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Old 12-31-2020, 06:42 PM #11
Kitt Kitt is offline
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Originally Posted by suzyt View Post
Appreciate all your comments thanks. Won’t be able to see the Neurologist until late January. Will update then, in the meantime trying to not panic and get depressed. Would love to hear from anyone who is experiencing CMT symptoms and how they have managed.
Wait and see what you find out at the neurologist. Let us know. Thanks.
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Old 01-01-2021, 03:04 PM #12
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Hi suzyt, and Welcome!

There are often long long waits for appointments with neurologists, I've noticed. I hope that when you finally have your appointment, there will be some helpful information coming your way.

You mentioned walking with bare feet. I have diabetes and was told (often) never to walk around barefooted or even with just socks on. This was hard for me to adjust to but over the years I've got used to always having shoes or at least substantial slippers on my feet.

The point is that if your feet are numb, you aren't going to notice it if something injures your foot. You might not notice it until you actually inspect your foot. Wearing shoes protects you from that kind of injury--which can turn into a serious problem pretty fast sometimes.

This suggestion won't help your symptoms to go away but maybe it will keep you from stepping on a tack or something else that could cause a problem.
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Old 01-10-2021, 05:07 PM #13
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Originally Posted by suzyt View Post
Saw GP today. Basically all blood tests ok, so back to neurologist for questions.
1. Could it be hereditary, both my sister (82) and my mother at 80+ years have had difficulty with their feet. Never found out what the problem was. Can I find out if it is hereditary because I have. 44 yr old son and 2 grandchildren. Want to know so I can let them know.

2. Does the progression that I am experiencing going to be worse sooner. Or is it going to progress slowly.

3. What preparations do I need to make in my life if progression is rapid.

Any advice, info is welcome particularly about hereditary stuff
Suzy
Try to get nerve velocity testing done as it sounds like it could be CMT, a common neuropathy that sometimes only shows itself later in life.
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Old 01-13-2021, 10:22 PM #14
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Originally Posted by caroline2 View Post
Suzyt, welcome and you came to a good place for a lot of neuropathy information. a LOT... and since I've been dealing with it for over 10 yrs due to hip replacement, I can say it does a lot of strange STUFF in the body, mine for sure...I can speak only for me, and I'm learning more and more and managing what comes my way...some days I get what I know understand as a "flair" and then there is the normal every day nerve pain... Not fun but it's manageable.. Personally I have NOT seen doctors for this damage as for one, I do not take pharma drugs and that is what they offer...so for me, Dr. Google, friends and this forum get me thru it...

And foods can exacerbate it all, sugars are evil. Watch them and when I don't I pay.
Any suggestion on how much Grape Seed Extrat is useful Please.
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Old 01-13-2021, 10:42 PM #15
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Originally Posted by CMTMatt View Post
Try to get nerve velocity testing done as it sounds like it could be CMT, a common neuropathy that sometimes only shows itself later in life.
Thanks again. I am seeing my GP again because I can't get an appointment with the Neurologist until mid MARCH!!! I am going to try and get another Neurologist but fear that they will all be the same - long waits. In the meantime I am going to go onto the plant based diet - I am generally vegetarian, and don't have a lot of trans-fat food. Can't hurt I guess. Also, will mention my thyroid as it is marginal hypothyroidism to GP.

From what I have read so far, there is not a lot I can do other than good food, excercise. I guess I have to hope it doesn't develop too quickly. At the moment I feel that it has. I am 74
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Old 01-26-2021, 10:03 PM #16
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I managed to get appointment with neurologist on 16 February. My PN has progress up to my thighs now. Guess I can report it when I see him. Over 2 weeks from now, wonder how much further it will progress by then. My fear is that I will lose mobility. Would appreciate hearing from anyone on this.
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Old 01-27-2021, 04:00 AM #17
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Originally Posted by suzyt View Post
I managed to get appointment with neurologist on 16 February. My PN has progress up to my thighs now. Guess I can report it when I see him. Over 2 weeks from now, wonder how much further it will progress by then. My fear is that I will lose mobility. Would appreciate hearing from anyone on this.

Hey suzyt,

Although you've not outlined in any detail your symptoms, the kind of onset you have described will not seriously affect your mobility ever. Ever. Generally for most people PN symptoms slowly gets worse, plateau, and then slowly improve.

I think its important to get outside and walk or cycle every day. Light and forward motion are very important for well being. Your body will adapt to exercise by preparing it for more exercise. Light and forward motion are very calming.

What are you doing to help yourself? I think it's important to create the optimum conditions to allow the body to heal itself. Tingling is actually a symptom of nerve axon regeneration.

Let us know how you are,

Atty
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Old 01-27-2021, 04:48 AM #18
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Thank you so much. I appreciate the feedback. For exercise I either go for 1 hour walk or do high intensity exercises at home or do yoga lates for 1/2. Hour So I probably exercise in some form most days.

I guess my fear derives from the fact that over the last 2 months it has progressed and I am thinking that at this rate it could be debilitating. I take heart that it should plateau. And that I won’t lose mobility. Thanks.

I will let know the outcome of my visit to the neurologist.
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Old 02-02-2021, 03:53 AM #19
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Originally Posted by Atticus View Post
Hey suzyt,

Although you've not outlined in any detail your symptoms, the kind of onset you have described will not seriously affect your mobility ever. Ever. Generally for most people PN symptoms slowly gets worse, plateau, and then slowly improve.

I think its important to get outside and walk or cycle every day. Light and forward motion are very important for well being. Your body will adapt to exercise by preparing it for more exercise. Light and forward motion are very calming.

What are you doing to help yourself? I think it's important to create the optimum conditions to allow the body to heal itself. Tingling is actually a symptom of nerve axon regeneration.

Let us know how you are,

Atty
Thanks, I do fair bit of exercise. Wondering whether you have any idea how long it takes to plateau and also to go away? Appreciate your response.
Suzyt
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Old 02-03-2021, 03:13 AM #20
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Thanks, I do fair bit of exercise. Wondering whether you have any idea how long it takes to plateau and also to go away? Appreciate your response.
Suzyt
Hey Suzyt,

You are an amazingly fit 74 year old. Not many people your age can do what you do. I hope you realise that.

Neuropathy is awful. Neuropathy is grim. It wrecks your present and it steals your future and it even messes with your past. But only if you allow it to. Everyone who has had neuropathy has had some point feared a wheelchair loss of independence as their symptoms worsen. We are all human and we are all vulnerable. We all face uncertainty.

I can't answer your question, the one that you have been asking throughout this thread, namely, when will it all go away? I don't think even a neurologist could make an accurate prognosis such is the variability of symptoms for a given individual.

You appear to have got diet and fitness sorted and presumably supplements but I'm not sure you have manged the anxiety/stress that neuropathy brings.

I've been interested in the value of calmness, anxiety reduction, rest and sleep in healing/ well-being. In the first lockdown, I had 3 months paid leave and despite my PN symptoms I had a sense of peace and calm when the world and my career paused. It was a joy. My goal has been early retirement since.

I've been very much influenced by the neuroscientist and ophthalmologist Andrew Huberman. He has a podcast on YouTube. Although this isn't from the podcast, this is a good start.

The Science of Stress, Calm and Sleep with Andrew Huberman - YouTube

Headspace on Netflix is also a great introduction to Mindfulness, and meditation though I think its an advert for a Paid for App.

One thing that Huberman talks about as a method for easing ourselves to sleep is to focus on Gratitude last thing at night. This engages our nervous system switches off the fight/flight reflex and so aids restful sleep.

We should count our blessings, not sheep!
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