Anyone with multiple sclerosis, peripheral neuropathy?

[kirsten]

I had a doctor's appointment yesterday and was told that I have far too many MS symptoms so I have to have an MRI. I had an MRI 18 years ago when I was first diagnosed with temporal lobe epilepsy and that came out clear but I had an abnormal EMG. No conclusions were drawn from that result. It has been a long time and I have since developed a rapidly declining peripheral neuropathy with fugue states and cognitive dulling. Occam's razor says the simplest explanation is probably the correct one--which would mean that my symptoms are, surely, most likely to be epilepsy related, which makes me wonder what the point is of an MRI and investigations into such a scary diagnosis. This has generated a lot of stress for me, so I was wondering whether we had any members who have epilepsy as well as multiple sclerosis, or epilepsy with peripheral neuropathy where other causes besides epilepsy have been ruled out? Or if anyone had information about MS presenting as temporal lobe seizures that were not caused by epilepsy? My holter scan definitely showed where my focus is. Does that make it certain that my seizures are epilepsy-related?

 

[Nakamova]

Hi kirsten, sorry you have this diagnosis hanging over you. I hope the docs are just being extra-vigilant in ruling MS out. It is possible for seizures to be one symptom of MS, though it's not well-understood why this correlation exists -- they think perhaps due to lesions in the brain associated with MS -- but it would be very unusual for MS-related seizures to manifest 18 years prior to the MS itself.

The other markers required for an MS diagnosis are:

1. Two separate episodes of neurological symptoms-such as weakness or clumsiness, vision problems, tingling or numbness, or balance problems-that a neurologist can verify. Each episode must have lasted at least 24 hours and occurred at different times at least 1 month apart.
2. Symptoms that indicate injury to more than one part of the central nervous system, and MRI and laboratory tests that show abnormal findings consistent with a diagnosis of MS.
3. No other disease or condition that is clearly causing the symptoms and test results.

It doesn't sound like you fit these criteria. As you say, the obvious diagnosis is epilepsy.
As for peripheral neuropathy -- it can be caused by some AEDs -- any chance this is a factor for you? Have they definitely ruled out all other causes (like diabetes, Lyme, or B12 deficiency)?

Keep us posted about the MRI.

 

[kirsten]

I'm going to the neurologist on the 29th of this month. The keppra I started taking six months ago stopped the neuropathy for a couple of months but now it has started again despite still being on the same AED, and now it's getting worse. I have taken three different AEDs over the last couple of years and the neuropathy has not been affected by any but my current med, so it doesn't seem to be caused by the drugs themselves. Thank you for the info. I shall let you know what happens.

 

[JaneC]

Hi Kirsten, Nak is right (she always is lol), for the seizures to be MS-related but come along years before the MS itself would be a bit backward.

Can I ask what these symptoms are that your doctor thinks might be MS-related? There are a lot of things that are mimicked by other conditions. Fugue states don't ring a bell with me at all in relation to MS and peripheral neuropathy isn't generally considered to be linked either (although there are studies which have suggested a connection) - as I understand MS is usually confined to the central nervous system.

I use this CWE because my daughter has epilepsy. However, my husband and three members of his family have MS x

 

[kirsten]

From the symptoms lists I've read, peripheral neuropathy is one of the MS symptoms in about half of patients. Are you perhaps confusing MS with ME? The other symptoms my doc is concerned about are clumsiness, memory loss and cognitive dulling. The fugue states are actually break through seizures according to the doctor.

 

[Wobblez]

Hi Kirsten,

I don't really have any info to offer you but i just wanted to welcome you to the CWE and wish you the best of luck in securing a final diagnosis, and hopefully a manageable one!

 

[JaneC]

Kirsten, I'm sure you didn't intend it but I'm a little insulted. My husband was diagnosed with MS (multiple sclerosis) 14 years ago, a little after his younger brother and a little before his twin brother and one of his older sisters. Just for good measure I developed ME (the other thing) in 2007, so I do have a pretty firm grasp of which is which.

I stand by what I said above. A couple of studies have found PN in a high proportion of people with MS and who knows maybe they will be proved right but at the moment PN is deemed not typical in MS.

Good luck in getting to the bottom of your problems. An MRI might help to do that.

 

[kirsten]

That is good to know, then, Jane, because really, the primary problem that brought this into focus was peripheral neuropathy. If it's atypical of MS, I guess I don't need to be frightened about what the MRI will turn up. Sorry you were insulted. I really didn't intend to imply anything.

 

[Keith]

This new study shows leaky gut (increased intestinal permeability) precedes onset of MS and supports disease progression including encephalomyelitis.
Intestinal Barrier Dysfunction Develops at the Onset of Experimental Autoimmune Encephalomyelitis, and Can Be Induced by Adoptive Transfer of Auto-Reactive T Cells
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0106335

Here's a blog review of the study for easier reading:
Which comes first: the leaky gut or the dysfunctional immune system?
http://www.thepaleomom.com/2014/09/comes-first-leaky-gut-dysfunctional-immune-system.html

Encephalomyelitis is inflammation of the brain and spinal cord where brain inflammation initiates seizure.
Brain inflammation initiates seizures
http://www.nature.com/nm/journal/v14/n12/full/nm1208-1309.html

A leaky gut can cause a leaky blood-brain barrier leading to brain inflammation.

People are repairing their leaky guts through proper diet and curing themselves of MS. And there are many ways to approach healing of a leaky gut including:
1) weeding = antimicrobials
2) seeding = probiotics and fermented foods
3) feeding = prebiotics and high fiber diets including the right forms of resistant starch

The new study details how the immune system attacks both gut lining and brain and how other studies show microbiota trigger autoimmune disorder.

I believe the study also paints a picture of vaccine injury and a mechanism for how vaccination can be a cause of autism and epilepsy.

 

[Keith]

I notice kirsten's account is closed, so if anyone here has contact with her, please forward this information to her.

And I want to be clear that I believe this new study doesn't only apply to MS, but is a very general description of how a leaky gut leads to leaky brain where brain inflammation is associated with lesions and demyelination.
Cortical Lesions in Multiple Sclerosis
Inflammation versus Neurodegeneration
http://www.medscape.com/viewarticle/773247

Why and how this progressive degeneration occurs needs to be understood, so that therapies can be developed to prevent it. Furthermore, if subsequent research proves that progressive neurodegeneration is set in motion when a threshold amount of neuron loss is crossed, it will be important to seek new therapies that can be taken over the long-term and can halt inflammation early in the disease, long before this critical threshold is reached.

Nerve Fibers are Severed by Inflammation in MS Lesions, Leading to Permanent Disabilities
http://www.unitedspinal.org/msscene...ms-lesions-leading-to-permanent-disabilities/

The "new therapies" should obviously be focused on the gut-brain.

 

[Keith]

This 2011 Max Planck study which is a reference in the new study illustrates how "normal" commensal gut microbiota stimulate the immune system leading to brain inflammation:
http://www.sciencedaily.com/releases/2011/10/111027112520.htm
http://www.nature.com/nature/journal/v479/n7374/full/nature10554.html

Here's the full paper:
http://immunologie.charite.de/filea.../Berer_et_al__Microbiota__EAE_Nature_2011.pdf

Terry Wahls has developed a protocol to beat MS naturally through diet which shifts flora in the right direction:
http://terrywahls.com/
http://terrywahls.com/your-gut-and-autoimmune-disease/

 

[epileric]

Terry Wahls has developed a protocol to beat MS naturally through diet which shifts flora in the right direction:
http://terrywahls.com/
http://terrywahls.com/your-gut-and-autoimmune-disease/

Keith, Terry Wahls is a notorious for basing all her claims on nothing more than her own personal experience when from what she describes it's most likely she was misdiagnosed. Let's see what a real neurologist has to say about her. I suggest you read the whole article as he makes very good sense as to why Ms. Wahls should not be taken seriously.

A number of people have sent me links to this opinion piece, and other articles about Dr. Terry Wahls, who claims to have cured her own multiple sclerosis (MS) with diet alone. She advocates a paleo-style diet to cure whatever ails you. The evidence for this claim – zippo.

http://theness.com/neurologicablog/index.php/can-diet-cure-ms/#more-6531


Keith, of all that you've flooded this thread with, that was about the closest you've come to staying on topic. I know you feel the gut-brain theory explains everything but please don't hijack this or any other thread as you've done with others before.

 

[Keith]

Earlier this year this story made headlines:
Multiple sclerosis 'linked to food bug'
http://www.bbc.com/news/health-25925658
http://www.medicalnewstoday.com/articles/267676.php
http://weill.cornell.edu/news/pr/20...s-a-potential-multiple-sclerosis-trigger.html
http://www.sciencedaily.com/releases/2014/01/140128153940.htm
http://www.foodqualitynews.com/Indu...-perfringens-could-trigger-multiple-sclerosis
http://www.asm.org/index.php/commun...in-a-potential-trigger-for-multiple-sclerosis

“We provide evidence that supports epsilon toxin’s ability to cause BBB permeability and show that epsilon toxin kills the brain’s myelin producing cells, oligodendrocytes; the same cells that die in MS lesions,” says Jennifer Linden of Weill Cornell Medical College, who presented the research. “We also show that epsilon toxin targets other cells types associated with MS inflammation such as the retinal vascular and meningeal cells. Epsilon toxin may be responsible for triggering MS.”

It's a continuation of research about clostridium bacteria toxins of gut origin as cause of MS including brain lesions. Here's the full recent study:
Isolation of Clostridium perfringens Type B in an Individual at First Clinical Presentation of Multiple Sclerosis Provides Clues for Environmental Triggers of the Disease
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0076359

These same clostridium toxins are also a known cause of seizure:
Clostridium perfringens epsilon toxin causes excessive release of glutamate in the mouse hippocampus.
http://www.ncbi.nlm.nih.gov/pubmed/10913875

Eric, surely you're not saying the most exciting area of science today, the gut and gut-brain connection, are not worthy of attention on an important epilepsy forum.

 

[Shelley]

keith, not everything is related to leaky gut.
Your constant bombardment of links is not helpful

 

[Tez_20]

I had a doctor's appointment yesterday and was told that I have far too many MS symptoms so I have to have an MRI. I had an MRI 18 years ago when I was first diagnosed with temporal lobe epilepsy and that came out clear but I had an abnormal EMG. No conclusions were drawn from that result. It has been a long time and I have since developed a rapidly declining peripheral neuropathy with fugue states and cognitive dulling. Occam's razor says the simplest explanation is probably the correct one--which would mean that my symptoms are, surely, most likely to be epilepsy related, which makes me wonder what the point is of an MRI and investigations into such a scary diagnosis. This has generated a lot of stress for me, so I was wondering whether we had any members who have epilepsy as well as multiple sclerosis, or epilepsy with peripheral neuropathy where other causes besides epilepsy have been ruled out? Or if anyone had information about MS presenting as temporal lobe seizures that were not caused by epilepsy? My holter scan definitely showed where my focus is. Does that make it certain that my seizures are epilepsy-related?

Hi Kirsten,

I have temporal lobe epilepsy besides nerve damage and also Muscle Atrophy which can lead to MS but all mine stem from Lupus inherited from a child.
To put your mind at rest i'd ask about seeing a rheumatologist and getting tested for any autoimmune disease being present...as Lupus and sjogrens alone as caused me many issues over the years and I know MRIs can be scary and what may show but it's the best thing to have to make sure.

 

[MAB]

I'm going to the neurologist on the 29th of this month. The keppra I started taking six months ago stopped the neuropathy for a couple of months but now it has started again despite still being on the same AED, and now it's getting worse. I have taken three different AEDs over the last couple of years and the neuropathy has not been affected by any but my current med, so it doesn't seem to be caused by the drugs themselves. Thank you for the info. I shall let you know what happens.

Please try a good quality curcumin for the neuropathy. Even my neuro recommends it. She suggested a double dose.

 

[MAB]

I had a doctor's appointment yesterday and was told that I have far too many MS symptoms so I have to have an MRI. I had an MRI 18 years ago when I was first diagnosed with temporal lobe epilepsy and that came out clear but I had an abnormal EMG. No conclusions were drawn from that result. It has been a long time and I have since developed a rapidly declining peripheral neuropathy with fugue states and cognitive dulling. Occam's razor says the simplest explanation is probably the correct one--which would mean that my symptoms are, surely, most likely to be epilepsy related, which makes me wonder what the point is of an MRI and investigations into such a scary diagnosis. This has generated a lot of stress for me, so I was wondering whether we had any members who have epilepsy as well as multiple sclerosis, or epilepsy with peripheral neuropathy where other causes besides epilepsy have been ruled out? Or if anyone had information about MS presenting as temporal lobe seizures that were not caused by epilepsy? My holter scan definitely showed where my focus is. Does that make it certain that my seizures are epilepsy-related?

I was sure I had MS before I got the DX of SP"s.

 

[Tez_20]

I was sure I had MS before I got the DX of SP"s.

:agree: with what you've said...as so many issues get your mind thinking the worst.

 

[MaryK]

I think it is important to note that Kirsten is no longer a member.

Keith anyone can spend time reading about leaky gut and posting hundreds of links. It may be harder for you to understand as you do not have epilepsy or have a relative or friend with epilepsy. Over the years I have learned how some people are actually quite intrigued with anything to do with the brain. Probably most of us with epilepsy have had a young ER physician more interested in our seizures than our earache or whatever we went to the ER for!

This forum is all about support for those of us with epilepsy, newly diagnosed, diagnosed years ago, and their spouses, moms, dads, siblings, and everyone who loves us. Some of us are thankful to get through a day without a seizure or get our license back. I have posted an occasional link to a news item regarding epilepsy and maybe "occasional" is the key word here. It is wonderful to help someone newly diagnosed with a few tips or hear how others are doing on a particular drug.

Also, Bernard closed down your leaky gut thread, but you have found a way to begin posting countless links again, some of which talk about your opinion regarding autism/vaccination. As I have stated before, my grandson's pediatrician feels it is his most important role as a doctor to make sure his patients are vaccinated. Your info regarding this is very misleading and frightening.

Eric, surely you're not saying the most exciting area of science today, the gut and gut-brain connection, are not worthy of attention on an important epilepsy forum.

Keith, the above quote from you to Epileric is beyond condescending. Remember it is YOUR opinion that the gut-brain is the most exciting area of science today. I am sure there are thousands of scientists who would disagree.

On a personal note, my family's journey with epilepsy began over 56 years ago. We read, we prayed, and we cried. My mother was an unbelievable advocate/warrior for epilepsy. What we did not have though was this very forum way back then. What an opportunity we have to encourage others, offer hope, and acceptance. My hope is this forum will continue in this same vein.

 

[Shelley]

Many conditions we have (Aspergers, Epilepsy, MS, AS, etc.) predate processed food and vaccines.
While nobody minds a neuro-typical being a part of our forum family, we do mind being lectured to about one possible aspect of our lives.
Please consider your bombardment of ideas, and temper them to an intelligent, experienced group of people.