This Is MS Multiple Sclerosis Community: Knowledge & Support

After a bit of searching I found the journal's site.
http://cranio.com/volume29/issue1/neuro ... lot-study/

You can get the article for $10 or the whole issue for $40 which covers 3 months of papers. http://cranio.com/volume29/

NHE

can anybody explain the difference in a dentist called a "osb" oral symmetric balance dentist and a neuromuscular orthotics dentist? i take it they are trying to accomplish the same thing-but then symmetric makes me think they may be able to fine tune things a little better. ?????

then their experience and success whichever one chooses means a lot.

oh my-decisions-decisions-decisions.

What is good about all this enquiry is that it is being increasingly accepted that the TMJ and other asymmetries play a vital roll in patient health and is behind some 85% of illnesses - many wrongly attributed to auto immune dysfunction or classed into various syndromes and idiopathies!

It should be mandatory that all GP's, physicians, neurologists and other specialists refer patients for a cranio-dental and skeletal symmetry evaluation in their differential diagnoses, to avoid a claim of negligence. This includes patients who repeatedly present with a cold, children who present with asthma, headaches, females presenting with gynaecological problems, patients presenting with fatigue, IBS, IBD, heart palpitations, neck pain, back pain and countless other symptoms.

The conglomeration and lack of timely treatment of these symptoms in later life leads to a diagnosis of Chronic Fatigue Syndrome, Multiple Sclerosis and other idiosyncrasies.

This article was published in a dental specific publication. It would of been peer reviewed by such, and will not be on the general reading lists of neurologists. So it will not become increasingly accepted by those that currently are at the forefront of MS treatment. ie Neurologists.

No one is going to read anything until mandated to do so which is never likely to happen either. Only a handful of people read these threads. My advice needs to be disseminated widely amongst patients who are at the receiving end of it. 62% of people who go bankrupt in the USA is a direct result of illness each year. It need not be so.

November update.

Emma has had some ups and downs over the last month or so, mostly nothing to do with the jaw work at all.
Depression has been a big factor along with an annoying sinus infection that's been with her for 10 months and she just can't seem to shake it.

We're approaching the one year anniversary of starting treatment with Amir. Have we seen an improvement? Damn right we have and we fully intend to see this through to it's conclusion, however long that may take. Neuralgia eradicated, fatigue eradicated

Emma picked up a new appliance today. Note I always call these appliances, braces is too simple a word for the creations that Amir comes up with. I was chatting with Emma on the way home about the appliances and we figured out this must be the 8th different type she's had in the last 11 months.

So why so many different types? Well that's the $64,000 question.

Like MS in everyone is very different, how our bodies respond to Amir's appliances is different. Don't think of this what Amir does as like fixing a broken limb - you don't set a splint or cast, it heals and you're cured.

What he does is make wonderful intricate little devices that coax and tease and push and pull and twist and stretch in all sort of directions. Teasing the teeth and jaw to move in the direction he wants it to. Sometimes though the body just does it's own thing and moves it off slightly the wrong way or not where it was hoped. So then another device is created to move it where Amir knows it's meant to be to make us healthy and get things back on track.

Amir doesn't even know what he's doing with the next appliance until he gets there, the treatment is all very "organic". It's also why it's incredibly difficult to explain as a simple single process.

So back to the ups and downs. Depression has been Emma's biggest enemy recently, We'd been chatting with Amir a week ago when Emma had a few fixed items and one removable brace all taken out and given a "rest" for a week until today's new appliance was ready. The rest seems to have done her good as her mood has lifted and she's in an altogether better place mentally this week. Long may it continue. Of course we have no idea if these things are related or not (appliance removal and mood lift) but the body is a bizarre machine so it's not beyond the realms of possibility.

Where do we go now?

Well were back to see Amir in two weeks for a check up. Emma is now seeing a neurophysio and visiting a gym once/twice a week to rehabilitate.

She walked into Amirs surgery today without her walking frame or sticks. She needed help from me to balance, but she would not usually be without the frame, it's as much a mental comfort blanket and it is a physical support. She's not running the London Marathon next year, but it's certainly a step in the right direction (pun intended)!

This is impressive progress! How much did she rely on the walking frame a year ago? It is hard when you don't see the progress you had hoped for. Sometimes it seems to be a definite step forward and then there is a pause of nothing or worse a step backwards. It really helps to hear Emma's tale. I hope we meet up again sometime. It is so much nicer to get to chat with others.

Emma's walking is only now just starting to improve.

I'm not entirely sure we can put this down to the jaw treatment directly, I think that would be pushing things.

Emma's walking is bad mainly from muscle wastage, lack of balance and nerve impulses. But the big one of those three is the muscle wastage and distinct lack of exercise.

The jaw treatment has given Emma back some energy, well maybe I should rephrase that, it's removed fatigue. That allows her to exercise in a way she's not been able to do for some time.

Rehabilitation is realistically where Emma is now, or just starting out. It could take a while and it is difficult sometimes to keep her motivated when she'd just prefer to sit with her rabbits or watch TV.

Think of this way, Amir removes a lot of the shackles that have been associated historically with MS. It's then up to you what you chose to do once the shackles are removed. That's actually when it gets tough!

Getting rid of the fatigue is a huge improvement. I don't think anyone really enjoys the rehab process! My uncertainty is about how much Amir can fix, and what I'm left with. Sometimes, rarely, my legs feel just normally weak, but mostly they feel ms-y, tingly, numb, dead. When they feel that way, exercise doesn't feel good, it just drains me further. Does Emma get sore muscles after exercising now? My muscles ache but not the way they are supposed to after working out. I am waiting to feel real sore muscles again! Right now I am just using a vibroplate and directions from the internet. I wish I could get some rehab help. It is hard to figure out what all needs fixed.

Emma isn't at that point where she is pushing herself, it's still the rehabilitation stage.

I'm on line tonight buying a "wobble board" for her. The balance type thing.

I know what you're saying about wondering how much Amir can fix. I look at it this way:- He's removing restrictions that have been placed on the body (physically) that allow you to help yourself get back to some degree of wellness. Amirs work is probably less than 50% of the final puzzle, the rest of it is completely down to each individual. Breathing exrcises, physical exercises etc etc.

But correcting the misalignment would still be the first step. You can't really do everything else and get 50% results, but maybe you can have his treatment and stay at 50% if you don't do the rest of the work. Then, it would once again be a case of those with a longer history of disability have so much more work to do than someone still gimping about on their own.

Do you think as Emma becomes more mobile, she'll reach a critical mass and functionality improvements will accelerate? It is hard to push yourself. It is always easier to just sit down and have a cup of tea. If we could sit down and slide uphill, we'd all be heroes.

We did have an unexpected moment of clarity on Emma's second visit to her Neurophysio. She'd had almost an hour of intensive massage on various unused and under exercised tendons and muscles in both her legs.

When she got up to walk out her gait had changed massively, she was walking with straight feet instead of splayed at "ten to two". She's was practically marching down the corridor! Then she has a sit down and has a cup of tea!

The sit down/tea issue is out biggest hurdle. Emma hasn't truly been properly mobile for 10+ years. It think she's actually scared a little of getting better. What happens if she fully recovers? She'd have to get a job etc etc.

But I think you're right, there will be a point at which rehabilitation becomes fitness training. That point will differ in everyone and will no doubt be directly related to the period of time spent inactive/disabled.

The difficulty is actually motivation in Emma's case.

Unexpected visit to Amir today.

Just under two weeks ago Emma had pretty much all her appliances/braces removed as Amir wanted to move her jaw in a slightly different way with a replacement appliance used 3 times daily.

To cut a long story short, neuralgia returned last night with vengeance, not as bad as it's been historically, but enough to have us both up at 3am to 5am as well as earlier in the evening and a dose of valium to provide Emma some relief.

A quick email to Amir and we were advised to get to him as early as we could today. I got Emma up at 7:30am - I won't need to tell you how tough that is for PwMS!

By 11:30am we were leaving Amirs with a brand new bespoke appliance made this morning from a cast taken as soon as we arrived.

Normal service resumed, neuralgia now gone again.

We went to Emmas Neurologist this week simply to get another MRI scan. I discussed CCSVI and Jaw alignment and he had the nerve to call it all "Snake oil" - I lost it at that point and gave him a piece of mind after which I asked him to explain the chemical make up of Copaxone and how it interacted with the human body and what it actually did for "MS", which he had been trying to convince Emma to start again.

Of course, he couldn't tell me what it was or how it even worked, as they don't know, not even the manufacturer can answer those questions.

So I put it to him that it was in fact he who was trying to push "snake oil" or more accurately, trying to convince Emma to take a drug that he had no idea how it worked for a condition that he didn't understand. The meeting ended rather abruptly at that point. Asshole!

Good for you EJC, I'm on the verge of such a reaction myself, nothing is listened to or considered outside of the NHS MS box ??

So you had a 'reminder' of how bad things were a year ago! I think it is easy to forget as we focus on our current afflictions just how much 'worser' we were before Amir's treatment. I think it is just outright amazing how quickly and dramatically these small changes in the jaw affect us. For me, it seems that every little change impacts my bladder. It is quite a rollercoaster ride. It has improved but still is not normal.