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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.
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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.
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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.
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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? |
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.
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Roger Healthgirl |
Kinda freaked out it could be Cancer. What tests determine if it's Cancer?
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there are blood test panels for paraneoplastic cancers that also cause peripheral neuropathy.
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I'm going to request to be tested for that. |
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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?
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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.
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Welcome LisaAnnB. :Tip-Hat:
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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? |
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. |
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 :) |
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. |
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I guess the old maxim, "if you hear hoof beats...look for horses not zebras" in this case lol |
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What causes your PN? |
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. |
Wow!! Great post...golf clap
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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. |
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Thanks I've got insurance, a neurologist and a EMG scheduled for Monday |
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. |
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http://ghr.nlm.nih.gov/condition/her...essure-palsies |
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. |
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.
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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? |
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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. |
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Do you have any links or medical claims to back up excessive running causes neuropathy and autoimmune diseases? |
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. |
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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. |
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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. |
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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. |
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. |
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.
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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. |
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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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