This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all.

I have been reading about the several methods for "treating" spasticity. I have some questions that would like to ask all of you who experience this symptom.

Spasticity interferes with mobility. Anti-spasticity drugs cause weakness, due to their mechanism of action. Spasticity impairs mobility, anti-spasticity drugs impair mobility through their action. Have you found them of any use, in terms of mobility? I consider the brain who had the idea of adding weakness to spasticity sick.

Does this symptom ever improve in relapsing MS? I consider that it does not, but my neurologist has a different opinion. AFAIK, spasticity is caused by the inability of the brain cortex to send inhibitory signals to the lower levels of the spinal cord, which control reflexes. This inability may exist because of 3 reasons:

1. The axon is damaged.
2. The axon has been demyelinated, so incapable of transporting high frequency signals, which the inhibitory are.
3. Inflammation causes swelling which presses the cord and prevents successfull synapses from happening.

1 and 2 are irreversible. 3 is only somewhat reversible. How can spasticity improve?

Some use physical therapy for spasticity management. My opinion is that it costs a ton of effort and money and leads to hardly a gram of effectiveness. I can't imagine how it can affect any of the 3 conditions above. Is it useful in MS and spasticity management? (for the patient, not the "therapist")

I was attending a speech therapy lesson. We were shown some videos of a woman with MS having trouble swallowing and speaking. I asked about how useful could speech therapy be for this woman, since we can't train the pharyngeal nerve. The professor just moved her head, embarrassed by such a question, and replied that we just can't let her.

"Of course we can't let her go without taking her money first, through torturing her even more and giving her false hope!", I said. This fired a long discussion about morals etc but objectively leading to my very first conclusion.

Sorry about sounding so cynical, but I think ourselves being laid on a table and several doctors/"therapists" sit around, holding forks and feast with our bodies. Of course, they discuss about how progressed our medical science is, while there are some dogs around waiting to have a piece of meat and some vultures waiting to feast on the remains.

sou

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Sou...
I've really appreciated reading your thoughts and observations. You are asking alot of important questions. My husband dealt with serious spasticity and clonus in his legs after his first flare two years ago. Lots of pain, involuntary jerking and trouble walking and sleeping. I came to these boards looking for help for him. He dealt with it using exercise and many supplements, especially magnesium. He tossed out the baclofen, since it made him more fatigued. He would tell you that there is hope thru physical therapy and rehabilitation. He would also suggest you read books on neuroplasticity...his new buzz word. He loves Norman Doidge's book, The Brain that Changes Itself.

more on neuroplasticity in MS
He is so much better today, and although he still has pain by the end of the day, his clonus is much better, and he's mountain biking longer and further than he ever has prior to diagnosis. Granted, his was never completely incapacitated by his MS. Everyone is different and has varying levels of disability, but after watching his experience, I think physical therapy and exercise might be helpful for spasticity.
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hi.

I agree that the brain is very capable of rewiring through damaged areas, but I don't think that this is the case with the spinal cord. There is lack of space and lack of spare neurons, while molecular exchange is extremely difficult there.

I currently read Jock Murray's book about the history of MS. I like his comments very much. He consider MS as a disease of "fashion". When bacteria were firstly discovered it was attributed to some bacterial infections. When viruses were discovered it was attributed to some unknown virus. Then, at the age of immunology, it was considered as autoimmune. Now that we are at the age of genomics, it is starting to have a genetic cause, too. Perhaps our emerging knowledge about prions and the introduction of metabolomics could lead the MS cause into a new age. This is both funny and tragic at the same time.

Anyway, thank you very much for your coments.

sou

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

i had quite noticeable spasticity in legs and arms, plus major problems breathing and swallowing and felt like i had a tennis ball stuck in my throat. all my spit always went down the wrong way and i couldn't clear my throat no matter what. i went for a chest x-ray and chanced to pop in to a pharmacist on the way out, who suggested magnesium and it turned me around amazingly. went to a speech therapist and i washed out magnesium intentionally so my throat would be really bad. he told me that my throat problems were in my head and gave me a behaviour modification protocol to stop clearing my throat. anyway, i'm sure that physical therapy can have some benefits, but don't forget to talk to a smart pharmacist too!!!

Sou I have a friend whos father has MS for more than 25 years.
He passed from various stages almost disabled with huge mobility, swelling, spasticity and other problems those years, believe it or not he is in very good condition now, not completely healed but his walking, speaking and other abilities are really good and rarely experiences spasticity, what he told me is that MS is a brain illness meaning you can control more than 50% of it through your mind!
My wife PwRRMS since first months of 2007 has had more than 20 lessions in brain and spinal cord (if I remember right more than 6 in spinal cord) and major relapses the first months before and after diagnosis although she is very well now, no walking-spasticity-numbness or other problems except when she is cold or the first-second day of her menstrual cycle.
I don't believe the theory about spinal cord not having some plasticity, for example xanthones, substances of mango and polygala herb increase by more than 5-6 times spinal cord repair according to some researches and I am sure we will find more ways to improve it in the future.

My wife isn't optimistic enough about her life after MS diagnosis although I do my best to keep it health - and she really is very well (EDSS~0) - I believe this is THE problem and not the MS itself so don't stop your hopes!


PS: IMHO healthy life with plenty of supplements, BBD, LDN, exercise with vibro machine (it stimulates spinal cord repair) are the reason for her situation!

Hi.

Thank you for yor replies.

You are right. My dogma is that the worst symptom of MS are the people who have no idea of the disease (of course not you at this forum who are very well informed) and keep suggesting their "methods". You can't imagine what I have heard!

I can't understand how can a damaged axon transduce the signal when you think positive and not transduce it when you think negative. Perhaps I am a technocratic, super-materialistic, dogmatic ass, who only accepts what has a cause and an explanation.

I do take LDN and several supplements, including 500mg magnesium. I am also on a gluten free and very low fat diet. In my experience, these are the only methods that seem to work. I have tried the interferons but
did not seem to be of any real help. On the contrary, they made me feel even sicker than I already was.

I am also very pessimistic about my future, too. Actually, I don't think I have any. I feel like I am just an observer of life and not an active member of it. May be the depression, may be not.

Thank you all very much for your suggestions!

sou

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

sou....
there are probably 2 distinct camps I've seen on this forum.
1. I am a victim, doctors are evil tormentors, there is no hope, I will die alone.
2. I hurt, I need help, I believe those around me care about me, I will do what I can each day for myself.
Choosing a camp is up to you. This part IS controlled by the mind. I have seen people with no disability in camp 1, and bed-ridden patients in camp 2. It's about something more than disease or depression.

People who offer advice do so because they care (see, already you're becoming a member of camp 2). Coming to these forums is a way to get support and ask for help. Dmitris and I are both caretakers, and even though Jimmy has MS, she is a caretaker at heart. We respond to you because something in your posts is reaching out.

Yes, you obviously have a very keen intellect. You understand your disease better than any doctor who will ever treat you, or any caretaker or patient on this forum. But this does not preclude you from hope or action. We need fine minds here.
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

...let me ask you Sou how do you know your axons are damaged and not partially demyelinated?
About how mentality affects physical situation read this research with mices, remember these are mices:

http://www.ncbi.nlm.nih.gov/pubmed/18555617

Iron is close related with demyelination and axon damage in MS!

WOW..good topic.
I can tell you I have suffered some icky pain and other junk
I threw out the Baclofen, Zanaflex, Neurontin..all that stuff and I no longer take shots..been a little over 6 mos now.

So............Jimmy Legs..a member of this forum....told me about some powdered magnesium called "Nature Calm"

I started to use it about 3 days ago. Yesterday I as really sick...bad day...

TODAY..I got up...fully expecting pain and tightness...and I had none. I have a bad right leg which may be an injury due to a fall which I will be seeing a doc for last week

But I can tell you my legs overall feel better and so do it. That's only 3 days of taking this stuff......

The doctors shrugged me off when I mentioned it but its working for me!!!!

( Thanks Jimmylegs..if you see this)

It's worth a shot.

I play the games with those other meds..they made me loopy, foggy minded, lethargic, and more fatigued..as if we need MORE fatigue...

Good Luck

Hi.

Ok, DIM. Let's assume that the axon is intact but lacks myelin. Myelin is a substance that allows signals to travel with very high speed along the axon. If the axons were not myelinated, they would have to be several millimeters thick in order to operate normally. But if they were, our brains would have to be several cubic meters in size, perhaps larger.

Neurons are somewhat "digital". They can not produce signals of variable voltage in their output. Instead, they communicate using frequency. Maximum frequency is about 1 kHz and myelin allows them to go that high. Even if the axon is somewhat demyelinated, it is more than enough to reduce the maximum frequency from 1 kHz to below 500 Hz, or even less. This results in a very severe distortion of the signal itself which leads to distortion in "command information" from the brain.

Practically speaking, a damaged axon is an axon that can not properly carry signals. Spasticity will be ameliorated only if the communication between the brain and the lower motor neurons is restored. This can not happen, unless the axons can carry signals once again. But this is impossible.

DIM, the paper you are pointing to about iron deposition in the CNS and psychological stress in rats is very interesting. But I am wondering, how did they manage to stress them? Did they expose them to cats or something?

sou

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

http://archneur.ama-assn.org/cgi/content/full/58/1/65

Brain plasticity and sodium channel redistribution can make up for axonal damage. Axonal damage does not necessarily correlate with disability. Acute axonal loss has been shown in patients with no disability .
We already know that the amount of lesions shown on MRI has no correlation to disability...and now we know that axonal loss shown on MRI also has no correlation to disability.

You've read my posits on endothelial dysfunction and the vasculature, so I won't go on....but I personally believe disability in MS is less about axons and more about venous insufficiency. Many people have found relief from spasticity with magnesium supplementation (natural calm is the one Jeff uses) dietary changes, exercise and physical therapy.
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

.

Hi AC.

Your PDF and Zamboni's study have inspired me to question everything I have read so far about MS and the nervous system. I have never been a fan of the proof-pending autoimmune dogma and the vasoconstriction theory quite fits.

Here is a post by somebody called Bob, claiming to be a healthcare teacher. I don't think there are any reasons for not believing his claim.

http://forum.neurologychannel.com/hc-fo ... 39496.html

Perhaps, it should be posted to the CCSVI thread. It is a very interesting point of view.

sou

PS for the moderators: How do I enter shortened URLs? Does the underlying phpBB engine do this automagically?

_________________
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Hey Bob-
Here's the timetable...Ever since diagnosis in '07, I was asking questions about my husband's blood. So many weird test results. He had liver issues, hypercoagulation, low lymphs, high ESR, petechia on his legs. We tested for Lyme, cpn, infections and we found nothing. That's when I got way into supplements with Jimmy and others on here. Saw great results for Jeff, stabilization of his MS and blood, and began to research more about the vascular/MS connections. His neuro didn't agree, but said she couldn't object, because he had stabilized, and was actually healing and doing well. She just shrugged her shoulders.

By last summer, I had the endothelial program together for Jeff, and wrote it down and posted it online last fall. It's on a hosting site...not sure if you read it? I sent it to a few vascular docs, and got some great response. (One doc is at Stanford, and we'll see him next month for venous insufficiency doppler tests.) I then found F.A. Schelling's work online in Nov., and read all his research. When dignan posted Zamboni's research last month, it was the puzzle piece I'd been looking for. A physical manifestation of vascular issues for MS patients. I realize we're w-a-a-y early in all of this, but since you asked, that's been the thought process. Obviously, axonal loss and demyelination is part of disability in MS. But it's not all of it, or immune modulating medications would be much more successful. I'm interested in what begins this process, and I think it's in the blood.
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Bob the "health care teacher" is looking for an over-arching theory for MS, as many of us have been asking the same questions. Seems like he's following the endothelial dysfunction clues to problems in the vascular system. Very interesting. Thanks for posting, sou. Hope you find more answers, too.
Here's how to shorten links...scroll down to mid-page, and there are instructions on how to write the code. It's easy, even I learned how!
http://www.thisisms.com/ftopict-5284.html
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS