Spasticity in MS
So what actually is is spasticity and how does it affect people with multiple sclerosis?
I’d like to share this brilliant video by Dulci Hill (you can follow her brilliant video blog on Facebook here)
I thought it was a great an simple explanation of this symptom of multiple sclerosis. So please do share the video to help us raise MS awareness by sharing it with family and friends!
Thanks in advance!
Over the last few years we have covered the symptoms and treatments of multiple sclerosis in some detail.
Today we would like to turn our attention to the causes of multiple sclerosis and more specifically what you think are the causes of MS?
To that end we have set up a poll looking a some of the possible causes. Please choose which you consider to be the causes. You can select more than one.
Many thanks in advance!
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| Maygrelle | When I was a kid, our dog had a litter of puppies. There were four of us kids and four puppies. Until the pups went to their new homes, each of us kids got to claim and care for a puppy. After my puppy was sold, she came down with an unidentified illness that caused neurological symptoms. Her owner wrote to us detailing her symptoms. She eventually lost the use of her hind legs and was put down. Twenty years later, my sister and I were diagnosed with MS. After another 15 years, a 3rd sister is being evaluated for MS. Of the 3 of us, I, the one who spent the most time with that puppy, have by far the most serious course of the disease. I can’t help but think that whatever caused that dog to become ill might also be behind multiple sclerosis. I know that researchers have looked at, and ruled out, canine distemper. It’s not so far fetched to think that another canine virus might be to blame. |
| Rebecca2501 | I think I have always had it and the symptoms became more apparent after the trauma of the birth of my first child. |
| Cheryl12750 | I feel that I was born with MS. It just took until I was 24 to be diagnosed. That was over 40years ago. |
| BethWelchOkonczak | The predisposition of development of MS is within the HERV-W, a dormant retrovirus that has been embedded in between the 6th and 7th chromosome in human DNA since before we were humans. This retrovirus is activated via catalysts such as Mononucleosis, Strep, Epstein-Barr, Chicken Pox, and other viruses. Once activated, the virus will cause the lymph nodes to create abnormal and deformed proteins, such as fibrinogen which are small enough to leech through the blog brain barrier. These cause a reaction from the immune system and the white blood cells attack the myelin tissue. Additional genetic predispositions can complicate this. Allergies, dietary reactions, poor nutrition, lack of vitamin D, lack of exercise, ingestion of toxins like glyphosate, mercury, aspartame or fluoride, all contribute to the volitility of the MS response and the ability of the body to recover from a relapse. |
| fedupandconfused | Pertussis / whooping cough. Never been the same since 🙁 |
| LourdesRiveraMiranda | I sincerely believe that our immune system is healthy, but that it reacts to the agents that activate ms. For example vaccines, contaminated food and water. Then these reactions doctors called them Multiple Sclerosis. |
| BillyRiser | my vit d levels were very low, that i took 50,000iu 2 a week. til it got normal, but i had ms already. also heard it could be from mono, which i have had when i was a kid. |
| jesse | .
thanks!! |
| TeresaJane | Honestly, I believe that we are genetically predisposed to develop MS. Everything I read and my history of symptom relate back to something that makes us more prone to develop the disease. It has to start with a genetic factor. My mother has a lot of the symptom that I have had, although she was never tested for MS (no brain or spinal MRI for lesion, no spinal tap or any other MS related testing). She was diagnosed with DDD, arthritis, carpel tunnel syndrome and many nerve issues. She lives in chronic pain and has had multiple spinal surgeries. Her sister also has severe Rheumatoid arthritis. My father doesn’t seem to have nerve or spinal issues, but my youngest brother has undiagnosed issues. He is just too stubborn to see a Dr. I have a cousin who has been diagnosed with Lupus and possible MS on my father’s side. I grew up in a city that had heavy lead contamination at the time for a local “plant”. Which is now shut down, of course. There have been several people I grew up with who have developed MS or other rare autoimmune diseases. I had random neurological symptoms for about 11 years before I got “pink eye” while working as a school nurse. A month after that resolved I began losing my vision in the same eye (optic neuritis) and that lead to my diagnosis along with my history of undiagnosed symptom and MRI that also showed many “old” lesions. Wow… So, to sum it up, I truly believe it is a combination of genetic, environmental and immunological factors. We have to have all of the right components to trigger the disease which hides in our bodies. And from what I have read, that is how science sees it. Although they still can’t find a cure. But how do you cure something that you were born to possibly/probably develop? |
New Multiple Sclerosis Treatment
Studies funded by the Multiple Sclerosis Society [1] have made what could be a promising development in the treatment of MS. Dr Raju Kapoor [2] and his team at University College London published the results of their study in the Lancet [3] a couple of weeks ago, leading to excitement over what these findings could mean for the future of MS treatment. MS is a condition which causes a good deal of suffering so, while these results do not, perhaps, suggest a complete cure, they may well help to improve the quality of life of sufferers.
What Is MS?
Multiple Sclerosis is a condition which attacks the central nervous system. Just like electrical cables, the nerves in our body are protected by ‘insulation’. This insulation comes in the form of a coating known as the ‘myelin sheath’. For reasons as yet unknown [4], the immune systems of people with MS mistakenly attack the myelin sheath. Just as when the insulation on your electric cables gets worn and your electrical goods start to malfunction, this means that signals travelling along affected nerves get disrupted. The symptoms of the disease vary considerably depending upon which nerves are affected. However, it can be an intensely painful and life-altering condition.
Many people affected will suffer from reduced mobility, weakness, and dizzy spells. They may also experience mood swings – partly as a result of the disease itself, and partly as a result of the frustrating pain and stress which it brings in its wake [5]. Though the condition can sometimes be managed for many years with treatment, there is as yet no cure, and sufferers may lead very uncomfortable lives.
Potential New Treatment
The research done by Dr Kapoor and the UCL team could have great implications for the management of this painful condition. Dr Kapoor and his team took a sample of 86 people affected with optic neuritis – a type of MS affecting the optic nerve – and tested them (in a placebo-controlled manner) by attempting to block sodium ions from entering their nerve cells. Sodium induced nerve damage is thought to be a major contributor to the symptoms of MS, so researchers were hopeful that blocking sodium within the nerves could at the very least reduce symptoms and prolong the quality of life of MS sufferers. When trialled, the results showed that those MS sufferers who underwent the true experiment experienced 30% less damage to their nerve fibres over the trial period than those who underwent the placebo experiment. This indicates that such methods could help to slow the course of progressive MS, and make life a lot easier for sufferers.
Moving Forward
Encouraging though these results are, these are still very early days. It will take a while (and a lot more testing) before any treatment based upon these results can be dispensed to patients. Much of the operation of MS still remains a mystery – and the less we know about what causes and perpetuates it, the less information we have to work with when finding a cure. Nonetheless, these results represent a great step forward, and one which could potentially bring comfort and relief to many people currently suffering from this nasty illness. There are also plenty of other avenues of research always being explored, as well as methods to make the lives of MS sufferers easier, and campaigns to reduce any ignorance and stigma which may affect people who suffer from it. Scientists are hopeful that we can at the very least bring the quality of MS sufferers’ lives to normal or near normal levels over the next decade or so – and a great breakthrough regarding cause and cure can surely not be far off [6]!
[1] MS Society, “Promising trial could lead to new type of MS treatment”, Jan 2016
[2] UCLH, “Dr Raju Kapoor”
[3] Rhian Raftopoulos, Simon J Hickman, Ahmed Toosy, Basil Sharrack, Shahrukh Mallik, David Paling, Daniel R Altmann, Marios C Yiannakas, Prasad Malladi, Rose Sheridan, Ptolemaios G Sarrigiannis, Nigel Hoggard, Martin Koltzenburg, Claudia A M Gandini Wheeler-Kingshott, Klaus Schmierer, Gavin Giovannoni, David H Miller, Dr Raju Kapoor, “Phenytoin for neuroprotection in patients with acute optic neuritis: a randomized, placebo-controlled phase 2 trial”, The Lancet Neurology, Jan 2016
[4] NHS, “Multiple Sclerosis – Causes”
[5] PsychGuides, “Anger Symptoms, Causes and Effects”
[6] Sarah Knapton, “‘Miracle’ stem cell therapy reverses multiple sclerosis”, The Telegraph, Mar 2015
New Multiple Sclerosis Treatment
One of the best description of multiple sclerosis I have come across is that it is a “snowflake disease”. By that it means that no one person will share the same exact set of symptoms of MS. A bit like a snowflake , in fact. Each one like each person with multiple sclerosis is unique.
Hence many of the problems with making a diagnosis of multiple sclerosis.
We therefore thought that it would be really useful to run a discussion blog and poll looking in more detail at our readers MS symptoms.
Firstly it would be great if you could take the poll below to share your current symptoms of MS.
If you have a symptom of multiple sclerosis which does not appear in the list please share it in the comments section below.
It would also be great if you would share a bit more about your multiple sclerosis journey in the comments box. You might want to consider and comment upon some of the following questions:-
1) What was the first symptom of multiple sclerosis?
2) How have the symptoms changed over time?
3) Which is the worst symptom of multiple sclerosis?
4) Overall what impact has multiple sclerosis had on your life?
Please remember that these questions are just a guide so anything you want to share will be of great interest!
Thanks.
| herekitty | Constant UTI’s, urinary and bowel incontinnce, RLS, Trigeminal Neuralgia |
| JenniferVillegas | Can’t walk |
| MLCB56 | tbeck2115 Vitamin B complex in liquid form helped me. |
| sally_martin | Since I was diagnosed with acute ms in 2013, it’s just been a mountain of paperwork! Dvla have now taken my driving licence aaarrrggghhhaaarrrggghhh! I can drive, passed test 20 years ago, never crashed or pranged a car! I have to walk with a stick but that’s it! |
| RachelBaileyBuelow | Fatigue, Bowel and bladder difficulties, extremely slow peristalsis. |
| KarolyneRoy | Fatigue, headache, twitches |
| tbeck2115 | Extreme fatigue. Nothing seems to help. I’ve tried provigil, nuvigil and Ritalin. If anyone has suggestions I would appreciate it. |
| mbarrera | I have had severe pain, incontinence and really sensitive on my neck and spine. Was hospitalized and drs couldn’t control my pain |
| AmandaButeau | Hearing distortion. The louder the volume, the more distorted and painful that sound becomes. I’ve had two separate flares that have affected hearing but there seems to not be a whole lot of info on it. |
| ygtMSlife | My newest symptom is my right eye shifting back/forth. I went to my Neuro and she acted like it really didn’t matter. She couldn’t see anything when looking in my eye with her light. I am on Tysabri. So after 3 days of IV Solmedro the shifting stopped for 6 days and has begun again. If anyone else can advise me on this… does Gabapentin or Baclofen help?? I am 49 and have a 10year old son. It is getting harder and harder to just do what must be done daily. |
| Kimberly Flipp | I have Spinal Stenosis as well and I think something has seriously changed, but even using my walker, my legs don’t want to support me, so I’m hunched over like an old lady. The pain is a major drawback as well. I don’t have a neuro currently to help me with this, and my Lupus doc and my Internist won’t address it as they say it is MS related. I have a new neuro and I see her the 23rd and I can tell you the last month and a half have been hell. |
| tuxeltje | first symptom was in 2005, muscle-weakness, diagnosed with MS in 2012, with PPMS in 2014, worst probs are the brainfog/memoryloss, but most shamefull is incontinence. Started heavy muscle-training (body building) in 2013 and it helps me, I can walk (somewhat) again. |
| DawnElizabeth1 | I was diagnosed with RRMS in January 2010. I have overcame a lot of struggles. From being a STNA one day to being zapped the next with SOLU MEDROL, having a mini stroke, achieving sobriety August 27, 2010 , falling and messing up my knee and ending up in a wheelchair, from not being able to walk to long grueling hours of physical therapy and low and behold i could walk again. I was on BETA SERON Injection every other day and they were making me sicker than I was. So now I am on a gluten free and sodium free diet, but the flare ups keep coming. My greatest hope and prayer is that a MS cure is found. My current symptoms are foggy brain, forgetfulness, memory loss (past and present), SEVERE PAIN AND BURNING in my legs..and we can’t find anything that works. I am falling down, severe constipation, bladder leakage, I have had vision changes, very bad balance and lots of fatigue. Don’t get me wrong I have some good days, but since my last flare up in October its more bad then good. I see Nuro in Feb. I think I am going back on MS meds. |
| jennya2584 | I am waiting for my diagnoses of MS which should have happened 3 years ago when I has optic neuritis which showed in my MRI or at least be diagnosed with CIS (clinically isolated syndrome). I have been to hell and back sine! I have seen specialists (all of them), had every test in the book to rule out everything and now I’m back for round 2 with my neurologist. My sx are; blurry vision with visual changes, left sided numbness and tingling, extremely painful jaw, neck, head and back with a ridiculous amount of knots that are new, fatigue, memory loss, I could go on and on!! Tomorrow I’m having another MRI and I just want a diagnoses to know what is actually going on even though I have a pretty good idea! Any suggestions?? Maybe what my next step could be or a second opinion?? Thanks a lot!!! |
| ColletteGary | My weakness in the hands and arms and legs are very scary for me. It is getting worse each and every day. I get up after a good night sleep, so tired I feel so weak. it is painful to put my right foot on the floor. I feel extreme bruising like pain on the bottom of my foot. My legs feel like they are going to go out from under me. I have fallen so often, that I am learning how to fall without hurting myself. It is hard to hold a cup in my hand or any food for that matter. My diagnosis came to light when I woke up and could not see out of my right eye. The pressure behind me eye was so sever that my husband rushed me to the doctor and they sent me right to a retina specialist and he told me I had a detached retina and that something was not right and they sent me to a Nero doctor and he put me in the hospital and ran a battery of test and I then was diagnosed with MS. I have relapsing Progressive thype. I slowly get worse, but it seems that I am in the middle of a relasp. I am going to work hard to be ok . I am trying hard not to get depressed. |
| tlbrandon | I’m in process of trying to get into a neurologist to test for MS. I have a lot of issues that I believe will be ms but having multiple auto immune issues confuses a diagnosis. What I am wondering is if someone with MS has a problem with skin pain? When I itch sometimes the pain can be an 8-10 on the pain scale. It can cause me to shake in pain, just from itching, dropping stuff, loss of balance, bowel problems, numb spots and again some difficulty with swollowing. My eyes and hands twitching, bumping into walls as I walk are a few problems I’ve been experiencing. I keep asking my Dr’s what’s causing these symptoms and not much response, I’ve started asking if MS but can’t get an appointment with out referral from their doctors and their booked till next jan… had many of these symptoms for over 20 years.. does any of this sound familure..? |
| linemanwife | spine/back pain…bladder problems…eyes twitching back and forth (nystagmus)…balance and walking problems…muscle spasms…fatigue my first symptom was optic neuritis… The symptoms go from one to another a you have to figure out if …hmmm …I wonder if this is ms or something else… my worst symptom was vertigo and my muscle spasms that are debilitating … I had to quit my job and I have had to change my life style tremendously. I am unable to sit for long periods of time with the muscle spasms and the pain in my spine is unbearable at times. (then you have to literally beg for things to stop the pain. |
| RobinLMaclennan | Fatigue extreme |
| LindaPike | Minimal symptoms, a little fatigue, minor dizzy spells, migraines |
Seeing MS – Dizziness
Laura Petruccelli has very kindly provided us with a guest post on Seeing MS – a new and brilliant way of raising awareness of the symptoms of multiple sclerosis.
Ms Petruccelli writes “It’s hard to fight something we cannot see.
Most symptoms of multiple sclerosis go unnoticed by everyone except the person living with them. One day they can alter your memory, the next your vision. Striking without warning and leaving no trace; they are invisible.
This thought inspired 9 photographers from around the world to start the Seeing MS campaign – a global photographic project that visualises the invisible symptoms of multiple sclerosis.
Each photographer was briefed by someone living with MS. They interpreted their symptoms in a single image inspired by their stories and experiences. From each of the images, a group of dedicated creatives from Grey Australia, Infinity squared and Limehouse worked together to create the Seeing MS app. Photo filters based on each symptom will allow the public to see and share how MS affects those living with the disease.
By inviting people to learn and experience what it feels and looks like to live with multiple sclerosis first hand, we can raise further awareness and understanding of this mysterious disease. It is hoped that doctors can use the project as a way to help the newly diagnosed find a community of people that experience life the way they do.
Help expose the invisible disease by sharing the full project or downloading the Seeing MS app at http://seeingms.com“