

I love crocuses. When they bloom I know spring is around the corner.

💛

Jump to this post

My bulbs are starting to bloom in Rhode Island! 🙂

So glad you are ready for next steps. You may get a more urgent appointment scheduled with the orthopedic spine specialist if you tell them you need a speedy assessment of potential cervical myelopathy. They should see this as an emergency and squeeze you into the schedule as a high priority.

Good luck!

REPLY
@nemo1

Hi Daily Hope,

I hope you are feeling some relief today.

I am more hopeful and wanted to share! I was so excited when I stumbled upon an old (2004) MRI with ‘limited view’ of the cervical spine!

Now I have more information for my doctor, albeit old. It shows there was something happening, not including several falls later…

This was about a year after I had a bad fall, then 4 subsequent falls a number of years later.

Showing disc bulging at C5-C6 and C6-C7 with a hemangioma of bone of C4. This with the nerve studies should be useful.

I read symptomatic hemangiomas ‘can’ cause severe neurological problems, while others are benign in nature. So, that was after a very brief Google.

I am printing the report. I’ll show the doctor with confidence request updated imaging. I am breathing a little easier about the appointment. I will be ready.

Is a epidurals effect immediate?

About two weeks ago I tried a light stretch (yoga) that was to help elongate the spine and neck. It was hurting after that. I had some weird sensations.

It’s decided. New movements will have to wait until I get back to physical therapy. They can show and tell me what moves will be okay for my spine and balance issues with new more thorough information.

If my primary does not order complete radiology, I will request again with neurologist for a complete picture.
I have to remember to request a referral for the specialist you suggested a consult with, orthopedic surgeon.

Radiology will take weeks if not a month. Maybe i can bite the bullet and plan for that specialist in advance of radiology. I’m sure he/she will also be scheduled out. I’ll try to coordinate all exams.

It’s amazing how we have to be steps ahead to get proper treatment. I’m going to see if my primary can coordinate my care. He’s the pro!

Have a great day. Hope it’s sunny where you are. It’s rainy and cool now. It’s supposed to warm up this week.
Spring is coming!

I love crocuses. When they bloom I know spring is around the corner.

💛

Jump to this post

P.S. The orthopedic spine specialist may be able to expedite getting you updated MRIs following your 1st appointment.

REPLY
@dlydailyhope

My bulbs are starting to bloom in Rhode Island! 🙂

So glad you are ready for next steps. You may get a more urgent appointment scheduled with the orthopedic spine specialist if you tell them you need a speedy assessment of potential cervical myelopathy. They should see this as an emergency and squeeze you into the schedule as a high priority.

Good luck!

Jump to this post

Just took a screen shot of this post so I’ll remember…:)

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@minfromtexas

Yikes...I went to the article and my eyes crossed! My overriding question is: What can we expect in the future due to the demyelination? All I get from my neurologist are vague non answers which makes me conclude that they don't know for sure and all the tests that they perform are being done to track our decline. Ugh. Anyone out there get answers about what to expect? I'd love to hear from you.

Jump to this post

Nope, same here, all suggestions regarding meds,I’ve already done with no positive results.
Suggestions made for new med, very expensive and not approved by my Rx plan.
Possibly new med coming out this year for CIDP, which is an infusion, and I’ll get a call when it’s available.
So right now I’m at an impasse, and can’t even get an appt at Mayo Clinic in Arizona.
Was told no new appts available in neurology dept.
So now what?
That was my last hope for answers- was told to try back in several months,to see if there are appts available.

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