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-   -   Ok I Wanna Hear It lol (https://www.neurotalk.org/peripheral-neuropathy/217597-ok-wanna-hear-lol.html)

anon050715 03-18-2015 06:42 PM

Ok I Wanna Hear It lol
 
If I do have this neuropathy is it fatal? I'm 34, married with two boys 8 and 5. I just don't understand how a month ago I was tingling in the feet and now it moves all over. It's scary stuff.

anon050715 03-18-2015 06:43 PM

Ok I Wanna Hear It lol
 
It's all sensory at this point with no motor. I'm not aware of any autonomic issues. I can stand up without fainting, I go potty like normal except when I take a leak and put it back up there's always a little left over lol...dangit ok I said it I pee a little on myself but this isn't a new symptom.

mrsD 03-18-2015 06:53 PM

Get your spine evaluated for disc herniations, or other pathologies. And also see if you have some prostatitis...as this can happen at any age for a man.

anon050715 03-18-2015 07:06 PM

Quote:

Originally Posted by mrsD (Post 1130206)
Get your spine evaluated for disc herniations, or other pathologies. And also see if you have some prostatitis...as this can happen at any age for a man.


Interesting and thank you. I notice most of my issues are on the left side of my body...face all the way down to my toes. Would that be spine?

Healthgirl 03-18-2015 07:15 PM

Mine all started on the left side and I was convinced it was my spine. Ive been told by 3 neurologists and 2 spinal surgeons that it isn't. You still have a lot of tests to undergo though... Complete spine and brain MRI will probably follow the EMG.

anon050715 03-18-2015 07:50 PM

Quote:

Originally Posted by Healthgirl (Post 1130211)
Mine all started on the left side and I was convinced it was my spine. Ive been told by 3 neurologists and 2 spinal surgeons that it isn't. You still have a lot of tests to undergo though... Complete spine and brain MRI will probably follow the EMG.


Roger Healthgirl

anon050715 03-18-2015 09:30 PM

Kinda freaked out it could be Cancer. What tests determine if it's Cancer?

echoes long ago 03-18-2015 10:04 PM

there are blood test panels for paraneoplastic cancers that also cause peripheral neuropathy.

anon050715 03-18-2015 10:17 PM

Quote:

Originally Posted by echoes long ago (Post 1130255)
there are blood test panels for paraneoplastic cancers that also cause peripheral neuropathy.


I'm going to request to be tested for that.

anon050715 03-18-2015 10:59 PM

1 Attachment(s)
So this was the first lab ordered by the neurologist. I guess doesn't tell much regarding the paraneoplastic cancers or does it? Would something in this lab show up abnormal?

Attachment 8759

LisaAnnB 03-18-2015 11:47 PM

You need to look into that B6 level a bit. Are you supplementing with something or drinking a lot of protein shakes or? High levels of B6 can cause peripheral neuropathy over time. You shouldn't be getting more than 100mg a day and in reality it should be much much less than that even. Check your supplements.

Kitt 03-19-2015 01:18 PM

Welcome LisaAnnB. :Tip-Hat:

anon050715 03-19-2015 03:44 PM

Crap

I Googled "paraneoplastic" syndromes and kinda freaked out. The Mayo Clinic site said the neurological symptoms develop quickly from this. My symptoms have developed quickly as well. Would a standard lab with Sed Rate and total protein that is normal mean anything?

mrsD 03-19-2015 04:19 PM

The typical cancer triggers are lung cancer and some bone marrow ones. For females, ovarian is often tested for.

If your avatar is indicative of your age, I'd say it would be a rare thing to have for you. Not impossible, but not one of the first things to look for.

I think you should get the DNA test for MTHFR mutations.
This is more common and up to 30% of people can have it.
Poor methylation means B12 and folic acid are not activated in the body, so nerves suffer. Poor B12 functions are often mistaken for MS in the beginning of diagnosis.

Next most common is gluten intolerance.
Also exposures to vaccines, and certain food intolerances like gluten intolerance. Some people with gluten intolerance show MS like nerve symptoms.

Exposure to certain antibiotics in the past -- fluoroquinolones and Flagyl/Tinadmax also cause nerve damage.

Look at whatever you are doing when symptoms occurred. And try to change your lifestyle away from that. If it is overuse exercise, minimize that factor. If it is dietary, remove suspected intolerances with an elimination diet. Avoid exposures to chemicals. Avoid alcohol and smoking... smoking contains many toxins and also in males affects the circulation. (peripheral artery disease called PAD)

Look to the more common and obvious... the paraneoplastic area is one to look at last.

anon050715 03-19-2015 04:25 PM

Thank you!!

I'm 34 year old male don't drink ever and dip snuff.

Running actually relieves the symptoms. Resting or later in the day symptoms are worse.

The rather sudden onset is what baffles me. If it was some sort of dietary intolerance I would assume I would of had symptoms before age of 34.

Thanks for some peace of mind :)

Susanne C. 03-19-2015 04:33 PM

Would walking relieve the symptoms as well as running does? Running may be overdoing it. I have a sensory motor neuropathy that is pretty advanced but walking on soft trails does relieve some of the pain. Are you running on a hard surface?
It is very common for neuropathy symptoms to get worse in the evening.
Also, about caffeine, I find that it helps me rather than hurts but everyone is different.

anon050715 03-19-2015 04:35 PM

Quote:

Originally Posted by mrsD (Post 1130405)
The typical cancer triggers are lung cancer and some bone marrow ones. For females, ovarian is often tested for.



If your avatar is indicative of your age, I'd say it would be a rare thing to have for you. Not impossible, but not one of the first things to look for.



I think you should get the DNA test for MTHFR mutations.

This is more common and up to 30% of people can have it.

Poor methylation means B12 and folic acid are not activated in the body, so nerves suffer. Poor B12 functions are often mistaken for MS in the beginning of diagnosis.



Next most common is gluten intolerance.

Also exposures to vaccines, and certain food intolerances like gluten intolerance. Some people with gluten intolerance show MS like nerve symptoms.



Exposure to certain antibiotics in the past -- fluoroquinolones and Flagyl/Tinadmax also cause nerve damage.



Look at whatever you are doing when symptoms occurred. And try to change your lifestyle away from that. If it is overuse exercise, minimize that factor. If it is dietary, remove suspected intolerances with an elimination diet. Avoid exposures to chemicals. Avoid alcohol and smoking... smoking contains many toxins and also in males affects the circulation. (peripheral artery disease called PAD)



Look to the more common and obvious... the paraneoplastic area is one to look at last.


I guess the old maxim, "if you hear hoof beats...look for horses not zebras" in this case lol

anon050715 03-19-2015 04:39 PM

Quote:

Originally Posted by Susanne C. (Post 1130409)
Would walking relieve the symptoms as well as running does? Running may be overdoing it. I have a sensory motor neuropathy that is pretty advanced but walking on soft trails does relieve some of the pain. Are you running on a hard surface?
It is very common for neuropathy symptoms to get worse in the evening.
Also, about caffeine, I find that it helps me rather than hurts but everyone is different.


What causes your PN?

mrsD 03-19-2015 04:44 PM

Understanding how the various nerve fibers work, will help you understand your symptoms.

The Alpha Alpha fibers, (see the link I put up for LouLou) have priority and speed to send the impulses to your brain as to where your feet are. So when you run....these fibers have a priority for perception. When you are at rest, the Alpha fibers are not sending much information, so the slower fibers then get thru.
http://faculty.washington.edu/chudler/cv.html

There is also a temperature priority... cold will block heat sensing or burning signals. This is why PNers like cool temps, and use menthol containing products to block burning signals.

You are very early in for your PN.... it will take some time for you and your doctors to figure it all for you. They will only go "so far" and you will have to learn the rest yourself. We here can show you where to look and how to search, but in the end the majority of the work is going to be YOURS.

anon050715 03-19-2015 05:06 PM

Wow!! Great post...golf clap

Neuroproblem 03-19-2015 06:30 PM

Quote:

Originally Posted by UTGrad (Post 1130418)
Wow!! Great post...golf clap

Based on your last post, it was recommended you go see your doctor for an MRI, at 34 you should have insurance that can cover this expenses. One of the possible causes of your neuropathy, was that you run 4mile per day, And exercising that much, and running is ultimately damaging to the body, especially the bone, muscle,nerves. Running everyday, doesnt allow your body to regenerate so you will eventually obtain complications from those issues.
paraneoplastic syndromes are different depending on what type of cancer you have. of cancer usually have other symptoms, but this is best done with an oncologist/hematologists.

anon050715 03-19-2015 07:29 PM

Quote:

Originally Posted by Neuroproblem (Post 1130444)
Based on your last post, it was recommended you go see your doctor for an MRI, at 34 you should have insurance that can cover this expenses. One of the possible causes of your neuropathy, was that you run 4mile per day, And exercising that much, and running is ultimately damaging to the body, especially the bone, muscle,nerves. Running everyday, doesnt allow your body to regenerate so you will eventually obtain complications from those issues.

paraneoplastic syndromes are different depending on what type of cancer you have. of cancer usually have other symptoms, but this is best done with an oncologist/hematologists.


Thanks

I've got insurance, a neurologist and a EMG scheduled for Monday

Susanne C. 03-19-2015 07:50 PM

Sorry, mine is hereditary, CMT type 2, axonal degeneration. I repeat it so often i figure everyone gets tired of hearing it.
It is incredibly frustrating, but Mrs. D.'s advice is spot on. Many people never get a clear diagnosis. Lots of cases remain idiopathic, progressive, and untreatable. The push in the early days is to find out if your symptoms have a definite cause and treatment plan, the earlier the better the prognosis if you are one of the lucky ones.

xrox 03-19-2015 08:16 PM

Quote:

Originally Posted by Susanne C. (Post 1130464)
Sorry, mine is hereditary, CMT type 2, axonal degeneration. I repeat it so often i figure everyone gets tired of hearing it.
It is incredibly frustrating, but Mrs. D.'s advice is spot on. Many people never get a clear diagnosis. Lots of cases remain idiopathic, progressive, and untreatable. The push in the early days is to find out if your symptoms have a definite cause and treatment plan, the earlier the better the prognosis if you are one of the lucky ones.

Susanne, is your CMT type giving you issues with muscles as well as nerves? Since my issues seem to be with sensitive nerves (carpal and tarsal tunnel with widespread tinel sign) I wonder if I have HNPP.

http://ghr.nlm.nih.gov/condition/her...essure-palsies

Kitt 03-19-2015 08:32 PM

Jumping in here. Yes, CMT is also known as Hereditary Motor Sensory Neuropathy (HMSN). It affects the muscles and the nerves. (That's just a simple explanation.) CMT is a complicated syndrome. There are over 70 types identified so far and the number is growing. It is inherited.

HNPP (Hereditary Neuropathy with Liability to Pressure Palsies) is the opposite of CMT1A. Here is the home site for it:

http://www.hnpp.org/

CMT1A is a mirror image. It has an extra copy of PMP22 whereas HNPP has a deletion.

The site explains it well. There is DNA blood testing available for HNPP.

echoes long ago 03-19-2015 09:24 PM

anti hu, anti yo anti ri would be some of the blood tests used to look for paraneoplastic antibodies. a neurologist or any doctor could order those tests.

Susanne C. 03-19-2015 09:47 PM

Quote:

Originally Posted by xrox (Post 1130477)
Susanne, is your CMT type giving you issues with muscles as well as nerves? Since my issues seem to be with sensitive nerves (carpal and tarsal tunnel with widespread tinel sign) I wonder if I have HNPP.

http://ghr.nlm.nih.gov/condition/her...essure-palsies

Yes, I have extensive muscle atrophy, with limited range of motion in arms and legs, completely unable to move toes, barely able to move ankles, and progressing. Neuro at Johns Hopkins suspected HNPP as well and I had the test done for it as he found pinched nerves everywhere he checked with EMG, but test was negative. Simple but expensive blood test will tell you.

xrox 03-19-2015 10:07 PM

Quote:

Originally Posted by Susanne C. (Post 1130495)
Yes, I have extensive muscle atrophy, with limited range of motion in arms and legs, completely unable to move toes, barely able to move ankles, and progressing. Neuro at Johns Hopkins suspected HNPP as well and I had the test done for it as he found pinched nerves everywhere he checked with EMG, but test was negative. Simple but expensive blood test will tell you.

I don't have any weakness or atrophy yet. When did you first notice the muscle weakness/atrophy as a symptom? Is there a chance the progression will slow/stop?

en bloc 03-19-2015 10:17 PM

I may be wrong, but I don't see cancer or even B12 causes for 'sudden' PN. these seem to be more slowly progressing types.

You indicated in another thread that you haven't had an injury, so compression is likely out of the question and no antibiotics or other medications, so toxic shouldn't be a problem either. I'm still thinking you should be worked up for autoimmune more than cancer testing. Immune mediated PN is typically rapid onset like you've presented with. Have they done any work up for you in this regard?

Do you have any family history of autoimmune disorders?

anon050715 03-19-2015 10:20 PM

Quote:

Originally Posted by en bloc (Post 1130499)
I may be wrong, but I don't see cancer or even B12 causes for 'sudden' PN. these seem to be more slowly progressing types.



You indicated in another thread that you haven't had an injury, so compression is likely out of the question and no antibiotics or other medications, so toxic shouldn't be a problem either. I'm still thinking you should be worked up for autoimmune more than cancer testing. Immune mediated PN is typically rapid onset like you've presented with. Have they done any work up for you in this regard?



Do you have any family history of autoimmune disorders?


No family history of autoimmune that I'm aware of. My primary care doc possibly with some communique from the neuro believe it's an immune response possibly from an infection.

Neuroproblem 03-20-2015 03:48 AM

Quote:

Originally Posted by UTGrad (Post 1130500)
No family history of autoimmune that I'm aware of. My primary care doc possibly with some communique from the neuro believe it's an immune response possibly from an infection.

Most autoimmune are not heridatary, mostly environment. only a select few autoimmunes are known to be heriditary. excessive running, also can cause neuropathy, and can trigger autoimmune diseases as well.

anon050715 03-20-2015 04:54 AM

Quote:

Originally Posted by Neuroproblem (Post 1130523)
Most autoimmune are not heridatary, mostly environment. only a select few autoimmunes are known to be heriditary. excessive running, also can cause neuropathy, and can trigger autoimmune diseases as well.


Do you have any links or medical claims to back up excessive running causes neuropathy and autoimmune diseases?

glenntaj 03-20-2015 05:14 AM

I would suspect--
 
--that if one is a hard-training athlete with neurological symptoms, and relatively young, the first thing to look at, barring any history of injury or other known systemic conditions, such as autoimmunity, hereditary neuropathies,or celiac, would be to look at the spinal cord.

Nerve root problems from spinal osteophyte compression can result in exactly the same symptoms as more systemic peripheral nerve conditions. Sometimes in such cases there is marked differences in symptoms when different positions are assumed or when exercising vs. not exercising, but not always.

Susanne C. 03-20-2015 06:49 AM

Quote:

Originally Posted by xrox (Post 1130497)
I don't have any weakness or atrophy yet. When did you first notice the muscle weakness/atrophy as a symptom? Is there a chance the progression will slow/stop?

Do you have reason to believe that yours is a hereditary neuropathy? I do not want to worry you unnecessarily, my sitution is more severe than many, I had poor balance and coordination as a child, was never able to run well or without falling, and only learned to ride a bike with great difficulty. So the muscle weakness has always been present, as have the tight Achilles' tendons. The numbness began in my early 30's. The progression of CMT is highly variable but it always progresses. I have been on a fast track of deterioration lately, but I am 53.
This doesn't come on quickly as a rule, usually even if a diagnosis is made later in life you can see that the signs were there all along. Neuropathies that come up quickly are often the ones that can be halted or reversed if a cause can be found.

xrox 03-20-2015 09:07 AM

Quote:

Originally Posted by Susanne C. (Post 1130541)
Do you have reason to believe that yours is a hereditary neuropathy? I do not want to worry you unnecessarily, my sitution is more severe than many, I had poor balance and coordination as a child, was never able to run well or without falling, and only learned to ride a bike with great difficulty. So the muscle weakness has always been present, as have the tight Achilles' tendons. The numbness began in my early 30's. The progression of CMT is highly variable but it always progresses. I have been on a fast track of deterioration lately, but I am 53.
This doesn't come on quickly as a rule, usually even if a diagnosis is made later in life you can see that the signs were there all along. Neuropathies that come up quickly are often the ones that can be halted or reversed if a cause can be found.

No history in my family but the HNPP description is the only one I've read that fits my symptoms of widespread nerve sensitivity. If I lightly scratch my wrists or elbow or bicep I get tingling and electric shocks in my palms and fingers. Same goes for my feet and ankles.

I have a constant burning in both wrists and ankles as well.

Have you looked into stem cell treatment or is that just a scam? Claims sound a little fishy to me.

xrox 03-20-2015 09:19 AM

Quote:

Originally Posted by UTGrad (Post 1130527)
Do you have any links or medical claims to back up excessive running causes neuropathy and autoimmune diseases?

I am not a doctor but I have experience with severe spine issues.

There is no claims or evidence that I no of. There may be a link to running excessively and DDD (especially if there is a family history) but even that is not proven AFAIK.

As for nerve roots. There is no way that nerve root compression would cause widespread paresthesia like yours unless you had many multiple nerve roots compressed at the same time.

It is more likely that you would have central cord compression from a ruptured disc or bone spur. However, compression of the cord (myelopathy) would most always show a weakness along with sensory problems.

And since it is your face down to toes it would have to be cord compression very high up (C1-C2).

Other spine/brain problems that might cause your symptoms would be chiari malformation or syringomyelia.

You could do a self test for Hoffman and Babinski signs. A positive result might point toward a spine issue. A negative result does not rule it out.

anon050715 03-20-2015 09:19 AM

Ok folks here's a question that has me baffled.

In the morning I have virtually no signs of neuropathy. It's like my life is normal again. By early afternoon the tingling starts. By early afternoon I've been standing, riding in a car, walking around, etc.

Does this pattern indicate anything? I'm wondering if it could be spine related.

anon050715 03-20-2015 09:21 AM

I'm an account executive that drives around in a car a lot everyday seeing clients. My tingling gets worse later in the day after spending time in the car.

Kitt 03-20-2015 09:24 AM

Xrox, there is no stem cell treatment for CMT. Trials are being done. As I posted before, there are so very many types of CMT so it makes it difficult that way too. Symptoms vary greatly even within the same family. I am very familiar with CMT since it has been in the family from way back. Also, I have done much research on it and I keep up on the research from reputable sources.

No stem cell treatment for HNPP either.

Here is a site on HNPP.

http://hnpp.info/primer.html

Hope you find an answer.

The other site for HNPP that I posted earlier was written by a gal who has HNPP. She was at a support group meeting we had and she explained it well. She has it in it's later stages now where she is in a wheelchair and everything affects her greatly. She does not get better as HNPP usually does in the early stages. Her article is great.

Susanne C. 03-20-2015 09:26 AM

Quote:

Originally Posted by xrox (Post 1130562)
No history in my family but the HNPP description is the only one I've read that fits my symptoms of widespread nerve sensitivity. If I lightly scratch my wrists or elbow or bicep I get tingling and electric shocks in my palms and fingers. Same goes for my feet and ankles.

I have a constant burning in both wrists and ankles as well.

Have you looked into stem cell treatment or is that just a scam? Claims sound a little fishy to me.

I'm at peace with the fact that this is incurable. It could be a lot worse, my kids are mostly all adults, the youngest is 16. This level of disability would have been a disaster 25 years ago with three under 4. There are no known effective treatments, but for type 1-A there are some promising medication combos being tried out in Europe that may prove effective.
That does sound like pinched nerves, when mine flare up, especially the elbows, it feels like that.
Pretty much every possible treatment has been discussed on this forum and pain management is all there is for many of us. Only IVIG is an actual treatment and that is for a small percentage of neuropathy patients. Symptoms can be ameliorated for some by supplements, diet, lifestyle changes, etc. but be very wary of anyone who claims to have a cure.


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