1. < Neuropathy

Nerve biopsy test: Is it done by a neurologist or rheumatologist?

Posted by maryflorida @maryflorida, Aug 4, 2020

What kind of doctor do I see for the nerve biopsy test? My PCP sent me to a rheumatologist for a diagnosis. She feels it is fibromyalgia but prior doctor in Wash. state said it is neuropathy. She won't arrange for the biopsy. Which kind of doctor can finally give me a diagnosis or is she right? All she is offering is amitriptyline for pain. I do take norco too, but my PCP would like me to get off that. I need advice.

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robyn | @boltz7555 | Nov 8, 2021
In reply to @hearttoheart1 "Hi all Hearttoheart here I have benn keeping you updated on Michael’s pro dress noe that..." + (show)
@hearttoheart1

Hi all
Hearttoheart here
I have benn keeping you updated on Michael’s pro dress noe that he has been diagnosed with stage 1V oesophageal cancer
He is due to start his chemo next week
So unfortunate is he that he has developed a pressure sore on his bottom
He is wheelchair bound, .and in his 35 years of taking the greatest care of himself ,this has happened now
The nurse calls daily to change the dressing
I am trying to provide the best nutrients for him,but due to his lack of mobility, lack of appetite and weight loss ,the healing is proving so slow and he is more upset about this that the cancer treatment that lies ahead
All so sad
Keep him in your thoughts and prayers🙏😔

Jump to this post

@hearttoheart1 Praying for you and Michael and sending positive, healing energy your way!

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hearttoheart1 | @hearttoheart1 | Nov 9, 2021

Thank you so much for your support,prayers and kind words
I meant to reply so many times,but last week I felt I was in limbo waiting for the 8th to arrive
And fearful it might not happen maybe due to infection
But it did take place yesterday.
The chemo through his port and has a wee pouch around his waist .the nurse will call tomorrow at 12.30 to unhook it.
On the 16th he is due to give bloods and cycle 2of the chemo treatment will begin on the 22nd
My fear was that I might not be able to look after him properly here at home, but that is not the case
There is help for me and Michael around the clock. Every day .so reassuring,I didn’t realise.
The nurse dealing with the pressure sore calls every day , it is healing very slowly ,it is a very clean wound,so I’m so pleased to have her call,and have her expertise in all things cancer related
Too early yet for nausea ,fatigue or sickness,but I am really dealing with each day at a time.
He is badly failed, and thin but is so positive.
As the tube is still in his throat I am still blitzing his food
I took your advice , Lori,and not too concerned about the nutritional aspect ,I just got to get the food into him and make it appetising, but still no great appetite
My daily 5k walk is gone
I don’t think it would do me good at the moment as I need to be at hand, but I won’t say never
I know how it was my lifeline when I had the depression and anxiety
Your support means so much
Thank you
Pleas God Michael will keep well
No cure….😔 but ,treatable I can deal with
Much love xx

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2 replies
hearttoheart1 | @hearttoheart1 | Nov 11, 2021
In reply to @loribmt "Good morning, Heart. Pressure sores are nasty things. No matter how cautious and attentive we were,..." + (show)
@loribmt

Good morning, Heart. Pressure sores are nasty things. No matter how cautious and attentive we were, my mom would occasionally get them too. I’m sorry Michael is going through that along with facing everything else. It’s good there’s a nurse coming daily to change the dressing and keeping an eye on the area.

Are there special pads or anything he’s tried, like sheep’s wool or the foam egg crate padding? I know he’s been wheelchair bound for 35 years since his accident, so he’s probably had a lot of experience with what works best. He isn’t as mobile as he once was and I’m sure this is creating a new challenge.

What is he able to eat? It has to be really difficult for you to find foods he can swallow and also sound palatable to him. Can he tolerate protein shakes? When undergoing my cancer treatments the hospital dietician gave me protein powder that could be stirred into almost anything. Even mashed potatoes to give me more protein. I couldn’t really taste anything. I know you’re trying to make sure the foods are nutritional. But from experience, when I couldn’t eat much and nothing sounded appetizing my nutritionist told me to eat ANYTHING just for the calorie content. She didn’t care what it was. Just get calories in! Of course protein was encouraged. But if he can eat ice cream, or smoothies with veg and protein…then do it. 🙂

When Michael starts chemo, he may further lose his appetite and feel nauseated. His oncology team should be giving him anti nausea a drugs with this. At home, ginger candy works, also there are hard candies on the market for pregnant women. Queasy Drops work fairly well.
There are great cook books and videos online about cooking for chemo patients. Sometimes little tricks can make food tasty during chemo.

Keep us posted! We’re all pulling for Michael…and you! Prayers and lots of positive thoughts for both of you. Sending love and hugs. 🙏

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Hi
Just reading over your message
The pressure sore is so slow to heal
When you mentioned”sheep’s wool” can you be more scecific please?
Really anxious to help him along,

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Nov 11, 2021
In reply to @hearttoheart1 "Hi Just reading over your message The pressure sore is so slow to heal When you..." + (show)
@hearttoheart1

Hi
Just reading over your message
The pressure sore is so slow to heal
When you mentioned”sheep’s wool” can you be more scecific please?
Really anxious to help him along,

Jump to this post

Hi, the sheep’s wool is a fleece padding. Lamb skin? I found an example on Amazon but I’m not able to post it. Do a search on Amazon for ‘Sheepskin for bedsores’ and you’ll see photos of the fleece or sometimes they’re synthetic fabrics. But they provide a nice level of cushioning under a bedridden patient.

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Mentor
Lori, Volunteer Mentor | @loribmt | Nov 11, 2021
In reply to @hearttoheart1 "Thank you so much for your support,prayers and kind words I meant to reply so many..." + (show)
@hearttoheart1

Thank you so much for your support,prayers and kind words
I meant to reply so many times,but last week I felt I was in limbo waiting for the 8th to arrive
And fearful it might not happen maybe due to infection
But it did take place yesterday.
The chemo through his port and has a wee pouch around his waist .the nurse will call tomorrow at 12.30 to unhook it.
On the 16th he is due to give bloods and cycle 2of the chemo treatment will begin on the 22nd
My fear was that I might not be able to look after him properly here at home, but that is not the case
There is help for me and Michael around the clock. Every day .so reassuring,I didn’t realise.
The nurse dealing with the pressure sore calls every day , it is healing very slowly ,it is a very clean wound,so I’m so pleased to have her call,and have her expertise in all things cancer related
Too early yet for nausea ,fatigue or sickness,but I am really dealing with each day at a time.
He is badly failed, and thin but is so positive.
As the tube is still in his throat I am still blitzing his food
I took your advice , Lori,and not too concerned about the nutritional aspect ,I just got to get the food into him and make it appetising, but still no great appetite
My daily 5k walk is gone
I don’t think it would do me good at the moment as I need to be at hand, but I won’t say never
I know how it was my lifeline when I had the depression and anxiety
Your support means so much
Thank you
Pleas God Michael will keep well
No cure….😔 but ,treatable I can deal with
Much love xx

Jump to this post

What a relief that Michael is getting in-home care around the clock! Oh my goodness, that’s amazing. That takes a huge level of anxiety off your shoulders, my dear.

His positive attitude is exemplary and I think it helps to keep you elevated too. But don’t forget to take some time for yourself. Even if it’s a 5 minute walk and not your usual 5k. A head clearing-nature bathing is so important for your health.

For Michael’s food, have you found any protein supplements you can add to his blitzed meals? I know in the US there are nutritional, high protein products like Ensure which taste, um, ok. Haha. I grew to hate them. But the chocolate was tolerable. They’re bottles of protein drinks/shakes. But there are protein powders available too that are added to foods to give that all important protein boost when eating is limited.

Does Michael have a dietician or nutritionist assigned to him? You could ask for some advice just to give you some more tools for keeping up his calories.

You’ve got this, gurl! I’m so amazed with your tenacity to rise to each new bump in the road. Prayers and thoughts of strength and courage for you both. ☺️

REPLY
athenalee | @athenalee | Nov 11, 2021
In reply to @hearttoheart1 "Thank you so much for your support,prayers and kind words I meant to reply so many..." + (show)
@hearttoheart1

Thank you so much for your support,prayers and kind words
I meant to reply so many times,but last week I felt I was in limbo waiting for the 8th to arrive
And fearful it might not happen maybe due to infection
But it did take place yesterday.
The chemo through his port and has a wee pouch around his waist .the nurse will call tomorrow at 12.30 to unhook it.
On the 16th he is due to give bloods and cycle 2of the chemo treatment will begin on the 22nd
My fear was that I might not be able to look after him properly here at home, but that is not the case
There is help for me and Michael around the clock. Every day .so reassuring,I didn’t realise.
The nurse dealing with the pressure sore calls every day , it is healing very slowly ,it is a very clean wound,so I’m so pleased to have her call,and have her expertise in all things cancer related
Too early yet for nausea ,fatigue or sickness,but I am really dealing with each day at a time.
He is badly failed, and thin but is so positive.
As the tube is still in his throat I am still blitzing his food
I took your advice , Lori,and not too concerned about the nutritional aspect ,I just got to get the food into him and make it appetising, but still no great appetite
My daily 5k walk is gone
I don’t think it would do me good at the moment as I need to be at hand, but I won’t say never
I know how it was my lifeline when I had the depression and anxiety
Your support means so much
Thank you
Pleas God Michael will keep well
No cure….😔 but ,treatable I can deal with
Much love xx

Jump to this post

We’ll all be thinking about Michael and sending positive healing thoughts!

When I was in the hospital after a liver transplant, I was on a feeding tube for a month and a week. I was sent home with the feeding tube as I was still not getting enough protein. I started using Orgain Superfoods and protein powders when I was home. They’re all natural and made from real food. I was off the feeding tube in a week.

Stay positive!

REPLY
larrymc | @larrymc | Dec 6, 2021

My Neurologist at Mayo scheduled me for a Sural nerve biopsy, which was a minor surgery in which they removed a section of the sural nerve in my left leg. This was to determine the extent of damage to my nerves. Before the surgery, the surgeon informed me that the left side of my left foot would always be numb no matter if any treatments cured the rest of my CIDP. I agreed to surgery because I wanted to know for sure what kind of damage was already done to my nerves. My condition is a combination of Anti-mag peripheral neuropathy and CIDP. I wouldn't hesitate getting the surgery again, but of course that nerve is already gone in my left leg!

REPLY
1 reply
hearttoheart1 | @hearttoheart1 | Dec 6, 2021

Hello
It is all over for Michael
He died on Friday,3rd December
Buried today
The stage4oesophageal cancer spread so rapidlythrough his upper body
I’m heartbroken
I know you have been keeping him and me in your prayers
Thank you all
Don’t know what I’ll do without him
In a wheelchair for 35years
Cancer took him in the end😔🙏
God bless and take care of him now

REPLY
2 replies
total99 | @total99 | Dec 7, 2021
In reply to @larrymc "My Neurologist at Mayo scheduled me for a Sural nerve biopsy, which was a minor surgery..." + (show)
@larrymc

My Neurologist at Mayo scheduled me for a Sural nerve biopsy, which was a minor surgery in which they removed a section of the sural nerve in my left leg. This was to determine the extent of damage to my nerves. Before the surgery, the surgeon informed me that the left side of my left foot would always be numb no matter if any treatments cured the rest of my CIDP. I agreed to surgery because I wanted to know for sure what kind of damage was already done to my nerves. My condition is a combination of Anti-mag peripheral neuropathy and CIDP. I wouldn't hesitate getting the surgery again, but of course that nerve is already gone in my left leg!

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What is CIPD?

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