Peripheral Neuropathy Diagnosis
 

Hi,
I have just been diagnosed with minor peripheral neuropathy after experiencing numbness in soles of my feet. Had EMG and this showed the diagnosis as minor, I think the numbness has been there for a long time like months. Previously I felt when walking bare feet on wooden floor that there was grains of sand but there wasn’t, that was years ago. Since my diagnosis I feel like the condition is moving first to the top of my feet and the slowly up my legs. Going back to my GP after Xmas but wondered if this is common and if the progression will get worse.

Hi suzyt

Welcome to the community :).

It might be worth checking out the PN forum ( https://www.neurotalk.org/peripheral-neuropathy/) to see what kind of things members tend to ask.

I hope that your meeting with your GP goes well.

Best wishes.

welcome suzyt. :Tip-Hat: Hope you find an answer.

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.

Progressive Peripheral Neuropathy GP update
 

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

Makes me wonder if it is hereditary like Charcot Marie Tooth syndrome (CMT). EMG and NCV are good to have. Hope you find an answer. If it is CMT it will progress. And CMT is the most common "inherited" neuropathy.

Thanks for advice. Can anyone who has CMT advise if the rate of progression?

Symptoms vary greatly within the same family. Nobody can predict how it will progress. And there are over 70 types of CMT and still counting. CMT1A is the most common. You should find out if CMT is indeed in the family.

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.

Hi suzyt, It's a long time waiting to see the Neurologist until the end of January if you're really worried but try not to overthink it all and make yourself sick while you wait.

Peripheral Neuropathy Forum

You may want to use the search feature there as well.

Advanced Search Feature

Wait and see what you find out at the neurologist. Let us know. Thanks.

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.:)

Grape Seed Extract
 

Any suggestion on how much Grape Seed Extrat is useful Please.

Cmt
 

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

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

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.

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!

I really appreciate your feedback and I believe I can benefit from addressing the stress aspect of my life. I guess my original question about when it will go away, also asked on what basis do you think the PN will plateau and then recede? Is this common? If it is then I can deal with my current symptoms. If it is not common but has been known to go away upon dealing with the stresses in ones life that’s another marker. Each day my symptoms get worse. It’s hard to see how this gets better. Appreciate further thought on this.
I will also put more attention to your suggestions on calmness.

Blood pressure meds and PN
 

A thought- I read that some medications for treating high blood pressure can be the cause of peripheral neuropathy. Has anyone had any experience on this?

Hi suzy,
Don't forget there's the Peripheral Neuropathy Forum . Just click on the underlined area and it will take you there. You might find more responses to specific questions like this one over there as more people with PN will be checking that forum rather than this New Member area.

There's also the sub-forum on PN PN Tips, Resources, Supplements & Other Treatments Sub-Forum

Search feature for all the forums is https://www.neurotalk.org/search.php
If you have a specific medication you're looking into, you could run that through the advanced option and click on the PN forum in the list of Options there. Need any help with any of that just post and someone will be sure to help.

btw, I'm sorry to read that your symptoms are still getting worse. I hope you get some answers when you do get in to see your Specialist. I developed neuropathy after taking 2 oral medications for melanoma treatment [called Targeted Therapy]. They were ceased after only about 10 days (7 to 10 days, forget exactly now) but anyway my neuropathy got really bad in both legs in that week or so but then worse for some months but then began to subside and for the past 3 months or so it's only really bad in my feet - toes to ankles both legs, and that hasn't changed. I call it a plateau. On different type of treatment now and just beginning to get it in my fingertips so I'm ramping up my B12.

Please be sure to check on all the B12 information in the PN area. Methycobalamin. Used not be able to get it in Au. I've been buying it in from overseas for years. Now I think some of the pharmacies are carrying it.

Have a good day.

I agree with Lara here, but assumed you would have read all the threads she describes. There's not many of us, perhaps we should pool our resources in 1 thread. I think the best active thread is the LeedsLad84 thread. He has extensive experience, has recorded his symptoms and has seen Neurologists. He would be a good person to take questions.

Take care. Let us know how you get on with your appointment.

2nd appointment with Neurologist
 

Had my 2nd appointment with Neurologist and he did another EMG and the measurements were the same after 2months. Talked about what I described as it progressing to the point where I can feel it all over. He didn’t seem bothered about this and said sometimes the brain tricks the body. I have to get some more blood tests and chest X-ray to eliminate other factors which he didn’t elaborate. I go back in 6 weeks.

As I read what I have written it sounds like he was not that good but I feel more comfortable now about things. He did talk about sensory neuropathy and I am a bit confused about the difference. Anyone have any ideas?

That sounds encouraging suzyt.

I hope that things work out well for you.

Hey suzyt,

Glad to see you got to see your neurologist. I copy and pasted this from the link below. The link is fairly comprehensive.

Type of Nerves

1. Motor
2. Sensory
3.Autonomic

Motor nerves control the movement of all muscles under conscious control, such as those used for walking, grasping things, or talking.

Sensory nerves transmit information such as the feeling of a light touch, temperature, or the pain from a cut.

Autonomic nerves control organs to regulate activities that people do not control consciously, such as breathing, digesting food, and heart and gland functions.

Peripheral Neuropathy Fact Sheet | National Institute of Neurological Disorders and Stroke

Best wishes

Attty

Thank you for the information. Things are a bit more clearer. I now wait for my next appointment in 6 weeks to see outcome of blood tests and X-ray.

Covid and PN
 

Anyone with PN and has had Covid vaccination and has had adverse reaction please. I am due for Astra Zeneca one soon.

Thanks in advance

Hey Suzyt

I had the Pfizer vaccine in January and apart from a sore shoulder for a day had no side effects.

Neurologist visit
 

After having many blood tests all showing normal my Neurologist has got me to get an MRI of brain and spine. This is to rule out MS. I’m having this done in a couple of weeks and visit to Neurologist May 20. He is confident that I have not got MS but also says that important to rule it out as part of my ongoing dealing with my sensory neuropathy it’s crucial to stop looking for cause if none has been identified. The brain works in mysterious ways and if I focus too much on my condition it seems to exacerbate the neuropathy. I have noticed that when I am otherwise occupied I do not seems to notice it. The only aspect of it is that when I do heavy exercise my legs feel very heavy. So for the time being I am going to focus on the other parts of my life and meditation. If after my MRI I find out it is not MS I will get on with my life. If it is MS then I’ll deal with that then.
Appreciate any thoughts. In case you have not read my earlier stuff, I have neuropathy in my feet which has not progressed in 6 months. But I have sensory neuropathy which started 6 months ago and progressed to most of my body.

Hey Susyt,

What strikes me is at 74 you can do "heavy exercise" I don't think many 74 year olds exercise at all or are capable of exercising.

I think its a good idea to have an MRI scan of your brain and spine. I've had them and both negative. The chances of late onset MS for you are negligible given your lack of symptoms.

I think you've hit the nail on the head with respect to your attitude to your symptoms

"I have noticed that when I am otherwise occupied I do not seem to notice it."

If you were able to adopt the attitude that your symptoms were trivial and were dismissive of them, if you chose to ignore them wherever possible and just get on with your life, you could, in a way, set yourself free.

Too often, and I don't mean you at all, people become so preoccupied with their condition that it becomes part of their identity. They become experts in whatever they suffer with and it engulfs them. It takes over their lives.
I appreciate that some people's conditions give them no choice. You only have to read desperate heartbreaking stories on this site. But for many people we have a choice.

To quote John Milton

"The mind is its own place and in itself, can make a Heaven of Hell, a Hell of Heaven."

Anyways, thanks for the update. I hope you will let us know how you get on.

Take care and best wishes,

Atty

Thank you Atty, your comments here and elsewhere are an inspiration and am heartened by your optimism. Will certainly report after i have the MRI which by the am dreading because I get claustrophobic and will need Valium to get me through it.

suzyt,
I hope that the medical tests you're undergoing can shed some light on the cause of your PN, and that they can offer some sort of remedy. My tests all came back negative, with an overall diagnosis of "idiopathic". :rolleyes:

Keep moving! Keep meditating! Your best bet is keeping your positive attitude and focusing on the good in your life.

I get claustrophobic in the MRI machines too. The PET and CT are wide bore so I can deal with those. However, because I have so many of them all and because of the distress it causes me I am prescribed a twilight sedation added to the cannula as I get IV contrast. I still get extremely anxious and my BP goes through the roof, but if I didn't have this I would not be able to have any MRIs at all. Not many medical diagnostic facilities do this. They mostly just give patients needing light sedation some type of pill.

It might help to get in touch with your doctor or your GP so that they put "needs sedation" on the referral form. The facility that does give sedation in my area only does it on certain days of the week, so that's something you need to sort out in advance with them.

Of course, if you think you can deal with the 20 mins or so in the machine, then that's even better, but nobody should have to suffer with extreme anxiety.

Let us know how you get on.

.

.Post MRI
 

It has been awhile since I have had the MRI. The outcome was mixed. Firstly they identified that I have some white matter - which could mean that I will develop dementia at some point. My mother did at 90 and my sister has vascular dementia at 81 and sadly has had to go into residential care.because her mobility has been severely compromised with falls and cannot live on her own anymore. I have always thought that with my family history I may be develop dementia as well. The MRI also identified that I have some sort of fungal thing in my sinus - I am having this investigated this week, but my doctor is not concerned - all fixable.

The MRI did not identify any more regarding the neuropathy. So here I am no better off regarding knowing any more about what is causing the neuropathy. It has been 6 months now since the start and the overall body sensations are continuing and are pretty much all over my body. I have to say that they have got worse since I have had to deal with my sister going into residential care, I am having to sell her home to pay for the care costs and also deal with her extreme dislike going into care.

I need to come to terms with my own future and the possibility that I may need care either because of the potential dementia or that the neuropathy will affect my mobility. At the same time, I am keeping up the excercises, yoga and will go back to doing more mediation.

I am really hoping someone will say to me "don't worry about the neuropathic sensations - they may not go away, but they won't affect your mobility going in the future". I know that's not going to happen, so I have to come to terms with it as much as I can.

Also the Neurologist said that with my all body sensations - sensory neuropathy that the brain sometimes misfires and causes this to happen, that sometimes it can be the brain blocking out a traumatic experience. I have been racking my brains to figure if I have had some kind of traumatic experience, but can't. I guess if I could, then the brain wouldn't be blocking it out - catch 22.

I have not made another appointment with the Neurologist as he says he has done all the tests and therefore no further investigation.

I hope someone out there can offer some positive feedback.

SuzyT

Hey SuzyT,

Thanks for the update and for sharing your experiences. The conclusions you have arrived at all seem unnecessarily pessimistic. Your neurologist has spoken speculatively, off the cuff about trauma and that has not been helpful. I've only ever had one telephone appointment with my neurologist. His words forked no lightening.

The only certainty is that your symptoms became worse because of your sister going into residential care. That will be down to stress. That is the key, manage your stress levels, manage your symptoms.

A word about mobility. You have, at worst, mild sensory neuropathy. This affects your sensory nerves. This does not affect motor nerves and therefore will not affect mobility.

I have more to say, but have to go to work soon. So will write again.

Best wishes,

Atty