Returned to Neuro today

[Ndobbins]

No answers. Neuro told me the neuroapthy is irreversible. The MRI showed what she called insignificant changes. She said MS doesn't cause  neuroapthy???? Is that correct? I am having
more tingling all over my body & told her! She ordered a spinal tap for Monday. I dread that!

Good news is no diabetes or thyroid problems. Still monitoring B-12 levels.

Does anyone know if Metanx can help non-diabetics?

Needles to say, I cried a lot today! Gotta stop that!

Thanks,
A Frustrated Nancy

[kwarendorf]

Any thoughts?

[kwarendorf]

I'm not much help with peripheral neuropathy, but I want to let you know that the thread to which you posted is about 18 months old. Supermum is still here so she may respond.

Kyle

[sheena112327]

Hi supermum_ms, My name is Sheena and I was diagnosed with IPPN in 2004 it started with the stocking/glove feeling in both hands and feet and started up the legs and arms (about 3/4) all I can say about that is I learned to live with the pain...with some use of pain meds and the demon Lyrica I am now off of thank god. In Feb of 2011 I got sick and have not recovered...it started with total weakness and fatigue, then my eyes, nostrils, ear canals, teeth and jaw bone as well. I also had a small patch between my shoulder blades and the top of my head that if the temp. got below 78 degrees I could tell you. It took me 10 months to find a Neurologist with a patient with the same symtomoligy as me. He diagnosed me with Trigeminal Neuralgia/Dysfunction. Unfortunately I also at the same time was going through Chemo for breast CA Her2 pos, Estrogen pos, Progesterone pos and given HTC (chemo) it took my neuropathy to a level of pain and also gave me new neuropathy's in my trunk (like someone threw a hand full of insulation on me if I get even slightly warm) So I am dealing with pain and parts of my body that need to be kept warm and some that need to be kept cool.

My question to you is there any correlation between Neuropathy and Trigeminal Neuralgia? I am at my witts end I went from Dr to Dr with the cold eyes and was told I was nuts....I even asked if I had cancer because I was loosing weight while taking the steroids they were giving me (was on them once before bit by black widow spider and gained 15 pounds in 10 days) because I did have a pos ANA and ESR and then when ran again they were NEG????? well I was assured I did not have cancer...well I found my own breast CA. Still not sure if Diagnosis is correct My medical Dr says with all that I have going on she is not  content with the dx but she is not a neuro.  I have lost sensation in my feet and half of my hands and the pain is sometimes unbearable. But I keep on trucking....... I get excited when I cut or burn myself and can see the reason for the pain (not a freak, don't do it on purpose).
Please give me some insight....You seem very knowledgeable.
SORRY for any misspellings.

Sheena
***@****

[Daveo08]

Hi Sheena

I to have this awful neuropathy all over my body from failed neck surgery. It's hard to keep going sometimes as the lack of sleep because it is worse at night grinds you down. No meds help. The doctors said it was all in my head which I know is not true. There must be a lot more sufferers out there. My whole life is consumed by looking for answers and dealing with the pain. It's only been a year and I can't remember what a normal life was like.

[essdipity]

Bumping this up in view of other thrreads discussing this and because Q planned to comment.

ess

[shoshin]

While we're waiting for Quix's expertise, I'll just throw in my two cents since everyone else is weighing in and I looked into peripheral neuropathy a bit since I was mis-dx'd with it for some years. So here's my take on the terms.

As we probably all know, in space, the nervous system is divided into the central nervous system (brain and spinal cord) and the peripheral nervous system (all the nerves that go out from the CNS into the body). These two separate systems are structured differently and each includes some different types of cells that aren't in the other. From what I can tell, the relationship between the CNS and PNS is not well understood. For some reason, very few diseases seem to affect both the PNS and the CNS.

Neuropathy seems like a general term, although it's often used as a synonym for peripheral neuropathy. MedlinePlus (http://www.merriam-webster.com/medlineplus/neuropathy) links to both a general neuropathy

"an abnormal and usually degenerative state of the nervous system or nerves ; also : a systemic condition (as muscular atrophy) that stems from a neuropathy"

and peripheral neuropathy

"a disease or degenerative state (as polyneuropathy) of the peripheral nerves in which motor, sensory, or vasomotor nerve fibers may be affected and which is marked by muscle weakness and atrophy, pain, and numbness"

It also seems to be used, as Nancy's neuro seems to be using it, to refer to paresthesias or dysesthesias (all those sensations that aren't really there, including neuropathic pain; see Quix's excellent HP at http://www.medhelp.org/tags/health_page/7687/Multiple-Sclerosis/Paresthesias---Things-That-Go-BUZZ-in-the-Night?hp_id=378) So I don't think it's really clear what Nancy's neuro is talking about.

As far as I know, you would feel the same sort of abnormal sensations from a problem in the CNS or in the PNS no matter where the signal got messed up so I'm not sure you can tell which is which based what it feels like, although I think the pattern of symptoms might give some clues.

There are various tests that can help tell where the problem is:

The EMG/NCS (electromyogram/nerve conduction study) looks at the large fiber peripheral nerves. This is usually normal in MS, unless there is an additional peripheral nerve problem (You can certainly have both MS and peripheral neuropathy, like Lulu does). Small fiber nerve problems don't show up on this test, but there are more recently-developed and not so widely-available tests for small fiber neuropathy (biopsy or a test based on measurements of sweating)

The SSEP (Somatosensory Evoked Potentials) measures the time and some other things about a sensory signal from input (shock) in the foot or hand to the point where the signal hits the border between the peripheral and central nervous systems and from there looks at how long it takes to reach the endpoint in the brain. This was the test that put me on the path to an MS dx because my signals were normal in the peripheral nervous system, but delayed or absent in reaching the brain when traveling through the CNS.

There has actually been some research on a possible relationship between MS and peripheral nerve problems, although I don't get the impression that MS is generally thought to cause peripheral neuropathy. A recent study (http://www.ncbi.nlm.nih.gov/pubmed/20629712) found that "SNC [large fiber PNS] abnormalities were observed in 29.6% of all [MS] patients and 14.2% of all nerves examined. No abnormalities on PREP [small fiber PNS] were found. Conclusions/Relevance: We demonstrated subtle alterations on routine electrophysiological measurements in patients with MS without hints for small fibre pathology."

And "Multiple sclerosis (MS) is primarily a disease of the central nervous system. Although the involvement of the peripheral nervous system in MS was suggested over 100 years ago, the issue is still controversial, and it is generally accepted that except for the optic nerve the peripheral nerves are left unaffected by the disease." (http://www.ncbi.nlm.nih.gov/pubmed/19155142) They go on to suggest some possibilities for testing this.

FWIW.

sho

[Quixotic1]

What an interesting discussion.  I think the problem here is in definitions.  I need to read the whole thread carefully, but I will do this and get back ASAP - probably this weekend.  I think everybody is right with a few tweaks.

Quix

[COBOB]

Peripheral Neuropathy can be "A"  cause of neuropathic pain, so can MS and Phantom Limb Syndrome, Neuromoas, Herniated Disks, etc.  Neuropathic Pain is a symptom (Subjective.)  Decreased Conduction Velocity on an NCS is a Sign (evidence based fact.) Peripheral Neuropathy is a diagnosis.  Demyelinating Disease Not Otherwise Specified is a diagnosis.  MS is a diagnosis.  

Typically, clinicians  start with the subjective symptoms and complaints, do an exam to disclose the objective signs, come up with an assessment, then develop a plan.  That plan may include more tests (MRI, LP, LABS) used to to gather more signs.  They take that additional data and refine the assessment and the plan.  The idea is to keep moving towards a diagnosis.

If you want to see an example, most Dr. notes look something like:
S:
O:
A:
P:
Sometimes folks "cheat" and treat the symptoms which may or may not changes the facts (the objective signs) without a diagnosis.  In that case, the illogic is no symptom, not problem.   Not a bit of truth to that one.  

Sorry,  Long winded, but words matter here.  They matter even more to our insurance companies (so do the correct ICD--CM codes.)

Bob

[twopack]

msologist -- I LOVE this term!!  Now I know what to call Dr. Tim, who is an internist but not a neurologist and MS specialist who's practice is limited to patients with MS exclusively.

90 minutes on the repeat EMG alone?  ugh, ouck, ouch, yuck, oweeee, on-on-on-anon
I've had a few of these and hated every one because my sensation was/is essentially intact.  One showed some radiculopathy from facet arthritis and that's it.  I can tell you this.  The docs would have never hovered over me once they caught on to my hyperreflexia!  Guess this is truly where the term knee jerk reaction comes from :)

Mary

[essdipity]

I should have said that TN is caused by a lesion on a nerve that leaves the brainstem, not on the brainstem.

[essdipity]

Bob is distinguishing between neuropathy and neuropathic pain. I'm not sure there is a difference, but would like to learn more. I do think that CNS neuropathy is a valid designation.

Small fiber neuropathy is a type of peripheral neuropathy, and thus is not MS. Of course, the two can co-exist. I have it in my feet.

The quotation above describing TN as a type of PN has got to be wrong. In MS, TN is caused by a lesion on the brainstem, which is considered part of the CNS. That the pain is felt in the face is beside the point.  Pain or other sensations originating in the CNS cause problems all over, and that's what MS is.

ess

[Lulu54]

Wake up, Nancy! It's Friday afternoon and the day is almost over and the same for the week if you do Monday through Friday.

As for the discussion, there is lots of great information above and can be difficult to sort out.  Peripheral neuropathy is not related to MS. The use of the term neuropathy can be very confusing and you do need that adjective to know which one we should discuss.

I have Ms.  I have PN.  The EMG on my leg that is affected by both confused the heck out of the doctors running those test, not once but twice to decide what they were really seeing.

My msologist saw the first results, said he couldn't decipher what it meant and ordered a second round with different doctors.  The different docs kept me on the table for 90 minutes or so, because they couldn't quite decide what they were seeing, either.  They sent out for another doctor or two to come in and also test me. There ended up being multiple doctors testing me and reading results and shaking their collective heads.   All I can say is its a good thing I have limited feeling in that leg, because neither EMG experiences bothered me with discomfort.

Now if this all doesn't put you to sleep, styart thinking about the end of your day and heading home!

be well, Lulu

[Ndobbins]

I need a nap! Sitting here on my lunch hour and almost fell asleep!

Thanks again for all of the info & words of encouragement. I went back & re-read all of your posts. You can tell that you all care. When you go thru something trying, you can tell those around you that care & understand.

I am going to make me a list of questions to take with me for my visit on Oct. 25 with her. I do think she's a good neuro.

Have any of you asked your neuro how many patients they have treated with MS? I just wonder how familiar she is with the illness.

Oh, my eyes are trying to close again! Time to get up & walk around some.

Thanks! Have a lovely day to you all!
Nancy

[twopack]

I forgot.  Yes, it's always a good idea to get copies of your MRI on CD and radiologist reports to add to your personal files.  With any chronic disease, it is probable that we will see a variety of doctors for treatment of various body systems or change primary physicians.  Having copies of the records can save time and money (no need to repeat tests or wait for office to office record transfer) when that happens.

It's also helpful to be able to verify accuracy of the information in our records.  But we need to resist the urge to self-diagnosis based on the records we receive.  The internet is a great place to learn but can't begin to compete with the education and experience of a trained physician.  Sometimes it's easy to dismiss all that when communication breaks down and we're feeling lost, rushed and unheard.

Mary

[twopack]

I believe you will have to go back to your neuro to find out exactly what she meant.  The term neuropathy is a broad one that refers to any disease of the nerves.  In that sense, MS doesn't cause neuropathy but is, in itself, neuropathy.

The word must be paired with a modifier to give any clue to it's origin (diabetic, small fiber, hepatic, peripheral, etc.).  MS is a disease of the CNS (central nervous system) so it is not peripheral (outside the CNS) even though the damage it does is perceived throughout the body.

Bob, you're on the mark with almost everything you said as far as I know.  There is however, SOME regeneration of peripheral nerves.  It is very slow.  Anyone have surgery and experience numbness or tingling that lasted a long time afterwards?  I had about 50-60% feeling back in the skin of my outer knee FIVE YEARS after the replacement.

I question the use of TN as an example of acquired peripheral neuropathy.  Since TN involves damage to a cranial nerve and is considered part of the CNS.  How does a nerve of the CNS count as PERIPHERAL at all?

The glial cell research is interesting and confirms my thought that there is some myelination in the peripheral nervous system.  I confess I didn't read it carefully, but it seems to say that the CNS and peripheral types aren't found 'interacting' or 'migrating' unless there is an abnormality to begin with.

Nancy, it's certainly possible (and very unfortunate) to be diagnosed with MS and also have  peripheral neuropathy caused by a different disease process.  I'd ask your neuro to clarify what she thinks is causing your symptoms.  Since she has ordered the LP, she may not be absolutely clear yet herself.  It sounds like she is still working on it?  At the usual neuro pace which is always slower than we would desire.

I think I'll see if Quix is up to scaning this question and clarifying all this for us.  Maybe she can at least give a Quick Quix thumbs up or thumbs down.

Mary

[COBOB]

I gets very confusing.  I have Neuropathic pain in my left shoulder, arm and hand that currently has no explanation.  I also have neuropathic pain in the 2nd and 3rd digit of my left hand that feels different from the other pain in my hand.  This pain can be reproduced by tapping on the middle of my anterior left rest.  An EMG/NCS confirmed that the reproducible pain in my hand is due to Carpal Tunnel Syndrome, but the EMG/NCS also confirmed that there is no peripheral cause from the nerve roots in my neck all the way down to my finger tips for the burning dysesthesia that effects my shoulder and arm.  The neurologist says that the two pains are due to unrelated disease processes.  The specific reproducible pain is Carpal Tunnel.  The generalized burning from the between the shoulder blades to the hand "Neuropathic Pain not associated with a peripheral cause."  

Bob  

[RedFlame]

Here are two links to health pages;

I am re-reading these

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Nerve-Neuropathic-Pain---A-Primer/show/371?cid=36

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Paresthesias---Things-That-Go-BUZZ-in-the-Night/show/378?cid=36

Red

[RedFlame]

How can we or our doctors distinguish between regular neuropathy or a demyelenation process.  

I had an emg and nerve conduction studies done recently.  One of the things found was neuropathy which is why I can't feel the gas or brake pedals in my car.   My doctor told me that neuropathy was a separate disease then the MS.

My neuropathy may be a result of extremely low levels of specific hormones like B12, vit D, thyroid etc. I don't know yet.

Other causes of neuropathy include trauma, infections, nerve and nerve root compression, toxins, Guillain Barre, Immune diseases, metabolic diseases, and diabetes.  

I am trying to figure this out too.

There have to be other members here with both MS and Neuropathy.  

Red

[COBOB]

Neuropathy is "damage to nerves in the peripheral nervous system."  Neuropathic pain is "pain arising as a direct consequence of a lesion or disease affecting the somatosensory system.   Neuropathic pain cannot be explained by a single disease process or a single specific location of damage."  Neuropathic pain was never the issue.  Peripheral. Skeletal and CNS damage can all be sources of neuropathic pain.  I read the research you presented, and at best, it is theoretical.  "However, migration across the border has never been observed directly, nor was there any evidence that oligodendrocytes can move in the opposite direction." (meaning CNS to Skeletal Nerves)   Damaged skeletal nerves might migrate to the CNS, but the reverse (CNS migrating to peripheral has never been observed.  "Past studies have hinted that Schwann cells can cross into the central nervous system after peripheral nerves near the border are damaged, or after central nerves lose their myelin sheath."  

This would be a huge jump to think CNS demyelination would effect small fibers in the hands and feet.  I would agree that there is a relationship between CNS demyelination and demyelination of cranial nerves (as in Trigeminal Neuralgia,) but I think this is a special case since cranial nerves are not skeletal nerve attached to the the spinal cord.  CN1 & CN2 are directly attached to the cerebrum (so any demyelination of cerebral white matter can directly act on CN1 & CN2 as in Optic Neuritis) and CN3 through CN12  are directly attached to the brain stem.

In MS(ICD-9 340, it seems like direct damage to the brain or spinal cord causes symptoms similar to what is seen in peripheral neuropathy, but are actually CNS in origin.  So as CNS structures remyelinate, normal feeling returns to the effected extremities.  So it looks like peripheral neuropathy, but is really CNS demyelination causing peripheral paresthesias and/or dysesthesias.  Peripheral Neuropathy is not a sign or symptom, it is a separate disease process (ICD-9 356).  Peripheral paresthesias and/or dysesthesias are well known symptoms associated with MS.  I would go as far as to say that demyelinating damage to the cranial nerves might be the exception where CNS damage this subset of peripheral nerves because of their direct connection (hence no "border" to cross as stated in you research) to the brain without the protection of skeletal nerves.

Bob

[Ndobbins]

Thank you all so much for your wonderful words of support & knowledge! I appreciate you all so much!

I feel as if I have a new family of friends here who know me & understand what I'm going thru!

I logged on tonight & immediately below my post is one from drsdontknow about buzzing in their left foot! They described in detail how my right foot feels intermittently except I was calling it skidding on ice!

Honestly, we know our own body better than tests & I hate to say it but do believe I have MS. It is ok & I just want to know that is what or what I am facing.

Thanks again for your kind words & wisdom.
Nancy

[supermum_ms]

This is more a reseach based explanation, there seems to be more research in the pipeworks so there might be something more resent, anyway its interesting.......

Glial cells can cross from the central to the peripheral nervous system  
Glial cells, which help neurons communicate with each other, can leave the central nervous system and cross into the peripheral nervous system to compensate for missing cells, according to new research in the Dec. 2 issue of The Journal of Neuroscience. The animal study contributes to researchers' basic understanding of how the two nervous systems develop and are maintained, which is essential for the effective treatment of diseases such as multiple sclerosis.

The nervous system is divided into the central nervous system (the brain and spinal cord) and the peripheral nervous system (sensory organs, muscles, and glands). A major difference between the systems is that each has its own type of glial cells. In a healthy body, glial cells are tightly segregated and aren't known to travel between the two systems. The peripheral nervous system also regenerates more than the central nervous system, due in part to its glial cells -- a characteristic that, if better understood, might be used to improve the regenerative capabilities of the central nervous system.

Glial cells serve nerve cells by insulating them with layers of fats and proteins called myelin. Myelin coatings are necessary for nerve signals to be transmitted normally; when the sheaths are lost, disorders involving impairment in sensation, movement and cognition such as multiple sclerosis or amyotrophic lateral sclerosis develop. Glial cells named oligodendrocytes produce myelin around nerves of the central nervous system, while those named Schwann cells make myelin that insulates peripheral nerves.

This study shows that in the absence of Schwann cells, oligodendrocytes migrate from the central nervous system along motor nerves and form myelin on peripheral nerves, indicating that glial cell movement across the border is controlled by a self-policing mechanism.

"Past studies have hinted that Schwann cells can cross into the central nervous system after peripheral nerves near the border are damaged, or after central nerves lose their myelin sheath," said Bruce Appel, PhD, of the University of Colorado Denver Anschutz Medical Campus, one of the study's authors. "However, migration across the border has never been observed directly, nor was there any evidence that oligodendrocytes can move in the opposite direction."

The authors used time-lapse video of mutant zebrafish to study the glial cell movement. Movies of translucent live zebrafish that lacked Schwann cells showed that oligodendrocytes left the central nervous system to wrap peripheral nerves with myelin -- effectively attempting to compensate for the missing Schwann cells.

"This new observation is not only relevant to normal nerve function, but also to potential causes of disease in the peripheral nervous system. We're still unsure as to exactly how foreign glial cells interact with the other system. Do they help heal or do they act as a toxin?" said Bruce Trapp, PhD, at the Cleveland Clinic, who is unaffiliated with the study. "Knowing the mechanisms that anatomically restrict peripheral and central nervous system glia could help develop therapies that treat or prevent certain nervous system diseases."

Appel and his colleagues said that future investigations are needed to determine how different glial cells communicate to restrict their movements between nervous systems, and whether oligodendrocyte myelin can fully substitute for Schwann cell myelin on motor nerves.

The research was supported by the National Institute of Neurological Disorders and Stroke and a zebrafish initiative funded by the Vanderbilt University Academic Venture Capital Fund.

Source: ScienceDaily © 1995-2009 ScienceDaily LLC (02/12/09)

Cheers............JJ

[supermum_ms]

I've got a few research papers on neuropathy, a few regarding MS central & peripheral nervous system conections, this is one from another MS web site that has research based information eg:


What is Neuropathic Pain?
Neuropathic or neurogenic pain differs from other types of pain because it is not caused by physical injury. However, nerves themselves can generate pain and this is a pain which doesn’t disappear very easily, if at all.

The term ‘Neuropathic Pain’ is derived from the Greek neuro, meaning nerves, and pathy, meaning abnormality. Pain like this without apparent cause also includes, itching, electrical shock sensations, prickling, tingling, or ‘pins and needles’ and patches or larger areas of skin with heightened sensitivity. It can be puzzling and frustrating and is usually chronic rather than acute which means that it’s a constant feature, although it may fluctuate in degrees depending on factors such as viral activity in the body, heat, stress or physical over-exertion. These are called Paresthesias.

Other neuropathic pains are Dysesthesias; they include a burning feeling, aching or girdling around the body e.g. The MS Hug.

With demyelination, the last sensation to be lost and the first to recover with healing is a dull, poorly localised burning dysesthesia. It is often described as a pain you’d feel after having just touched a hot stove in which there is a kind of ‘flare’ which has poorly defined boundaries, or again a small patch of bad sunburn. All these are often known to be worse at night thus hindering a good night’s sleep.

What causes Neuropathic Pain?

Most pain is felt when nerve endings, called nociceptors get nerve signals confused due to slowing down of nerve impulses caused by demyelination. We have millions of nociceptors throughout our bodies, probably about 1,300 per square inch of skin. Demyelinated axons may cause neural impulses to leak out and spread to other adjacent demyelinated fibres. If the adjacent fibres belong to the sensory pathway, these misdirected neural impulses give rise to pain.

I do have more if you want it, just let me know :-)

Cheers..........JJ

[COBOB]

I can agree with RedFlame that Peripheral Neuropathy may exist as a separate disease process, but it is not directly caused by MS.  

http://ms.about.com/od/glossary/g/perineuropathy.htm


Bob

[RedFlame]

oops---I just read the info above from supurmum ms.  

I guess MS can cause it.  I have been trying to figure this one out too.  I looked at the health pages and read the one on parasthesias but it didn't mention neuropathy.

Hopefully we will get this worked out.

Red

[RedFlame]

A person with MS may develop Peripheral Nueropathy due to severe deficiency in diet;  more specifically loss of B12 and vitamin D.  There is also a type of neuropathy that is demyelnating type.  

MS itself doesn't cause neuropathy, the deficiencies commonly found in patients with MS cause the neuropathy.  

Red