Please help me to understand this. I thought that the brain and spine send messages to the peripheral nerves. That they can't be separated out, they are inter-related. So how can I have a peripheral neuropathy and not also have a central nervous system issue? (as in MS causing nerve issues)
I hope I don't sound too dense; I admit your reply will have to be on a 5th grade level. Thanks!
No MS, on Neurontin for peripheral neuropathy
Don't worry about being dense. I hope I can make sense just relaying the little bit I understand .
I had the muscle and nerve testing done ( can never remember the names ) the doc said my results were fine . he told me that my parasthesia was coming from my brain ( cns). If the muscles or nerves were damaged that would be peripheral neuropathy , resulting from something else.
So I guess MS does not damage the nerves (as in peripheral neuropathy,) just sends the wrong signals or no signal. Gosh I hope that made sense and I'm right :) or at least on the right track
I am having brain fog so trying to understand this is not possible but just wanted you to know I too have been confused about this in the past and I remember Quix did a post on it that made a lot of sense.
I will try to find it and see if I can bring it back up. Good luck on the Neurontin, I hope it helps!
I believe it's like a kink in a water hose...the brain is sending the message, but there is a kink along the way, disrupting the flow (message = water). I have a "kink" in my neck and a "kink" in my lower spine casing numbness in my limbs, but it has nothing to do with my brain.
Does tht make sense? Please, anyone correct me if I have the wrong!
Like I said on that other thread, I was dx-ed with idiopathic peripheral neuropathy for about six years. If you do turn out to have PN, try to get them to figure out what's causing it. The whole idiopathic thing drove me bonkers--if they don't know what's causing it, they can't do anything about it except by luck. PN is an effect of something else and not a cause. There are a whole bunch of possible causes, including autoimmune, metabolic, vascular, genetic, environmental (like heavy metals), and vitamin deficiency (B12 for example).
If they don't know what's causing it, all they can do is give you stuff like neurontin to try to mask the pain and discomfort. Even if they do find a cause, they might not be able to do anything, but at least someone is probably looking into it. The PN neuro told me that the majority of people with idiopathic PN are in their fifties and sixties when they get it and have painful small fiber neuropathy, which doesn't sound like either of us.
Also, when I was reading about PN, it apparently varies widely how many people get left in the wastebasket idiopathic PN category so you may need to look for someone who is willing to make the effort to get to the bottom of it (The first two neuros I saw seemed to think the effort to find out would outweigh any benefit b/c it wasn't likely they would be able to do anything more about it and my symptoms were mild).
Did the neuro tell you what he thought might be causing the PN?
Even though the peripheral nervous system and central nervous system are interconnected (and really what in the body isn't interconnected?), I think they are sort of biologically and structurally different and I'm pretty sure I read that usually diseases only affect one or the other (dunno where now tho--maybe something Quix said?). Of course, you can also have two different processes going on like Heather having MS affecting the CNS and diabetic neuropathy affecting the PNS. Think about Quix's post about why there's no MS below the thoracic spine--after that there is no white matter and the PNS starts (I'll see if I can find that one). If I'm way off base on this, someone please correct me.
If the NCV (and EMG if they do that) is normal, you might see if you could get an SSEP (somatosensory evoked potential). That can help distinguish whether sensory symptoms are caused by disruption to the PNS or CNS. The way the do this is they put an electrode at the ankle or wrist, at the beginning of the CNS on the spine and on the brain and then they shock you (not as bad as it sounds). Then they measure the speed of the signal from the ankle (input to the PNS) to the beginning of the CNS/end of the PNS and then from there to recognition by the brain. So if there's significant slowing of the signal, they can tell which place it's happening.
My symptoms totally feel like they're in my hands or feet or face or whatever, but apparently the signal transmission from there to the CNS is normal and it's after that that it gets mucked up. So I don't think you can tell by how it feels (although maybe the neuros can tell something from a description of how it feels?)
Sorry for writing a whole book, but hope this helps a little. I do hope you get some definitive answers!
Forgot to say that even if the NCV/EMG is normal, you can still have peripheral neuropathy, especially small fiber neuropathy, which won't show up on those tests. There are tests for small fiber neuropathy, but they're less commonly available.
You may be familiar with my posts. I was Dx with axonal peripheral neuropathy in January in 3/4 limbs. My NCV was normal that is the shock part of the test. My needle part (EMG) of the test was abnormal...the nerves worked ....messages were not making it to the muscles. I couldn't stand for more than 15 seconds or walk..it goes on and on....There are 100's of causes of PN
My NCV/EMG at Hopkins came back normal at the end of April. The docs assumed my test was done incorrectly by my neuro rather than taking the stance that I had been on antibiotic treatment for Lyme for 3 months and I'm getting better. I will tell you I have A LOT of foot and hand pain and leg fatigue even with a normal NCV/EMG.
I had a skin biopsy done on 3 parts of my left leg at Hopkins to look at the small fiber neuropathy. Results are not in yet.
My neuro made it clear and my experience and reading is that PN is symptom not a dx and that there is an underlying cause.....so that's when he started testing me for everything under the sun. Good luck and hanging in there.
Thank you so very much for this info. I am just so happy to be here, where people reach out and share what they know. My dh is getting used to hearing that someone said this and someone said that, speaking of you all as if we chatted on the phone. :-)
Sho, you didn't write a book, you gave information, and that's great! I appreciate it very much!
The Central Nervous System is the brain and the spinal cord. The nerves are not all continuous. They leave the spine to go out into the body, but they end first and connect with another nerve, the peripheral nerves. The wrong signal can originate from any point in the several different nerves that lead from the brain to the point on the body that that pathway is connected to.
The two kinds of nerves behave differently and different tests can usually tease out whether a problem is peripheral or central much of the time.
You have gotten some good information from Sho and Rebeccah. I would like to offer mine, too. I have been reading your posts since you first began here. I, personally, think it is very unlikely that you have MS, but I have seen all of your focus on this diagnosis and this diagnosis only. This may not be the case, but it is the way I have seen it come across on the forum. This is an observation only, and certainly not a criticism. You are very concerned about the things you feel from your body and are looking for answers. And most of what you read about here puts all those sensations in the perspective of MS.
It can be hard not to form you own feeling about a diagnosis and be sure that every doctor is missing it. I encourage you to to let these doctors do their testing (praying all the time this is not MS) and see what they find.
The field of peripheral neuropathy is huge and it does include all the things mentioned above. I also hope you let these doctors do the testing to see if they can pinpoint what the cause of your sensations is. It will be interesting to see what the results are.
Thank you for the information; I didn't realize that PN was not an actual thing, it is a symptom of something bigger. Well, waiting for the phone to ring and get me into an appt. for some testing and get the answer.
Actually, Peripheral Neuropathy "can" be its own diagnosis. It is NOT necessarily a wastecan diagnosis. There are disorders, like Chronic Inflammatory Demyelinating Polyradiculopathy or Marie-Charcot-ToothDisease, (and another several dozen) that are disorders solely of peripheral nerve disease. I can give you a page that lists most of the known ones.
Many other times the PN is "secondary" to another process such as a deficiency, a metabolic problem (like diabetes), a hormonal problem, an infection, heavy metal poisoning and so on. When PN is found they need to do the further workup to see if a cause can be determined. When all peripheral neuropathy is considered idiopathic and just treated symptomatically, I do think the doctors are not doing their full duty and are treating it like a "wastecan diagnosis."
But, be very clear that the PN is sometimes a disorder all in and of itself.
I will be praying that your doctor is on the right track. If it's peripheral neuropathy I'm pray he finds the underlying cause (if there is one).
My step-grandfather had Marie-Charcot-Tooth Disease which looked to me very much like MS. I can see how it is one of the mimics.
This is one of the diseases that I thought I may have, because I have hypothyroidism (before my MS diagnosis). It's still unclear whether or not some of my symptoms may have been due to peripheral neuropathy or the MS--because I've not had nerve conduction testing. However, I guess it no longer matters since I'm being treated for both MS and hypothyroidism??? This will be something that I'll bring up to my neurologist.
Anyway, I hope the Neurontin helps you, you get a more specific diagnosis, and/or find the underlying cause of the problem.
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